Cushing's Moxie: Fighting The Worst Disease You've Never Heard Of

Spread the Word.

2012-01-16T11:23:00.001-06:00

The Internet Rescues A Family

2012-01-07T10:27:00.001-06:00

I usually stick to Cushing's stories, but this one really tugged at my heart. Online relationships can be real, valuable, substantial, and irreplaceable. I don't even want to think about what would have become of me without the guidance, support, and love from Cushing's patients I've met in the past years. Thank you to all y'all.

		LISA BELKIN: The Internet Rescues A Family
	If you've been tempted to dismiss the internet as superficial and soulless, and online relationships as a poor imitation of real ones, you might want to talk to Serge and Monica Bielanko today.

FULL ARTICLE: Subclinical Cushing’s syndrome: definition and management

2011-12-23T12:29:00.001-06:00

Clinical Endocrinology

Volume 76, Issue 1, pages 12–18, January 2012

Full text: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04253.x/full#t1

Terzolo, M., Pia, A. and Reimondo, G. (2012), Subclinical Cushing’s syndrome: definition and management. Clinical Endocrinology, 76: 12–18. doi: 10.1111/j.1365-2265.2011.04253.x

Summary

Subclinical Cushing’s syndrome is an ill-defined endocrine disorder that may be observed in patients bearing an incidentally found adrenal adenoma. The concept of subclinical Cushing’s syndrome stands on the presence of ACTH-independent cortisol secretion by an adrenal adenoma, that is not fully restrained by pituitary feed-back. A hypercortisolemic state of usually minimal intensity may ensue and eventually cause harm to the patients in terms of metabolic and vascular diseases, and bone fractures. However, the natural history of subclinical Cushing’s syndrome remains largely unknown. The present review illustrates the currently used methods to ascertain the presence of subclinical Cushing’s syndrome and the surrounding controversy. The management of subclinical Cushing’s syndrome, that remains a highly debated issue, is also addressed and discussed. Most of the recommendations made in this chapter reflects the view and the clinical experience of the Authors and are not based on solid evidence.

Since the early nineties, the serendipitous detection of clinically inapparent adrenal adenomas has been associated with a state of subtle cortisol excess. First described in case reports, subclinical hypercortisolism was then appreciated as a frequent endocrine disorder, being detected in up to 15–20% of patients with adrenal incidentalomas.^1,2 This condition was initially defined as ‘preclinical’ Cushing’s syndrome, but afterward the term ‘subclinical’ entered in use because it does not imply any assumption on the further development of a clinically overt syndrome. The National Institute of Health, State-of-the-Science Conference concluded that a more precise definition should be ‘subclinical autonomous glucocorticoid hypersecretion’ but this never gained widespread acceptance.³ The semantic quarrel underscores the uncertainties about subclinical Cushing’s syndrome that has still been recently labelled as a poorly defined entity.⁴ In this review, subclinical hypercortisolism and subclinical Cushing’s syndrome will be used synonymously.

Definition of subclinical Cushing’s syndrome

The concept of subclinical hypercortisolism

Subclinical Cushing’s syndrome is a common disorder assuming a frequency of up to 20% in patients harbouring incidentally discovered adrenal adenomas, which are found in approximately 4% of middle-age persons and in more than 10% of elderly population.^3,5–7Ascertainment of subclinical Cushing’s syndrome should stand on three criteria: first, the patient bears an adrenal adenoma detected serendipitously without any previous suspect of adrenal disease; second, the patient does not present a clear Cushingoid phenotype; third, the endocrine work-up shows autonomous (ACTH-independent) cortisol secretion.⁸

As to the first point, the concept of subclinical hypercortisolism may apply also to patients bearing pituitary incidentalomas and patients who are on steroid replacement;⁸ however, discussion of these conditions is beyond the scope of this review.

The second criterion is elusive depending largely on individual clinical judgment and personal practice. The problem is that Cushing’s syndrome is actually a spectrum of clinical presentations that is hard to categorize, because of a continuous variability from the more severe phenotypes to the milder ones. The less-experienced physician may not recognize (mild) signs of hypercortisolism, such as facial fullness that can be identified only after a careful assessment of the patient’s photographic material. Thus, what is subclinical for a given physician may actually be obvious for another one. The patients with ‘true’ subclinical Cushing’s syndrome should present only clinical features that are less specific for cortisol excess and are of common observation in the context of the metabolic syndrome (i.e. central obesity, hypertension).

The third point suffers from the inadequacy of current tests to detect minimal cortisol excess. Studies may demonstrate that average results of a specific test are able to differentiate patients with adenomas secreting cortisol autonomously from patients with nonfunctioning adenomas. However, there is considerable overlap between the different categories and it is usually difficult to qualify an individual patient, unless his or her results fall in the extreme ends of distribution. In this context, cortisol secretion ranges from nonfunctioning adrenal adenomas, to adenomas producing cortisol in overt excess with a manifest clinical phenotype, with adenomas associated with minimal cortisol excess and subclinical Cushing’s lying between these extremes. Thus, there is no clear dichotomy between normal and abnormal cortisol secretion, and the process of setting thresholds associated with various outcomes is arbitrary, being related, either implicitly or explicitly, to personal preferences rather than solid evidence.^3,8–10

In Table 1, we compared subclinical and mild Cushing’s syndrome; in general, patients with subclinical Cushing are older, more frequently of male gender and bearing an adrenal instead of pituitary adenoma when compared to patients with mild Cushing’s. These differences result from comparison of average data and are of limited help when evaluating an individual patient. The clinical presentation is somewhat different, because the condition is recognized serendipitously in one case and following clinical suspicion in the other, and the specific signs of cortisol excess¹¹ should not be present in the subclinical variant. Having said this, we have to admit that it is difficult to set precise boundaries separating patients with a mild phenotype from patients with a nonspecific phenotype. Only personal experience and clinical experience may help differentiating, as an example, a slight facial fullness caused by mild cortisol excess from facial roundness associated with obesity. There is also a great overlap in the biochemical presentation, even if endocrine alterations are generally more consistent in mild Cushing’s syndrome where ACTH-independent disease is less frequent.

	Subclinical Cushing	Mild Cushing
Table 1. Comparison of subclinical Cushing’s syndrome and mild Cushing’s syndrome.
UFC, urinary free cortisol; MSC, midnight salivary cortisol; DST, dexamethasone suppression test. *For definition of specific Cushingoid signs refers to reference.¹¹

Investigational drugs may expand medical treatment of Cushing’s syndrome

2011-12-22T13:06:00.001-06:00

We Cushies hope that in 2012, we will see success as more patients to try these drugs.

As you know, my pituitary continues to produce excess ACTH, a hormone that causes my Cushing's. Even after two tumors were removed during two pituitary surgeries, abnormal cells persist. Medication may be a real possibility for Cushies like me. If medication can stop this ACTH production, there will be no need for a life-changing bilateral adrenalectomy (BLA). Click here to see the December 2011 cover story for Endocrine Today.

Investigational drugs may expand medical treatment of Cushing’s syndrome

Endocrinologists face many challenges when treating patients with Cushing’s syndrome. Diagnosis can be difficult because many of the disease’s characteristics, such as obesity, depression and hypertension, are also common in the general population.

Treating the disease presents hurdles as well. With its potential for total cure, transsphenoidal surgery remains the first-line treatment. However, the problems of achieving permanent remission in all cases demonstrate the need for medical therapies for this condition.

Laurence Katznelson, MD, of Stanford University, Hospital and Clinics, said pasireotide could possibly prevent pituitary tumor growth and promote tumor shrinkage in patients with Cushing’s syndrome.

Photo by:
Steve Gladfelter,
Visual Arts at Stanford University

Currently, endocrinologists use several medical therapies to treat hypercortisolism, although none have FDA approval for that particular indication. Two new investigational drugs — mifepristone (Korlym, Corcept Therapeutics) and pasireotide (SOM230, Novartis) — have the potential to meet those unmet needs, according to experts interviewed by Endocrine Today.

“Recently completed research studies, which involved innovative medical therapeutic strategies that target the corticotroph adenoma itself or block the effects of cortisol in the periphery, should bring new treatment options in the future,” Maria Fleseriu, MD, associate professor, director of the Northwest Pituitary Center at Oregon Health & Science University, said in an interview.

Manufacturers of both new medications have submitted new drug applications to the FDA. Corcept expects to hear from the FDA on Feb. 17, according to a spokesperson for the company.

Mifepristone has a unique mode of action in that it blocks the cortisol receptor, Robert L. Roe, MD, president of Corcept Therapeutics, said in an interview.

“With that receptor blocked, many of the problems associated with Cushing’s syndrome can be greatly improved, including: obesity, diabetes, insulin resistance, high blood pressure, quality of life and depression,” Roe said.

The SEISMIC trial, a 24-week, multicenter, open-label study, included 50 patients with persistent or recurring Cushing’s disease, metastatic adrenal cortical carcinoma or ectopic adrenocorticotropic hormone (ACTH) syndrome that was not amenable to surgery, according to Fleseriu, who was an investigator on the study. There were two primary endpoints: blood sugar improvement in patients with glucose intolerance and an improvement in BP in patients with a diagnosis of hypertension but without abnormal blood sugar levels. The key secondary endpoint looked for global clinical improvement as determined by a three-member independent data review board.

Results from the phase 3 study showed that, overall, mifepristone yielded significant clinical and metabolic improvement in patients with refractory Cushing’s syndrome, Fleseriu said. Of the glucose-intolerant patients, 60% responded, and BP improved in 38% of patients. The global clinical endpoint was positive in 87% of patients, Roe said.

Maria Fleseriu

“In addition, out of 34 patients who completed the main study, 30 elected to continue in the long-term extension study,” Fleseriu said.

She said mifepristone “offers a new approach for the treatment of Cushing’s syndrome that [has] failed other therapies. Keeping in mind that biochemical parameters will not be available for monitoring these patients, close clinical observation is recommended.”

Yet, there are aspects of mifepristone that are still unknown.

“There will be a learning curve with this drug on how to dose it and use it properly to get a good response,” said James Findling, MD, professor of medicine, Endocrinology Center and Clinics, Medical College of Wisconsin, Milwaukee, who was the principal investigator of the study.

James Findling

Also on the horizon is the investigational agent pasireotide, a multiligand somatostatin analogue with a high affinity for the somatostatin receptor type 5, which is often expressed by corticotroph adenomas in Cushing’s disease. Pasireotide blocks the secretions from ACTH-secreting pituitary tumors.

“Pasireotide works by attacking the pituitary tumor to reduce the ACTH level,” according to Laurence Katznelson, MD, professor of medicine and neurosurgery at Stanford University and medical director of the pituitary program at Stanford Hospital and Clinics. “Possibly, this drug could prevent tumor growth or lead to tumor shrinkage, although we await data to support that.”

Results of the multicenter, phase 3 PASPORT-CUSHINGS trial, presented at the Endocrine Society’s 93rd Annual Meeting & Expo in June, included 162 patients with persistent/recurrent or newly diagnosed Cushing’s disease who were ineligible for surgery. Researchers randomly assigned participants to receive twice-daily subcutaneous pasireotide injections of 600 mcg or 900 mcg. The primary endpoint was urinary-free cortisol levels at 6 months without dose up-titration.

Of the patients in the 900-mcg dose group, 26.3% had normal urinary-free cortisol levels at 6 months; at 12 months, 25% maintained normal levels. The median reduction from baseline in urine-free cortisol after 6 months of treatment was 47.9% for both dose groups.

The researchers noted significant clinical benefit in most patients, including lower BP and total cholesterol, as well as weight loss, Fleseriu said.

“It is noteworthy that while urinary-free cortisol normalization was seen in just a subset of patients, the rate of normalization was higher in patients with lower baseline urinary-free cortisol, making it, in my opinion, an attractive treatment for patients with mild elevations in urinary-free cortisol,” Fleseriu, who was also an investigator for this trial, told Endocrine Today.

Pasireotide was well tolerated in the studies, she added.

“Adverse events were comparable to the other somatostatin analogues, with the exception of a much higher incidence of hyperglycemia,” Fleseriu said. “Patients treated with this drug will require strict monitoring and prompt treatment of hyperglycemia.” The reasons for hyperglycemia are related to inhibition of insulin release from the pancreas by this multiligand somatostatin analogue. The type 5 receptor is abundant on pancreatic insulin secreting cells of the pancreas.

Timely diagnosis, treatment critical

Cushing’s syndrome is the result of chronic exposure to high levels of cortisol. Cortisol, typically released in stressful situations, controls how the body uses carbohydrates, fats and proteins. In addition, it helps decrease the immune system’s response to inflammation.

Untreated, Cushing’s syndrome can have serious consequences, including significant mortality and morbidity. Timely diagnosis and appropriate treatment are critical for this rare disorder, according to Fleseriu, who is also associate professor of medicine/endocrinology and neurological surgery at Oregon Health & Science University.

The endocrinologist uses the following tests to diagnose the disorder: 24-hour urinary-free cortisol levels; late-night salivary cortisol measurements; and low-dose dexamethasone suppression test.

After making the diagnosis of hypercortisolism, the next step is to determine the cause of excess cortisol secretion. There are several tests available for this purpose: corticotropin-releasing hormone (CRH) simulation test; direct radiologic visualization of the pituitary and adrenal glands; and inferior petrosal sinus sampling for ACTH.

The most common cause is long-term synthetic steroid use to treat inflammatory illnesses such as asthma or rheumatoid arthritis, according to Katznelson. In these cases, gradually reduction of the glucocorticoid will reverse the disorder.

Another cause is an ACTH-secreting pituitary adenoma. The excess stimulates the adrenals to produce and secrete excess cortisol release, Katznelson said. This is also known as Cushing’s disease.

Pituitary adenomas are responsible for 70% of Cushing’s syndrome cases, according to information from the National Institute of Diabetes and Digestive and Kidney Diseases.

Surgery is first-line treatment

John Carmichael

First-line therapy for Cushing’s disease is transsphenoidal adenomectomy, in which the surgeon approaches the pituitary through the nose and, using either a microscope or endoscope by trained neurosurgeons, according to John Carmichael, MD, assistant professor of medicine, The Pituitary Center, Cedars-Sinai Medical Center, Los Angeles.

The procedure boasts an excellent cure rate.

“In good hands, with a small tumor, you can get cure rates of about 85%,” Carmichael said. “It depends on a number of factors: the skill of the surgeon, the size of the tumor and the level of invasiveness.”

If surgery is curative, the patient will require cortisol replacement.

“Once you remove the tumor, the normal tissue has been suppressed by the activity of the tumor for so long that it takes a long time for patients to recover and start making cortisol on their own,” Carmichael said. “It can take as long as 6 to 12 months for patients to completely recover their normal cortisol secretion once they’ve been cured.”

David M. Cook

However, the surgery is associated with risks, including bleeding and infection, although they are “pretty rare,” according to Carmichael. One of the most common risks is a pituitary injury that can cause diabetes insipidus, which is almost always transient. Other postoperative problems include possible cerebrospinal fluid leaks and the possibility of recurrence, said David M. Cook, MD, an endocrinologist in the department of medicine, Oregon Health & Sciences University.

Sometimes the tumor is hard to find during the first surgery, Katznelson said.

“The problem is, in 40% to 50% of patients who have Cushing’s disease, the tumor is very small, if not almost invisible, on the MRI scan,” he said. As a result, the surgeon may remove normal gland or possibly the entire pituitary, resulting in hypopituitarism. The patient would require hormone replacement and would still have Cushing’s syndrome.

Radiation is a possible treatment for these cases.

“The role of radiation is in the patient who has already had surgery for Cushing’s syndrome. The tumor is visible but cannot be completely removed. Radiation is most useful when there is a target to irradiate,” Katznelson said, adding that even in these cases, radiation cannot promise 100% efficacy.

Unfortunately, radiation takes a significant amount of time to work.

“People are a little reluctant to use radiation because it takes years to help,” Cook said. “It is not curative and patients can relapse from radiation also; it is not foolproof.”

Ectopic ACTH syndrome

Sometimes, tumors located outside the pituitary can produce ACTH, resulting in the ectopic ACTH syndrome. The tumors are usually malignant. In more than half of the cases, the tumors are found in the lungs, according to information from the NIDDK.

“You would need surgery in that location to get rid of the tumor,” Carmichael said.

If an adrenal tumor is stimulating an overabundance of cortisol, the definitive cure is adrenalectomy.

“If we do adrenalectomy, all of the [symptoms of] Cushing’s syndrome go away, but the primary pituitary tumor, which may have been microscopic, can start to become more aggressive and grow and become more difficult to treat in the long run,” Katznelson said. “That is Nelson’s syndrome.”

The adrenal insufficiency that follows adrenalectomy is serious, Cook said.

“It is dangerous to not have your adrenals; it is the most dangerous disease that endocrinologists treat,” he said. “A number of sudden deaths have been reported in patients without adrenals.”

Katznelson also said that managing these patients can be challenging.

“Management of primary adrenal insufficiency is sometimes difficult, because not only does the patient lack cortisol, but will also lack aldosterone, which is important for maintaining electrolytes and volume status,” he said. “Patients often find it quite challenging to manage primary adrenal insufficiency.”

Medical therapies for Cushing’s syndrome

Besides surgery and radiation, endocrinologists can use several medical therapies to treat Cushing’s syndrome; however, to date, none has obtained FDA approval to treat the disorder.

The medical treatment used most often in the United States is ketoconazole, an antifungal agent that blocks the enzymes in the adrenal glands that produce steroids, Findling toldEndocrine Today.

Ketoconazole, administered two to three times daily, is generally successful.

“It is an effective therapy,” Findling said. “Probably 50% to 70% of patients will have a response.”

However, this drug is not the optimal choice for long-term use.

“Ketoconazole has been associated with some toxicity; liver function abnormalities can occur and, in fact, liver failure can occur,” he said.

Another medical treatment option is mitotane (Lysodren, Bristol-Myers Squibb), which blocks adrenal steroid enzymes, Findling said. This toxic agent takes considerable time to work; in fact, it may require roughly 3 or 4 months for cortisol levels to normalize. It is used rarely in the United States.

“Mitotane has a limited future as a therapy for Cushing’s syndrome, except for in patients who have adrenal cancer, at least in the US,” Findling said.

Metyrapone (Metopirone, Novartis), another agent, effectively blocks adrenal steroid enzymes; however, it is not commercially available in the United States, Findling said.

Etomidate is an anesthetic agent that also inhibits adrenal steroidogenesis and is employed successfully in patients with very severe hypercortisolism who are not ready for surgery.

“If etomidate were available in a pill, it would be an excellent medical treatment for Cushing’s syndrome,” Findling said. “With subhypnotic doses, etomidate lowers the cortisol level smoothly down into the normal range. … It is well tolerated, but has to be given as a continuous IV infusion, so it is not practical.”

All of these medications have severe adverse effect profiles, according to Carmichael.

No replacement for surgery … yet

Although mifepristone and pasireotide show some promise as treatments for Cushing’s syndrome, it is not time to put the scalpels in storage, the experts said.

“Neither of these drugs, at least for the foreseeable future, will replace surgical treatment of Cushing’s syndrome,” Findling said. “Like most disorders, if you have a surgical procedure that will resolve the endocrinopathy and restore normal hormonal function, it is usually the treatment of choice.”

However, these medications are a welcome addition to the armamentarium, Carmichael said.

“It remains to be seen exactly what their place will be and how they will be best used. But, certainly, in cases where surgery is not an option or where you need to control the disease in someone who has very severe disease, they would have a role,” he said. Currently, Carmichael sees medical therapy as an adjuvant treatment, which would follow surgery if it was not curative. Also, endocrinologists may use them in place of surgery if surgery was not an option.

“There is a lot more room for work,” Carmichael said. “The ideal paradigm of having a medication that is safe and controls the disease and in a sense would replace surgery would be an ideal goal, but we are certainly not there yet.”– by Colleen Owens

For more information:
Colao A. OR09-6. Presented at: The Endocrine Society 93rd Annual Meeting & Expo; June 4-7, 2011; Boston.
Fleseriu M. [OR09-5] Mifepristone, a glucocorticoid receptor antagonist, produces clinical and metabolic benefits in patients with refractory Cushing syndrome: results from the Study of the Efficacy and Safety of Mifepristone in the Treatment of Endogenous Cushing Syndrome (SEISMIC). Presented at: The Endocrine Society 93rd Annual Meeting & Expo; June 4-7, 2011; Boston.

Gross BA. Neurosurg Focus. 2007;23:E10.
National Institute of Neurological Disorders and Stroke. NINDS Cushing’s syndrome information page. Available at:www.ninds.nih.gov/disorders/cushings/cushings.htm.

National Endocrine and Metabolic Diseases Information Service. Cushing’s syndrome. Available at:www.endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx#causes.

Disclosures: Dr. Fleseriu is principal investigator in multiple Cushing’s trials and past consultant for Novartis; she is also the principal investigator on Corcept Cushing’s trials. Dr. Findling is a paid consultant for Corcept Therapeutics. The other doctors in this article did not report any relevant financial disclosures.

Which is the most reliable screening method for Cushing’s syndrome?

Tests are equally accurate, but have limitations

The diagnosis of Cushing’s syndrome is problematic. It is one of the most difficult endocrine diseases to diagnose. Diagnosis includes assessing the symptoms and signs of Cushing’s syndrome because the symptoms and signs overlap with common disorders, including obesity, depression and polycystic ovary syndrome. Many patients consult websites in an attempt to find an explanation for their weight gain, fatigue, depression and other symptoms. They ask frequently after a Web search if their symptoms could be Cushing’s syndrome.

Screening tests for Cushing’s syndrome include three different tests: an 11 p.m. or midnight salivary cortisol level; a 24-hour urine free cortisol level; and an 8 a.m. cortisol level after ingestion of 1 mg of dexamethasone at midnight the previous night. How reliable are these tests? They are equally accurate — approximately 90% to 92% reliable, which is actually good for screening tests.

However, all three tests have limitations. Results of the nighttime salivary cortisol test are affected by laboratory accuracy (not all laboratories are equally reliable) and sleep patterns. In severe depression cases, the results may be falsely elevated. The 24-hour urine free cortisol test is an indicator of overall cortisol production. The most accurate method of measurement — tandem mass spectrometry with concomitant measurement of urine volume and urine creatinine — provides a good measure. It may take several 24-hour urine collections to confirm hypercortisolism. The 1-mg overnight dexamethasone suppression test is reliable, but with several caveats. The test is standardized according to administering dexamethasone at midnight and measurement of serum cortisol promptly at 8 a.m. the following day. However, while the patient may have gone to the lab at 8 a.m., the blood sample may have been obtained later, which invalidates the test. Additionally, if the patient is taking medications that alter dexamethasone metabolism, the results may not be valid. The endocrinologist must measure a serum dexamethasone level to confirm the validity of the test.

The diagnosis of Cushing’s syndrome is dependent upon confirming consistent overproduction of cortisol. The diagnosis may require repeated testing and this should be done in any patient in which there is a suspicion of Cushing’s syndrome.

Mary Lee Vance, MD, is professor of medicine and neurosurgery at University of Virginia Health System, Charlottesville, Va.

Disclosure: Dr. Vance reports no relevant financial disclosures.

Late-night salivary cortisol is best initial test

Ty Carroll

No test is perfect for all patients. In addition, it is important to remember that some patients will require multiple, different tests to confirm or exclude Cushing’s syndrome. However, that being said, late-night salivary cortisol is the best initial screening for most patients with suspected Cushing’s syndrome.

Late-night salivary cortisol is the most specific test for Cushing’s syndrome. The sensitivity and specificity are very good. Multiple studies have examined late night salivary cortisol testing, and the majority of those studies show sensitivity of more than 95% and a specificity in the range of 90% to 100%. That is comparable to — or better than — other methods to diagnose Cushing’s syndrome.

Also important to note: It is easy for patients to perform late-night salivary testing. Patients are able to do the collection at home and mail in the completed samples to a reference lab, whereas urinary free cortisol and dexamethasone suppression testing can be difficult for some patients to complete. In addition, for the most part, late-night salivary cortisol is not affected by other medications that patients take, unlike dexamethasone suppression testing, which can be affected by several medications that patients often take to treat other conditions.

Ty Carroll, MD, is assistant professor of medicine at Endocrinology Center and Clinics, Menomonee Falls, Wisc.

Disclosure: Dr. Carroll is an investigator in Corcept’s clinical trials of mifepristone.

Fatal Infections Linked to Neti Pots

2011-12-18T11:51:00.001-06:00

CAUTION CUSHIES.

Many Cushie patients use Neti pots after pituitary surgery to clear the sinuses. They swear by them. But be careful.

http://abcnews.go.com/m/story?id=15170230

"If you are irrigating, flushing or rinsing your sinuses, for example, by using a Neti pot, use distilled, sterile or previously boiled water to make up the irrigation solution," Louisiana State epidemiologist Dr. Raoult Ratard said in a statement. "Tap water is safe for drinking but not for irrigating your nose."

My Friends with Adrenal Insufficiency

2011-12-16T06:15:00.001-06:00

Patients with Cushing's disease and those with Addison's disease face the same bully every day.

Cortisol is an omnipresent force, always lurking and lingering, so ready to remind you that you do not control your body. The cortisol does.

Cortisol runs through the bodies of healthy people and continues about its job without notice. Its predictable, daily function is required to sustain life.

For those enslaved by the adrenals' whims, it is a constant thorn in your side. You see, Cushie bodies make too much cortisol, while Addisonians make no or insufficient cortisol. While each disease respond differently to the cortisol malfunction, both patient sets deal with the life-threatening risks of adrenal crises.

Cushies walk in the shoes of their Addi cousins after pituitary surgery (to stop excess cortisol production by renegade ACTH tumors) or adrenal surgery (to remove the cortisol-making once and for all by removing adrenals. Just look what happens when adrenal glands do not respond to signals from the pituitary gland properly.

Both Cushies and Addis can suffer symptoms of low cortisol and the devastating consequences if these symptoms are not treated in time.

What starts as mild adrenal insufficiency can turn into acute adrenal crisis very quickly, putting the patient at risk for shock and sudden death. Think you can go to a paramedic or hospital for help. Think again. As you may have caught on by now, there is nothing easy... or even FAIR... about Cushing's disease.

Imagine if the medics in the ambulance didn't know what could save your life.
Imagine if the medics knew, but the state has laws in place that prevent them from keeping a supply of it in the ambulances.
Imagine if the medics refuse to administer the Solu-Cortef injectible medication you have with you, along with an adrenal crisis letter from your physician, but too disoriented to give yourself, because of state regulations limiting its availability
Imagine getting to the hospital only to find emergency room staff ignore both your CRISIS letter from your physician and medical alert bracelets, necklaces, and even tattoos-- all intended to save your life and speak for you when you can not.
Imagine waiting for hours and hours for your medical team to run enough tests to *believe* you are sick, and then to follow the still squabble over following the protocol outlined in your crisis letter.
Imagine if the hospital, like the ambulance, does not carry the Solu-Cortef injectable at all, or, insist on giving you a lesser grade of cortisol shot that acts much more slowly and will not bring you out of the near coma you are in or about to fall into, despite clear instructions in the crisis letter
Imagine your friend or family member getting hauled away by security and thrown out of the hospital for advocating emphatically on your behalf.

THIS JUST CAN NOT CONTINUE TO HAPPEN ** ANY MORE. **

Do you think I may be overdramatizing things?! Well, I can add a name to every *Imagine* line above, a name of a person who nearly died because solu-cortef and its life-saving formula was kept from them from ambulances and hospitals who are supposed to protect and save them. If you are the prove-it-to-me-one-more-time type, you can read plenty of personal testimonials for yourself.

Access to Solu-cortef should be as standard in ambulances and ERs as glucagon shots for diabetics. Deaths due to adrenal insufficiency heartbreaking and so preventable.

I want to thank the Adrenal Insufficiency United organization for creating the wonderful video below. On behalf of Cushing's patients everywhere, we thank you for their efforts to increase access to Solu-Cortef for all patients with unpredictable or absent cortisol production.

In addition, a shout out to the CARES Foundation which supports patients with congenital adrenal hyperplasia. Like the Adrenal Insufficiency United organization, CARES advocates for the widespread availability of Solu Cortef in ambulances and hospitals -- without question -- for any patients who may face low cortisol levels.

In light of the dangers presented in this post, it is always best to administer Solu-cortef before you even go for medical help. The patient or the caregiver must be ready to administer the injection on his/her own. Here are some instructions to download, so you are prepared to save your life no matter what.

My Friends with Adrenal Insufficiency

2011-12-16T06:02:00.001-06:00

Patients with Cushing's disease and those with Addison's disease face the same bully every day.

Cortisol is an omnipresent force, always lurking and lingering, so ready to remind you that you do not control your body. The cortisol does.

Cortisol runs through the bodies of healthy people and continues about its job without notice. Its predictable, daily function is required to sustain life.

Both Cushies and Addis can suffer symptoms of low cortisol and the devastating consequences if these symptoms are not treated in time.

Imagine if the medics in the ambulance didn't know what could save your life.
Imagine if the medics knew, but the state has laws in place that prevent them from keeping a supply of it in the ambulances.
Imagine if the medics refuse to administer the Solu-Cortef injectible medication you have with you, along with an adrenal crisis letter from your physician, but too disoriented to give yourself, because of state regulations limiting its availability
Imagine getting to the hospital only to find emergency room staff ignore both your CRISIS letter from your physician and medical alert bracelets, necklaces, and even tattoos-- all intended to save your life and speak for you when you can not.
Imagine waiting for hours and hours for your medical team to run enough tests to *believe* you are sick, and then to follow the still squabble over following the protocol outlined in your crisis letter.
Imagine if the hospital, like the ambulance, does not carry the Solu-Cortef injectable at all, or, insist on giving you a lesser grade of cortisol shot that acts much more slowly and will not bring you out of the near coma you are in or about to fall into, despite clear instructions in the crisis letter
Imagine your friend or family member getting hauled away by security and thrown out of the hospital for advocating emphatically on your behalf.

THIS JUST CAN NOT CONTINUE TO HAPPEN ** ANY MORE. **

Access to Solu-cortef should be as standard in ambulances and ERs as glucagon shots for diabetics. Deaths due to adrenal insufficiency heartbreaking and so preventable.

Cushing's Gets Much Needed Media Attention

2011-11-21T20:35:00.001-06:00

Symptoms And Causes Of Cushing’s Syndrome

Click to see the November 21, 2011 article in Men's Cosmo.

Cushing’s syndrome is a hormonal disorder that occurs when a person is exposed to excessive cortisol hormone over a long time. This condition is also sometimes called hypercortisolism. Generally such a condition occurs when a person goes through long term use of oral corticosteroid. The situation arises when the body starts making more cortisol than required.

Why is Cortisol Necessary?

Cortisol is a steroid hormone that is produced by the adrenal glands. The main job of this hormone is to reduce stress. It does this function by increasing blood sugar and suppressing the immune system of the body.

It also aids in the metabolism of protein, fat and carbohydrates. But in the process it also decreases the formation of bone. Cortisol production is increased between the 30th and 32nd week of pregnancy when it aids in maturation of the lungs of the fetus.

Causes of Cushing’s Syndrome

The common causes of Cushing’s syndrome are overuse of corticosteroid medications like prednisone which are used for treatment of various conditions like asthma, rheumatoid arthritis and also as immunosuppressant drug. However, that is not always the case as sometimes the body starts abnormal behavior and produces cortisol more than required by the body.

The commonest of such disorders is pituitary adenoma. Such adenomas are non-cancerous tumors in the pituitary glands which start secreting increased amount of ACTH (adrenocorticotrpoin) or the hormone that triggers cortisol release by the adrenal glands. Such a condition is most of the times seen in women and this particular condition is also called Cushing’s disease.

Sometimes similar tumors can occur outside the pituitary gland and still cause excess secretion of ACTH. Often lung tumor can cause almost half of these cases and is seen mostly in men. Tumors of the adrenal gland are also responsible and seen mostly in people over 40 years of age. Cancerous growth in the adrenal glands can also cause Cushing’s syndrome but is it the rarest of causes.

Symptoms of Cushing’s Syndrome

The commonest symptom of Cushing’s syndrome is obesity and changes in the skin quality. The person affected with the syndrome turns obese gradually and the fat deposits are generally seen in the face, shoulders, upper back and mid section.

Pink and purple stretch marks are noticed on the abdomen, breasts, arms and thighs. The skin becomes thin and gets bruised easily. Healing of cuts and wounds slow down and the person develops acne. While the women experience abnormal growth of facial and body hair and irregular menstruation, the men face decrease in libido, fertility and erectile dysfunction.

The people suffering from Cushing’s syndrome also feel weakness of muscle, fatigue, headache, high blood pressure, high blood sugar, anxiety,depression, irritability, loss of emotional control and loss of bone mass. Weakening of bones can go to such extent that the person may face difficulty even when getting up from chair or bending to pick up something.

Treatment of Cushing’s Syndrome

The basic treatment of Cushing’s syndrome is decreasing the secretion of cortisol. For this the easiest method is stopping the uses of corticosteroid. In patients who are using it, abrupt stopping can lead to complications. So it is best for the doctor to control the withdrawal of the steroid.

However, when the cause is a tumor then the only way is to remove it. Generally medication, radiation or surgery is used to do it depending on the condition of the tumor. Sometimes medications like ketoconazole, metyrapone and mitotane are also used to treat Cushing’s syndrome.

Hope & Stem Cells

2011-11-10T10:43:00.001-06:00

Lab-grown hormone factory put to work

http://www.newscientist.com/mobile/article/mg21228384.700-labgrown-hormone-fa...

Pituitary Glands Made from Stem Cells

2011-11-09T14:44:00.002-06:00

This is the best news I have heard in a long time.

"Pituitary glands grown from mouse embryonic stem cells

If the same trick can be repeated for human pituitary glands it could transform the treatment of debilitating hormone disorders"

09.11.11
Updated 20.36

Mouse pituitary tissue grown from embryonic stem cells. Fully grown glands produced hormones when transplanted into mice. Photograph: Yoshiki Sasai/RIKEN

David Derbyshire

The Guardian, Wed 9 Nov 2011 18.26 GMT

Scientists have grown working pituitary glands in the lab that could potentially transform the treatment of people with a range of debilitating hormone disorders.

The team of Japanese researchers grew the tiny hormone-secreting organs using stem cells taken from a mouse embryo. When the tissue was transplanted into mice with pituitary gland defects, it raised levels of the missing hormones in their bodies.

Dr Yoshiki Sasai, who led the study at the RIKEN Centre for Developmental Biology in Kobe, Japan, said: "It is difficult to guess how long it will take, but we hope that we can produce human pituitary tissue in the next three years." It would take longer to develop techniques to transplant the cells, he added.

The creation of spare body parts for transplant is one of the goals of stem cell science. Stem cells are the body's "master cells" and can turn into a range of different types of tissue, such as brain, muscle or pancreatic cells.

Any tissue or organs grown from patients' own stem cells would not be rejected by the body, doing away with the need for immunosuppressant drugs.

Pituitary glands – the oval, pea-sized organs at the base of the brain – are a particular challenge for stem cell researchers because they are so complex. They have two distinct parts and secrete at least eight hormones regulating growth, fertility, breast milk production, blood pressure, contractions during childbirth, temperature and water balance.

Using mouse stem cells arranged in a three dimensional culture, Dr Sasai's team mimicked the way pituitary glands develop in the embryo. The resulting tissue contained all five types of cell found in a normal gland and took around three weeks to grow, the scientists report in the journal Nature.

"We have made hundreds of pituitary glands from embryonic stem cells," said Dr Sasai. When the tissue was transplanted into mice with pituitary defects, levels of missing hormones in their bodies rose to normal.

Although the researchers used embryonic stem cells in their experiment, they believe the technique could work with stem cells derived from adult tissue – so-called induced pluripotent stem cells. That would avoid the ethical concerns some people have about using human embryos in research and therapies.

Even if the scientists can grow a human pituitary, they still face major obstacles in creating a safe and efficient way to transplant it, Dr Sasai said. However, he believes lab-grown glands could lead to treatments for growth hormone deficiencies and damage to the pituitary glands caused by surgery and Sheehan's syndrome.

Women with Sheehan's syndrome, which results from blood loss during childbirth, have problems breastfeeding, suffer tiredness, weight gain, constipation, low blood pressure and slowed thinking.

Prof Robin Lovell-Badge, one of Britain's leading stem cell experts at the Medical Research Council's National Institute for Medical Research in London, said: "It is unlikely that these in vitro-derived pituitaries are fully developed and make hormones in precisely the same way as normal.

"However, the fact that they got as far as they did is impressive. It suggests that there is a fair amount of self-organisation, which means that it might be easier than we thought to build not just pituitaries, but also other organs from embryonic stem cells and induced pluripotent stem cells – as long as they are not too complex.

"It also opens up new possible ways for treating patients with defective or missing pituitary glands."

I'm Back, Giving Testing a Final Go

2011-10-06T01:10:00.001-05:00

Hi to everyone. I thank all of you for reading along and for all the letters. I will write back soon. If I don't reply, please feel free to resend. I accept friendly reminders.

I wanted to share this image. It made me laugh but then quickly made me upset. Not even the coveted 'I told you so' is worth it. Join me in Cushing's awareness. Let's prove them all wrong.

Please promise me AND yourself that you will fight until you feel better.

I'll be around more this fall. I'll be testing for high cortisol (already have several high ACTH values even after two pituitary surgeries) and sharing all my Cushie goodies I've rounded up over the summer.

~Melissa

PARTICIPATE: Quality of Life Survey

2011-06-06T01:52:00.001-05:00

I encourage every Cushing's patient to complete this National Institutes for Health survey* regarding quality of life. We must seize these opportunities to educate the medical community. The Cushing's we experience is drastically more complicated than the Cushing's they study. Please make your voice heard. ~m

Click here to go to NIH Cushing's survey.

Information about this survey and your consent to participate

Patients with Cushing's syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing's syndrome. We want to learn more about the patients' experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Click here to go to NIH Cushing's survey.

** Thanks to MaryO for sharing this with us.

Glimmer of Hope: Delayed Remission

2011-05-19T14:54:00.001-05:00

Thank you to my Cushie friend Debra for sharing this article. You gotta believe. ~m

Delayed Remission after Transsphenoidal Surgery in Patients with Cushing’s Disease

Elena Valassi, Beverly M. K. Biller, Brooke Swearingen, Francesca Pecori Giraldi, Marco Losa, Pietro Mortini, Douglas Hayden, Francesco Cavagnini and Anne Klibanski

Published online before print January 15, 2010, doi: 10.1210/jc.2009-1672 The Journal of Clinical Endocrinology & Metabolism February 1, 2010 vol. 95 no. 2 601-610

Full text available for free in pdf here.

Abstract

Background: Transsphenoidal surgery (TSS) is the treatment of choice for Cushing’s disease (CD). Postoperative hypercortisolemia mandates further therapy.

Objective: The aim of the study was to characterize patients without immediate postoperative remission who have a delayed decrease to normal or low cortisol levels without further therapy.

Design and Setting: A retrospective case series was conducted at three tertiary care centers.

Patients and Intervention: We reviewed the records of 620 patients (512 females, 108 males; mean age, 38 ± 13 yr) who underwent transsphenoidal pituitary surgery for CD between 1982 and 2007.

Results: Outcomes were classified into the following three groups based upon the postoperative pattern of cortisol testing: group IC (immediate control) included 437 of the 620 patients (70.5%) with hypocortisolism and/or cortisol normalization throughout the postoperative follow-up; group NC (no control) included 148 of 620 patients (23.9%) with persistent hypercortisolism; and group DC (delayed control) included 35 of 620 patients (5.6%) who had early elevated or normal UFC levels and developed a delayed and persistent cortisol decrease after an average of 38 ± 50 postoperative days. The total rate of recurrence was 13% at a median follow-up time of 66 months after TSS; the cumulative rate of recurrence at 4.5 yr was significantly higher in group DC vs. group IC (43 vs. 14%; P = 0.02).

Conclusions: Hormonal assessment in the immediate postoperative period after TSS for CD may be misleading because delayed remission can occur in a subset of patients. Expectant management and retesting may spare some patients from unnecessary further treatment. Optimal timing to determine the need for further therapy after TSS remains to be determined.

Received August 5, 2009.
Accepted November 23, 2009.

- Author Affiliations

Neuroendocrine Unit (E.V., B.M.K.B., A.K.) and Department of Neurosurgery (B.S.), Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts 02114; Chair of Endocrinology (E.V., F.P.G., F.C.), Universita’ di Milano, Ospedale San Luca, Istituto Auxologico Italiano, Istituto di Ricovero e Cura a Carattere Scientifico, 20149 Milan, Italy; Department of Neurosurgery (M.L., P.M.), Universita’ Vita-Salute, Istituto Scientifico San Raffaele, 20132 Milan, Italy; and Biostatistics Center (D.H.), Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts 02114

Address all correspondence and requests for reprints to: Anne Klibanski, M.D., Neuroendocrine Unit, Massachusetts General Hospital, 55 Fruit Street, Bulfinch 457B, Boston, Massachusetts 02114. E-mail: aklibanski@partners.org.

Why Obesity Is A Disease

2011-05-19T11:08:00.001-05:00

Preach it. I totally agree.

		SCOTT KAHAN, M.D.: Why Obesity Is A Disease
	Obesity is a chronic medical condition -- from a technical perspective, obesity fits any reasonable definition of disease.

Dumb da Dumb Dumb..... DUMB!!!!

2011-05-18T19:47:00.001-05:00

This is what it sounds like when the President of the National Honor Society cries.
Whaaaaa waaaaaaaaaa whaaaaaa waaaaaaaaaa

"Cognitive function, reflecting memory and executive functions, is impaired in patients despite long-term cure of Cushing’s disease. These observations indicate irreversible effects of previous hypercortisolism on cognitive function and, thus, on the central nervous system."

Subtle Cognitive Impairments in Patients with Long-Term Cure of Cushing’s Disease

Journal of Clinical Endocrinology & Metabolism. June 2010.|Tiemensma et al. 95 (6): 2699
http://jcem.endojournals.org/content/95/6/2699.abstract

Jitske Tiemensma,Nieke E. Kokshoorn,Nienke R. Biermasz,Bart-Jan S. A. Keijser,Moniek J. E. Wassenaar,Huub A. M. Middelkoop,Alberto M. Pereira andJohannes A. Romijn

Abstract

Context and Objective: Active Cushing’s disease is associated with cognitive impairments. We hypothesized that previous hypercortisolism in patients with Cushing’s disease results in irreversible impairments in cognitive functioning. Therefore, our aim was to assess cognitive functioning after long-term cure of Cushing’s disease.

Design: Cognitive assessment consisted of 11 tests, which evaluated global cognitive functioning, memory, and executive functioning.

Patients and Control Subjects: We included 74 patients cured of Cushing’s disease and 74 controls matched for age, gender, and education. Furthermore, we included 54 patients previously treated for nonfunctioning pituitary macroadenomas (NFMA) and 54 controls matched for age, gender, and education.

Results: Compared with NFMA patients, patients cured from Cushing’s disease had lower scores on the Mini Mental State Examination (P = 0.001), and on the memory quotient of the Wechsler Memory Scale (P = 0.050). Furthermore, patients cured from Cushing’s disease tended to recall fewer words on the imprinting (P = 0.013), immediate recall (P = 0.012), and delayed recall (P = 0.003) trials of the Verbal Learning Test of Rey. On the Rey Complex Figure Test, patients cured from Cushing’s disease had lower scores on both trials (P = 0.002 and P = 0.007) compared with NFMA patients. Patients cured from Cushing’s disease also made fewer correct substitutions on the Letter-Digit Substitution Test (P = 0.039) and came up with fewer correct patterns on the Figure Fluency Test (P = 0.003) compared with treated NFMA patients.

Conclusions: Cognitive function, reflecting memory and executive functions, is impaired in patients despite long-term cure of Cushing’s disease. These observations indicate irreversible effects of previous hypercortisolism on cognitive function and, thus, on the central nervous system. These observations may also be of relevance for patients treated with high-dose exogenous glucocorticoids.

- Author Affiliations

Departments of Endocrinology and Metabolism (J.T., N.E.K., N.R.B., B.-J.S.A.K., M.J.E.W., A.M.P., J.A.R.) and Neurology (H.A.M.M.), Leiden University Medical Center, 2300 RC Leiden, The Netherlands

Address all correspondence and requests for reprints to: J. Tiemensma, MSc., Department of Endocrinology and Metabolic Diseases C4-R, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands. E-mail: J.Tiemensma@lumc.nl.

CUSHING’S: Relentless and Nefarious

2011-05-16T17:54:00.004-05:00

I am 27 days post op for my second pituitary surgery. I had blood work done on post op day 16 after withholding for 24 hours, aka skipping my afternoon dose of hydrocortisone the day before. Late last Friday, I received some terrible news from my lab results. My body is making too much cortisol and ACTH so soon after pituitary surgery.

04/24/2011 post op day 5 @ 8 am (withheld pm dose on previous day)
cortisol 13.6 (4-22)
acth 24 (5-27)
glucose 96 (65-99)
sodium 142 (135-146)

05/06/2011 post op day 16 @ 8 am (withheld pm dose on previous day)
cortisol 17.1 (4-22)
acth 59 (5-27)
glucose 102 (65-99)
sodium 142 (135-146)

       My cortisol increased to 17.1 in the am, and ACTH is more than twice normal. I did capture some high ACTH values prior to my first pituitary surgery, with one high ACTH during the day, and that was 125 baseline for IPSS. Some daytime values were in the high 20s but not like this. My 4 am ACTH in 2007 were 78 and 105.

** ** ** ** ** ** ** **

       My friend Debra reminded me that a cure for Cyclical Cushing’s is very uncertain, often as low as 30% for the first pituitary surgery. She reviewed the medical literature and read every single study she could find on remission after pituitary surgery for Cushing’s. The highest cortisol value she could find that indicated remission was 14 (post op day 5 cortisol level while withholding HC dose for 24 hours). Mine are 13.6 and 17.1. Debra pointed to this European Journal of Endocrinology article entitled The Prevalence and Characteristic Features of Cyclicity and Variability in Cushing's Disease, which was published in 2009.
       The second pituitary surgery did not cure my Cushing's. There is no other conclusion. I am just heartbroken and devastated about this medical development, even though I have known it was a possibility since 2007.
Cushing’s patients whose bodies will not stop producing cortisol must remove both adrenal glands in order to ultimately stop all cortisol production at the source. Since high cortisol breaks down many body systems, it just not an option to let Cushing’s keep going. So, we trade Cushing’s and high cortisol for Addison’s and low cortisol. REPEAT: I will trade the terribly relentless and rollercoaster cortisol levels of Cyclical Cushing's disease for the unpredictable make-no-cortisol-at-all and hope-there-is-no-emergency-or-trauma Addison's. I am now making plans to have both adrenal glands removed in a procedure called a bilateral adrenalectomy (BLA). NYU’s Department of Surgery posted information on the adrenalectomy procedure.
       Last month, I posted a list of Cushie Warriors – 50 people from around the world who have had to have multiple surgeries in an attempt to rid themselves of Cushing’s. I wish we could get a restraining order for this Cushing’s menace.
       My current dose of hydrocortisone is 15 mg at 8 am and 5 mg at 1 pm. I will taper that dose responsibly but quickly after speaking to my Cushing’s endocrinologist this Wednesday.
       That’s all I have to say about that.

        Melissa

Obesity Research: Consequences vs. Causes

2011-05-07T16:34:00.001-05:00

Obesity is bad, we get that
The Guardian

"People tend not to believe that a medical condition can cause weight gain, but the little-known – and devastating – Cushing'sdisease is one such cause, alongside more well-recognised but not yet fully understood illnesses including hypothyroidism and..."

"The greatest distress for patients is that nobody is sympathetic, including many healthcare professionals. There is a lot to do in terms of challenging perceptions."

http://m.guardian.co.uk/commentisfree/2011/may/04/obesity-causes-dementia-research?cat=commentisfree&type=article

This is your Life.

2011-05-05T01:32:00.001-05:00

Cushing’s Syndrome during Pregnancy

2011-05-05T00:22:00.001-05:00

EXTENSIVE CLINICAL EXPERIENCE

Cushing’s Syndrome during Pregnancy: Personal Experience and Review of the Literature

Cushing’s syndrome (CS) occurs rarely during pregnancy.We investigated and treated four patients with pituitary-dependentCushing’s syndrome during pregnancy over a 15-yr periodat the National Institutes of Health. Except for preservationof menses before conception, our patients presented with typicalclinical features, increased urinary free cortisol, and lossof diurnal variation of cortisol. The diagnosis was facilitated,without complications, by the use of CRH testing and inferiorpetrosal sinus sampling in three women. Transsphenoidal pituitarysurgery achieved remission in three women, but there were twofetal/neonatal deaths. This experience and review of 136 previousreports suggest that: 1) urinary free cortisol in CS patientsoverlaps the normal pregnant range; 2) ACTH levels are not suppressedin adrenal causes of CS, which may be identified by the 8-mgdexamethasone test; 3) inferior petrosal sinus sampling andtranssphenoidal pituitary surgery, the optimal diagnostic testand treatment for nonpregnant patients with pituitary-dependentCushing’s syndrome, can safely facilitate the managementof pregnant patients; and 4) surgery may achieve remission duringpregnancy, but the prognosis for the fetus remains guarded.It is likely that earlier recognition and treatment would improveoutcome. There is a need for development of criteria for interpretationof diagnostic tests and increased consideration of CS in pregnancy.

Check out this original article.

John R. Lindsay, Jacqueline Jonklaas, Edward H. Oldfield, and Lynnette K. Nieman

Reproductive Biology and Medicine Branch (J.R.L., L.K.N.), National Institute of Child Health and Human Development,
and Surgical Neurology Branch (E.H.O.), National Institute of Neurologic Disorders and Stroke, National Institutes of
Health, Bethesda, Maryland 20892-1109; and Georgetown University Medical Center (J.J.), Washington, DC 20057

J. Clin. Endocrinol. Metab. 2005 90:3077-3083 originally published online Feb 10, 2005; , doi: 10.1210/jc.2004-2361

Addison's Disease Poses Risks To Patients

2011-05-04T23:14:00.006-05:00

I am so happy to see this article. Addison's is the opposite of Cushing's. Addison's results from low cortisol levels, and Cushing's results from high cortisol. When a Cushing's patient has a pituitary tumor removed, s/he can suffer from Addison's while the body's hypothalamus-pituitary-adrenal axis regulates itself again. Also, a Cushing's patient who will not stop producing cortisol ultimately has to remove both adrenal glands in order to ultimate stop all cortisol production. This makes the Cushing's patient an Addison's patient for the rest of his/her life. These diseases are inextricably linked, and I am glad that doctors are realizing how life threatening cortisol can be. Patients know it. European doctors know it. Let's hope US doctors will learn quickly, too. ~m

Greater Awareness Needed On Risks That Addison's Disease Poses To Patients

Main Category: Endocrinology
Also Included In: Infectious Diseases / Bacteria / Viruses
Article Date: 03 May 2011 - 0:00 PDT
http://www.medicalnewstoday.com/articles/223926.php

Two new studies presented at the European Congress of Endocrinology in Rotterdam show the possible dangers facing patients with Addison's disease are higher than previously thought. The new research shows that Addison's patients, who have low levels of cortisol produced by the adrenal glands, are more likely to get infections which may provoke life-threatening adrenal crises.

Addison's disease is caused by low levels of the hormone cortisol, produced by the adrenal glands. Without treatment, the condition can be fatal. Patients with Addison's disease can suffer a range of symptoms, including fatigue, dizziness, weight loss, muscle weakness, mood changes and the darkening of regions of the skin if they don't receive treatment. The most famous Addison's disease sufferer was John F Kennedy, but it is a comparatively rare condition, affecting about 1 person in 15,000.

Dr Stefanie Hahner, working at University of Würzburg, Germany, looked at the incidence of adrenal crisis in 472 German patients with Addison's disease. An adrenal crisis is a potentially life-threatening condition which occurs when cortisol levels fall dangerously low, requiring an immediate injection of hydrocortisone. Dr Hahner found that 62 of the patients had an adrenal crisis over the two-year period of the prospective study, with almost two-thirds of those needing to be hospitalised and 9.5% being treated in intensive care. Two patients died from adrenal crises during the study. The study also found that many patients were unprepared to deal with the threat to life presented by crises and further patient education programmes may be warranted.

Researcher Dr Stefanie Hahner said:

"The number of adrenal crises was higher than we expected from previous studies. Infectious disease provoked 39% of the crises, with psychological stress also causing problems. Ninety-five percent of the patients were aware of the dangers of an adrenal crisis, but only 28% had the emergency injection set. This shows that these crises are largely caused by infectious diseases and stress, but also that patients need to be better prepared to respond to the crises when they arise and that infectious disease has to be treated early and aggressively in this patient group."

In another study presented at the European Congress of Endocrinology from the University of Utrecht, The Netherlands, Dr Lisanne Smans showed that patients with Addison's disease were more at risk of suffering infections than the rest of the population.

She identified 390 Addison's patients from pharmacy records and compared the risk of infections and hospital admissions. Dr Smans found that the risk of infectious disease was 1.5 times that of a control population, (overall incidence rate of 59.2/100 person-years). In addition, Addison's patients were significantly more likely to be hospitalised for infectious disease than control groups (3.8/100 person years for Addison's patients, versus 0.8/100 person years for control groups).

Researcher Dr Lisanne Smans commented:

"We need to raise awareness amongst doctors and patients of the risk of infections in Addison's patients compared to the general population. We now want to move on to see whether influenza vaccinations can help this patient group."

Commenting on the two papers, Professor Peter Trainer, Chair of the European Congress of Endocrinology Programme Organising Committee, said:

"These studies reinforce our knowledge of the risks that infections pose to patients with Addison's disease and serious consequences that can arise. We need to look at ways of making both the medical community and patients more aware of the appropriate medical action needed to treat an adrenal crisis. This really is a case where quick action can save lives. All patients with Addison's disease should carry an emergency kit containing a hydrocortisone injection that can be given immediately if they fall ill."

Sources: European Society of Endocrinology, AlphaGalileo Foundation.

Hair Samples: Better Testing

2011-05-04T23:07:00.001-05:00

My endocrinologist in Los Angeles has been working on a similar study here in the US. I hope that patients in the future will not have to undergo the ridiculous rigmarole that I faced (four years of testing). I continue to grow my hair out in hopes that I can contribute a hair sample to some study... one day. ~mm

New Method To Measure Cortisol Could Lead To Better Understanding Of Development Of Common Diseases

Main Category: Endocrinology
Also Included In: Anxiety / Stress; Heart Disease; Preventive Medicine
Article Date: 03 May 2011 - 0:00 PDT
http://www.medicalnewstoday.com/articles/223924.php

A new method to measure the amount of the stress hormone cortisol found in the body over the long term could lead to new research avenues to study the development of common conditions, such as heart disease, diabetes and depression. In results announced at the European Congress of Endocrinology, researchers found that hair can be used to create a retrospective timeline of exposure to cortisol. Cortisol is implicated in the development of many common conditions and this new technique could allow us to study its role better.

Cortisol is a hormone produced by the adrenal glands and its primary role is to help maintain body metabolism. If the body is put under (psychological or physical) stress, cortisol levels increase to allow the body to respond to the situation. Currently the standard method to measure cortisol levels is to take a blood or saliva sample. However, since cortisol is released in a circadian rhythm and with pulses throughout the day, levels can fluctuate considerably, meaning it is difficult to estimate an individual's long-term exposure to cortisol through blood and saliva tests alone. Finding a new non-invasive method to measure long-term cortisol exposure could have a major impact on our ability to determine the role of cortisol in the development of many common diseases, such as cardiovascular disease, diabetes and depression.

Dr Laura Manenschijn and her team from Erasmus MC in The Netherlands collected scalp hair samples from 195 healthy individuals and from 11 patients with Cushing's syndrome (a condition where the adrenal glands produce too much cortisol) and 3 patients with Addison's disease (a condition where the adrenal glands are unable to produce cortisol) and tested their cortisol levels. All participants filled out a questionnaire to assess what products and treatments they used on their hair. A subset of 46 participants also had their waist and hip measurements taken.

The team found that hair cortisol levels correlated positively with waist to hip ratio (r=0.425, p=0.003) and waist circumference (r=0.392, p=0.007), meaning people with higher exposure to cortisol showed higher abdominal obesity. In individuals with Cushing's syndrome the levels of cortisol in hair were significantly higher than in healthy individuals (p<0.0001). In long hair of individuals with Cushing's syndrome and Addison's disease, the levels of hair cortisol corresponded with clinical records of the amount of cortisol they had been exposed to. Additionally, in long hair of healthy women, the team were able to record alterations in cortisol exposure due to psychological stress over time. Hair cortisol levels were not influenced by gender (p=0.353), hair colour (p=0.413), frequency of hair wash (p=0.673) or hair products (p=0.109), although there was a slight, borderline significant, decrease in cortisol levels in hair that was treated (dyed/bleached) (p=0.08).

This is the first time that cortisol measurements taken from hair have been shown to correlate with known tissue effects of cortisol, such as abdominal obesity, and to provide a retrospective timeline of exposure to this hormone. The next step is to use this technique in larger studies to examine the role of long-term cortisol exposure in the development of cardiovascular disease and depression. Ultimately, this could lead to a better classification of individuals at risk of common conditions and novel approaches to prevent these.

Researcher Dr Laura Manenschijn from Erasmus MC said:

"We have suspected for a while that cortisol may be implicated in the development of many common conditions, such as heart disease, diabetes and depression. However, until now, doctors have not been able to accurately measure cortisol exposure over the long-term and so research into this has been limited.

"Our results are very exciting as they show that measuring the amount of cortisol in hair can potentially be used to monitor a person's long-term exposure to cortisol. This technique could lead to many potential uses in clinical research and has the additional benefit that it is easy to use and non-invasive.

"The results of this study show that hair cortisol is a reliable measure of long-term cortisol exposure. Now, we would like to use this tool in larger studies to examine the role of cortisol in the development of conditions such as cardiovascular disease and depression."

Sources: European Society of Endocrinology, AlphaGalileo Foundation.

Cushing's Disease: Unraveling a Medical Mystery

2011-05-04T22:52:00.001-05:00

I found this video tonight when doing some research online. You know you will be sick a while when your disease is called a "medical mystery."

Cushing's Disease: Unraveling a Medical Mystery

The goal of the program is to educate viewers on the mysterious condition known as Cushing's disease. We will discuss why the diagnosis is often delayed: many patients can have it for five or-ten years before they are correctly diagnosed. The reason is the symptoms of Cushing's Disease are similar to those of other conditions. But as viewers will hear from experts Cushing's Disease can be treated and in some cases a full recovery is possible. In this program we will also explore the history of Cushing's Disease which is named for Harvey Cushing considered by many to be "the father of modern neurosurgery".

See 26 minute video, "Cushing's Disease: Unraveling a Medical Mystery."

~mm

Recovery: Post Op Day 14

2011-05-04T22:29:00.002-05:00

Hi everyone. I felt pretty good up until yesterday. Luckily, I had a follow up appointment with my endocrinologist who diagnosed me with Cushing's. He's a Cushing's specialist. I always feel so relieved after speaking with him.

I thought I would share my questions and his responses. It may help others figure things out post op. ~m
*************

Complications from surgery -- diabetes insipidus. Sodium levels in the hospital were 150, so they gave me DDVAP. Sodium levels dropped to 145 before I was discharged from hospital (post op day 3).

Improvements after surgery
Buffalo hump feels less rigid, skin not pulled so tight.
Belly fat is loose and jiggly. Stomach feels deflated. Before surgery, belly tight as a drum from excess cortisol. Doc says this is a good sign.

Lab work -- 13.6 cortisol, 24 ACTH (post op day 5 after withholding hydrocortisone dose in day 4 pm)

Concerned that I’m feeling bad now. I am 14 days post op pituitary surgery. Felt OK before yesterday. Not cartwheels but not in pain either. Yesterday, I woke up with a mild headache and stiffness in my neck and shoulders. I went to the chiropractor but it didn't offer much relief. I took a 4 hr nap and had 9 hours of sleep, but my symptoms remain. Today, my symptoms are the same, even after a 2 hour nap.

Mild burning/itching in sinus
Headache
Pressure in head, upside down
Overall body aches
Stiff neck and shoulders
Sore back
Preference for dark rooms, no noise
No drainage in throat so probably not a cerebrospinal fluid leak (CSF leak)

Doc said feeling bad was a great sign. He is concerned because I am showing signs of hypoatremia, or low sodium levels. This is common after pituitary surgery, especially for those of us who experienced diabetes insipidus which leads to hyperatremia, or high blood sodium levels. He said he often sees these symptoms happen right around this time (days 7-14 post op). At 8 am on Friday, I will have blood drawn for an electrolyte panel (includes sodium) with cortisol and ACTH after withholding 1 pm dose on Thursday. He suggests that when I drink fluids, I drink Gatorade only, no water, for the next two days. This will help rebalance my electrolytes.

University of California at San Francisco's Pituitary Center mention this in their post surgical instructions:

Some patients develop disorders of salt and water metabolism following pituitary surgery. Headache, nausea, vomiting, confusion, impaired concentration, and muscle aches might be due to hyponatremia (low blood sodium levels). This disorder typically occurs 7 to 10 days after surgery and is more common in patients who have had surgery for Cushing's disease. If you develop these symptoms, contact us immediately. Excessive urination, thirst, and the need to ingest large quantities of fluids might be related to the onset of diabetes insipidus or diabetes mellitus. These disorders put you at risk for dehydration. These symptoms require urgent evaluation and determination of the underlying cause so that appropriate treatment may be given.

I’m taking 10 mg Ambien sleeping pills at night. I tried a few nights without them and I didn’t sleep.
Doc asked if I had any other Cushing’s symptoms, as perhaps too much hydrocortisone was keeping me up at night. I told him I had no other symptoms, and I had lost 6 pounds. A person doesn’t lose weight with Cushing’s! So, Doc suggested I move dose my 2 pm dose to 1 pm. This will hopefully allow the cortisol levels to be low enough for me to sleep at night.

Dose schedule – can I reduce my hydrocortisone dose now, 14 days post op or wait a few days until the weekend? What are the next dose levels?

Do not drop more than 2.5 mg of cortef at a time.
Currently on 20 / 5
Stay at 20 / 5 -- next few days, get through the next 8 am blood draw this Friday
17.5 / 5 -- stay at this dose for 10-14 days
15 / 5 -- stay at this dose for 10-14 days
Appointment with Doc before dropping dose any lower

When do I need to have an overall hormone lab panel done? How far post op? I haven’t done my labwork scheduled for after my appointment in January 2011.
Do this 6 weeks post op, or June 1, 2011.

When do I test? Do I need to test 17-OHS or 8 am cortisol or 24hr UFC when dropping dose of Cortef?
No

~Moxie Melissa

93 Years Old and Still Dancing

2011-05-04T22:17:00.002-05:00

I found this while researching low sodium levels. I like this lady. This made me smile.

New York Times' article: Doctors Say Don't, and the Patient Says Do

''You see,'' she said, ''we patients are not just statistics. We don't always behave the way studies predict we will.''
Remember, you know your body best. Don't let anyone tell you otherwise.
~m

Cushing's in the News

2011-05-04T21:38:00.001-05:00

This beautiful and sweet gal had the same pituitary surgery as I did two weeks ago.

Dramatic difference in appearance. She gained 70 pounds. I've gained 100. Stupid Cushing's disease.

~Moxie Melissa

Think Like a Doctor: A Litany of Symptoms Solved! - NYTimes.com

2011-04-27T13:35:00.001-05:00

Thank you to Dr. Sanders and the New York Times for shining a spotlight on Cushing's patients and offering a different perspective for their family and friends who struggle to support them. -m

EXCERPT: With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Most of the time, that kind of piecemeal medicine works just fine. But the problem is that the cases in which a different approach is required often are tough to distinguish from the bread-and-butter stuff we see every day.

April 21, 2011, 8:27 AM

Think Like a Doctor: A Litany of Symptoms Solved!

By LISA SANDERS, M.D.

On Wednesday I challenged readers to solve a complicated case of a 76-year-old woman who became physically and mentally debilitated over a matter of months.

More than 500 readers weighed in with diagnoses that included porphyria, thrombotic thrombocytopenic purpura and lupus. As of late Wednesday night, 15 readers had come up with the right diagnosis. And the winning answer is:

Diagnosis: Cushing’s syndrome.

The first answer came early. At 12:54 a.m. Eastern time, Dr. Elizabeth Neary, a pediatrician in Madison, Wis., was the first reader to put all the patient’s symptoms together and reach the correct diagnosis.

The wide range of complaints that characterize Cushing’s syndrome was first described by Dr. Harvey Cushing in 1932. In this disease, the adrenal glands churn out too much cortisol, an essential hormone involved in our body’s response to stress. Cortisol helps maintain blood pressure, reduces the immune system’s inflammatory response and increases blood sugar levels — all vital processes for helping our bodies cope with biological and environmental stress.

But long-term exposure to high levels of cortisol can cause osteoporosis, diabetes, high blood pressure, muscle weakness, memory loss and psychiatric disease. It causes the skin to thin and weaken, making it susceptible to bruises that are often dark and dramatic looking. The lesions on this patient’s arms and legs were signs of this.

Cushing’s syndrome is unusual, but a milder version of the disease can be seen in patients who use steroid hormones like prednisone for the treatment of asthma, rheumatoid arthritis or other inflammatory diseases. However, in this case, the syndrome is believed to have been caused by a tiny tumor that was triggering the constant release of high doses of cortisol.

How the Diagnosis Was Made:

When the patient and her two daughters arrived at Waterbury Hospital, Dr. Rachel Lovins met them in the emergency room. She had been introduced to their mother some years earlier, but now she didn’t recognize the woman who sat before her in the wheelchair.

She had gained a lot of weight, her face was much rounder than Dr. Lovins remembered, and her hair, which had been dark and curly, was thin, gray and uncombed. Over the past year or so, Dr. Lovins had heard her friends talk about their mother’s weakness and decline. Seeing her now, it was clear that her illness had taken its toll. Dr. Lovins excused herself to allow the patient to change into her hospital gown. She would see her again once she had been evaluated in the E.R. and admitted to the hospital.

When she returned later, she stood in the doorway and watched as Dr. Chris Mikos, an E.R. physician, lifted the woman’s hospital gown to examine her abdomen. When he did that, Dr. Lovins saw that the woman had red, almost purple stretch marks on her abdomen.

Suddenly the whole case made sense. Dr. Lovins realized the patient might have Cushing’s syndrome. These stretch marks, known as striae, are the result of the thinning of the skin caused by the excess cortisol. It’s a classic finding in Cushing’s. The patient’s primary doctor may not have seen these marks because she probably didn’t have this debilitated elderly woman change into a gown for every visit.

The test used to look for Cushing’s syndrome is called the dexamethasone suppression test. In this test, you give the patient a dose of a steroid hormone, dexamethasone. If the patient has a normal stress hormone system, then the amount of cortisol in the body will drop dramatically as the body reacts to the steroid and begins to suppress its own cortisol production. A normal patient would post a reading of less than five when it’s measured several hours into the test. This patient’s cortisol was eight times that.

Most of the time, Cushing’s syndrome is caused by a tumor in the pituitary gland in the brain, which in turn causes the adrenal gland to overproduce cortisol. In these cases, surgical removal of the tumor will cure Cushing’s.

But in this case, no tumor was found in the pituitary or elsewhere in the patient’s body. Even so, her doctors still believe that a tumor is triggering the excessive cortisol release, but the tumor is too small to locate.

This patient was started on a medication that prevents the overproduction of cortisol, but she had to stop because of side effects. She is waiting to start the next medicine. If that fails, she will have surgery to remove her adrenal glands. When I saw her last she was doing better but wondered out loud whether she would ever walk again.

Why It Was a Difficult Case:

Because cortisol is a hormone that affects every part of the body, the effects of Cushing’s syndrome are wide ranging, and there is no single symptom that announces that a patient has the disease.

Some of this patient’s complaints were pretty common for a woman her age. She’d gained weight. She was tired. She was depressed. She had high blood pressure. She had cataracts. She had swelling in her legs. All of these are symptoms of Cushing’s, but they are also common in patients without Cushing’s.

On the other hand, she had some unusual problems as well. Her muscles were weak. She had a high white blood cell count. She’d had a gastrointestinal bleed. Still, it wasn’t until you put it all together that it became clear that this woman’s many health problems were all related to Cushing’s.

The patient’s oldest daughter sent an e-mail to her friends telling the story of her mother’s ordeal and of her own frustration in pursuing this unifying diagnosis.

We were told that her psychological state, her neurological problem, her circulation issues and her excessive bleeding were an unrelated bunch of unfortunate circumstances conspiring to make this woman ill. “It happens when you are old,” we were told more than once.

With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Readers who come to this column already know it will highlight an unusual case, and as a result, you are ready to take on all the exotic possibilities. Because of that, you are way ahead of the doctor who has to figure out which patient, out of all the patients she’s seen that day, needs something special. That recognition is the start of diagnosis.

http://well.blogs.nytimes.com/2011/04/21/think-like-a-doctor-a-litany-of-symptoms-solved/?ref=health

Think Like a Doctor: A Litany of Symptoms - NYTimes.com

2011-04-27T13:24:00.001-05:00

This is so much fun -and so important to get the word out. Plus, this shows how much a patient suffers while them doctors fail to diagnose and treat the disease. SuRpRiSe -- the symptoms don't get better.

http://well.blogs.nytimes.com/2011/04/20/think-like-a-doctor-a-litany-of-symptoms/

April 20, 2011, 12:02 AM

Think Like a Doctor: A Litany of Symptoms

By LISA SANDERS, M.D.

Apr. 21 Update | Thanks for all your diagnosis submissions! To find the answer to the medical mystery, see “Think Like a Doctor: A Litany of Symptoms Solved!”

The Challenge: Can you solve a medical mystery involving a once healthy older woman who becomes physically and mentally debilitated in a matter of months?

Last month, the Diagnosis column of The New York Times Magazine asked Well readers to sift through a difficult case and solve a diagnostic riddle. Hundreds responded, and several of you succeeded in solving the mystery.

If you missed out, here’s another chance to play medical detective. Below you’ll find a summary of a new case. The first reader to solve it gets a signed copy of my book, “Every Patient Tells a Story,” along with the satisfaction of knowing you could outdiagnose Gregory House. Let’s get started.

The Presenting Problem:

An otherwise healthy 76-year-old woman with intestinal bleeding and complaints of weakness, fatigue and mood swings.

The Patient’s Story:

A fiercely independent and active 76-year-old woman had spent several years caring for her aged mother, who died at 99. Weeks after her mother’s death, she collapses at home. She was found to have bleeding from a collection of abnormal blood vessels (known as arteriovenous malformations) in her colon. In the months after treatment, her red blood count returned to normal, but she complained of persistent fatigue and weakness. She told her daughters that she was more tired than she’d ever been in her life, calling it “the big emptiness.”

The Doctor’s Exam:

Dr. Susan Wiskowski, a family physician in Hartford, had been the woman’s doctor for several years and knew her well. Until this year, the patient had been in good health for her age, with only a few medical problems: high blood pressure, which was controlled with just one medication; hypothyroidism, treated with Synthroid; and cataracts, which had been surgically repaired.
Because heart disease can manifest as weakness and fatigue, particularly in the elderly, Dr. Wiskowski referred her patient for a cardiac workup. She also referred the woman to a hematologist, to check on a slightly elevated white blood count detected during the bleeding episode.

Meeting With the Specialists:

Cardiology: A stress test suggested that the patient had blockages in the arteries to her heart, but an echocardiogram and cardiac catheterization showed no evidence of heart disease. These last tests revealed a narrowing of one of the heart valves, a condition that was probably longstanding but might have been contributing to her fatigue. Read the cardiologist’s report (July 2010).
Hematology: The hematologist could not identify the cause of the slightly elevated white cell count. All his tests, including a bone marrow biopsy, were unrevealing. Read the hematologist’s letter (July 2010).

The Follow-Up:

A few weeks after the cardiac workup, the patient seemed to have some kind of nervous breakdown, something which she had never experienced before. Despite her complaints of weakness, the woman veered between bursts of activity — endlessly cleaning her house, giving large dinner parties — and weeks of isolation and fatigue. She was sometimes elated, even giddy, telling any one who would listen that she’d found where heaven was located. More recently, she’d started talking about giving away all her possessions. Her daughters called 911, and the woman was taken to the emergency room at St. Francis Hospital in Hartford.

Diagnoses:

Hematoma: During her hospital visit, doctors discovered an extensive hematoma on the patient’s right groin and leg, which had developed after the cardiac catheterization a month earlier. She was admitted to the hospital.
Bipolar Disorder: A psychiatrist diagnosed bipolar disorder and started the woman on several medications to stabilize her mood. There was some family history of psychiatric illness.

Additional Test Results:

Treatment of the hematoma kept the woman in the hospital for several days, during which her daughters urged doctors to perform an M.R.I. or some other test that might identify the source of their mother’s persistent weakness and deteriorating health.
A neurologist was consulted. He ordered an M.R.I. of the patient’s brain and cervical spine, which was normal. Read the results on the patient’s discharge summary (Aug. 2010).
Nerve conduction studies that looked at the nerves that power the muscles in her arms and legs were abnormal. Based on these tests, the neurologist thought that she had nerve damage, probably caused by a recent viral infection. Read theneurologist’s letter (Sept. 2010) here.
The neurologist referred her to physical therapy, but it didn’t help. Read the neurologist’s assessment (Feb. 2011) here.

The Woman’s Family Intervenes

Frustrated by their mother’s continued decline, her daughters decided to try to intervene once again. They had jointly been appointed their mother’s health care proxy and made an appointment for her to see her primary care doctor. When Dr. Wiskowski entered the exam room, she expected to see her 76-year-old patient. What she found instead were two middle-aged women she’d never met. They introduced themselves as her patient’s daughters. Their mother didn’t want to come, the older daughter told her, because she was too tired and in too much pain. “I saw her last week; she knows what I look like,” she had told her daughters.
They had come in her stead because over the past months they had seen their mother transformed from the dynamic, energetic and competent woman they’d known all their lives to the disabled and sometimes demented person she’d become, battered and baffled by the many problems she’d developed.
Their mother had gained weight and lost hair, and her legs were swollen and painful. After trying a cane, then a walker, she was now in a wheelchair. The oldest daughter, who lived in California and hadn’t seen her mother in several months, told the doctor she barely recognized her mother this visit. Her mother’s ebullient personality had changed as well, and she was now making plans to move to a nursing home. Was it possible that all their mother’s problems were related?
The doctor listened but told them that she thought all their mother’s symptoms could be explained by the existing diagnoses. Sometimes a combination of illnesses can conspire to make the patient appear very sick, she added.

Strange lesions appeared on the patient’s hand (click to enlarge).

The daughters considered this conclusion sadly. The implication was clear. There was nothing more to be done. As the daughters prepared to leave, one of them showed the doctor cellphone photographs of lesions on the back of their mother’s hand and arm (see photographs at right). Dr. Wiskowski noted that the patient didn’t have these lesions a week earlier when she had last examined her. She told the daughters their mother should be taken to the emergency room to be fully evaluated.

Meeting With the Hospitalist:

Lesions were also present on the arm (click to enlarge).

Instead of going back to the same hospital where their mother had been cared for in the past, the daughters decided to take her to the emergency department of a different hospital in a town nearby where a doctor they knew practiced. Dr. Rachel Lovins ran the hospitalist program at Waterbury Hospital in Waterbury, Conn. (Hospitalists are members of a new specialty of doctors who specialize in caring for patients while they are in the hospital.) Dr. Wiskowski sent over key parts of the patient’s work-up to aid the doctor. This included reports from the specialists, a list of the patient’s medical problems (April 2010) andlaboratory test results (Feb. 2011).

The Challenge: Can you figure out what’s going on with this patient with weakness, psychiatric symptoms and these unusual lesions on her arms and hands?

Rules and Regulations: Post your questions and comments for Dr. Sanders in the Comments section, below. Dr. Sanders will be responding to select questions and comments throughout the day and into the evening. The correct answer to the case will be posted the following day in a separate posting on the Well blog. Select questions and comments from readers may also be included in print form in a coming issue of The New York Times Magazine.

The first reader to identify the correct diagnosis wins a signed copy of Dr. Sanders’s book “Every Patient Tells a Story” (Broadway Books). We will contact you if you are the prizewinner. Readers who enter their solutions on The New York Times Facebook page are not eligible to be considered in the contest pool; please enter your submissions in the Comments box below.

Push to spur more drugs for deadly rare diseases

2011-04-27T13:15:00.001-05:00

I want my government to spend money helping its citizens. I hope to see more of these partnerships with the public and private sectors. The world will only get better this way.

- m

***************

Push to spur more drugs for deadly rare diseases

(AP) –

1 day ago

WASHINGTON (AP) — Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battling a rare, fatal disease.

And it's their mom who made that possible.

http://www.google.com/hostednews/ap/article/ALeqM5govPI5ja2FjvMPUs-A2FUZE6TAQg?docId=92cdd1688456444a8795b069abde2d77

And You Thought I Was Pitiful Before...

2011-04-26T19:01:00.001-05:00

Day 5 post op. Monday

Blood draw to check electrolytes and cortisol/ACTH after keeping medicine that will save my life!! away from me for 24 hours. That's a cool feeling.

Arrive at Lola's at 8:40 am to find 2.5 year old is sick and wants dada only. Mama can't lift and console. Family sleeps off two hours in family bed. Mom is in pain, trapped, and doses for 15 minutes.

Many dirty diapers later... E heads to Lola's around dinner time with no relief for fever or diaper contents. She's miserable. My poor baby. Mama can't even take care of you. She can't even take care of herself. I take Ambien 10 mg at 9 pm. Helloooooo? Take another half at 1145 pm. Sleep found me by 12:30 am and up by 7:30 am for ...

Day 6 post op.

Pediatrician appt at 9:15 am. Viral infection, possibly gastroenteritis. In and out of that place quickly. TYBJ. Lovely hour in park wandering from bench to bench to sit, watching J and E say hi (chase squirrels). Misting rain made E fly off slide, landed flat on her back 2 feet from the end. Squirrels were adequate and painless distraction. Ran for 45 mins. Dehydrated baby refuses 2 kinds of snow cones ($5), finally drinks 1/2 cup blue Gatorade (free in car).

Mama naps for 30 minutes, wakes to see local endocrinologist at 2 pm who is running 1 hr late. Nice waiting room. Dear Husband (dh) and I finish appointments 2 hours after arrival. Still can't nap. Head pounding.

1st post op mental meltdown with multiple crying episodes -- check!

And it's only post op day 6 with umpteen + infinity left to go. And that's only hyperbole and a half.

But...

Urban Cowboy is recording on the Sundance Channel.

Mama is trying to relax in a jacuzzi bath-- no water up the surgery site! I'll drown.

I'll try again tomorrow. -m

Endocrine-Disrupting Chemicals

2011-04-25T17:09:00.001-05:00

I think this is one reason Cushing's is more common than it used to be. Watch your endocrine disruptors, friends. - m

Pediatricians Call for Increased Regulation of Endocrine-Disrupting Chemicals

http://www.endocrinenewsnow.org/2011/04/pediatricians-call-for-increased.html

Corticosteroids conversion calculator (hydrocortisone, dexamethasone, prednisone, methylprednisolone, betamethasone

2011-04-25T02:08:00.001-05:00

I needed one of these in the hospital. Excellent resource.

http://www.globalrph.com/corticocalc.htm

Worthless hospital pain scale thingee

2011-04-25T00:43:00.001-05:00

I got the pain scale question constantly. I was confused every time! What to say? How to convey--make me feel better!! Too bad I forgot to print this out.

Funny post here on hyperboleandahalf blog.
http://cushingsmoxie.posterous.com/hospital-pain-scale

Post op day 4

2011-04-25T00:34:00.001-05:00

2nd pituitary surgery April 20, 2011

Day 4 post op April 24, 2011

Hydrocortisone (HC is generic, I pay extra for brand Cortef) dose: 20 mg at 8 am, 0 at 2 pm. Skipping afternoon dose to get hormones and electrolytes tested on post op day 5. Hormones get out of whack after pituitary surgery and must be tested. These include igf-1, cortisol 8am, ACTH.

Scheduled my 8 am appointment at Quest Diagnostics lab last week before surgery. Hope to get in and out of there quickly.

Feeling: overall, bad, which is good after pituitary surgery. Nauseous, really tired, muscle fatigue, stuffy head and nose, back pain, leg pain, calf cramps. Not pleasant at all, but I hope I feel stronger every day.
Get through by: Taking phenergen for nausea, vicodin for pain, bananas for muscle cramps and Gatorade, G2, and V8 juice to keep electrolytes balanced. Odd symptoms: ears ringing. Noticed this first when we got home last night. Constant insect chirping noise. Worse with buzzing from ceiling fan or sound machine. Very strange. I want to keep the room quiet and dark. I can stay focused better on movies better than tivo TV with commercials and distractions. I hate extra noise. Boo.

Naps. I woke from sleep at 430 am Sunday morning. Watched tv until 830. Back to sleep by 9:00 am, I think. Slept until 2:30 pm, ate, went back to sleep and up again at 630 pm. I'm tired but hanging in there. Back to bed soon, as it is already 12:30 am Monday!

See da punkin? No too tired to see da punkin today. Uncertainty over how I'd be without my afternoon dose of cortef made us decide to play it conservatively and try to store up energy for tomorrow's lab draw. Even skipped a shower for the cause. I just couldn't chance burning through all my hydrocortisone replacement when I may need it for little things, like blood pressure and electrolyte balance etc. I'll see her tomorrow. I'm sad but she needs me long term. I really do miss her, and I hope I can be an even better mama soon. We'll do our Easter celebration next weekend after some needed recovery time. Thanks to dh j for fetching things, feeding me, and overall loving me and making me get comfortable.
Thanks to my sister and her family for bringing us a yummy Easter meal of ham, sweet potatoes, broccoli casserole, and beans. It was so delicious, Ella. Thanks to all my fam for help: visits to the hospital despite full and crazy parking garages, high pony tails so they don't interfere with all the lying down an relaxing, and taking care of da punkin at home with extra love and attention. She's loving her some dairy queen now. Every ounce adds up. Thanks to everyone for all the kinds words and joke attempts. I love y'all!

Saturday update: oUT!!!

2011-04-23T14:50:00.001-05:00

Out of the hospital. Dropping off rxs now, one for pain (vicodin), another for nausea (zofran).

I picked up my iphone for the first time an hour ago after 4 days. What a change!! I'm usually so busy on this thing.

I have been miserable. Worst pain and hospital experience of my life!! I had the room dark, eyes closed, in pain, minimal talking, no noise, no tv. Just wanted to survive the pain, not from my brain. It was every muscle in my body. Perhaps my growth hormone, also produced in the pituitary, could have been affected during surgery, causing all the socially isolating symptoms.

I'll feel better after a small subway sandwich and good nap in my own bed.

Thank you for following along and rooting for me.

It's, tumorless Melissa, making a report

2011-04-23T13:00:00.001-05:00

I have been discharged, and we are waiting for transport to wheel me down to the car.

I'm okay. Ready to sleep at home. Surgery looks like a success, given my major withdrawal symptoms from the cortisal even on day 1 post op. This road to recover will be very bumpy, and I will feel worse for 6-12 months before I feel any relief. M

Day 3 post-op update

2011-04-23T10:03:00.001-05:00

We are waiting to get discharge clearance from internal medicine for the Diabetes Insipitis and then the neuro should write the discharge orders. Melissa is still tired from not sleeping for the first 48 hours post op. She did get some rest last night. She hasn't read any txt messages, but wanted to thank everyone for the messages and good wishes!

Bedside update

2011-04-20T16:03:00.001-05:00

With Melissa now in recovery, the good news is she feels awful! This is a good sign that maybe the cushing's is gone with that tumor. She is managing now that she recieved her first post op dose of hydrocortisone an hour ago. Poor thing is still in quite a bit of pain and discomfort from all the rattling around done in her head. Will be moving out of recovery soon.

One 4mm tumor successfully removed!

2011-04-20T13:15:00.001-05:00

Melissa is in recovery and the doctor said he was able to remove a 4-5mm tumor from the right side of the glad! No csf leaks or other complication to this point. Also didn't have to cut the gland so hopefully function of glad should be good. Waiting to go back to recovery, hopefully within the hour. Thanks everyone for your support and good thoughts!

Surgery is done... waiting for update

2011-04-20T12:43:00.001-05:00

The doctor just finished the operation. Waiting for him to come out and fill in the details now. I'll post more info as I get it.

Pit tumor part deux - update

2011-04-20T10:35:00.001-05:00

Nurse just updated us... Melissa is stable and doing well. Doctor is still operating and will update us with what he finds when finished.

Procedure underway

2011-04-20T08:42:00.001-05:00

Melissa was wheeled back into surgery about 1 hour ago at 7:45 CST. First update due at around 10 AM CST.

Queue?

2011-04-20T05:11:00.001-05:00

We made it here 10 minutes before report time of 5:15 am. I'm standing in a line with 7 people ahead of me... All of us waiting to check in!! All of these people in this massive hospital complex are here because they have or support someone with a tumor. All of them scared like me but taking the steps to get better. Wow.

Onward!

2011-04-20T04:07:00.002-05:00

Here we go!

I just jumped online to schedule an appointment for my 5 day 8am blood draw, so I thought I would say HELLO!

I am super excited -- and pretty calm -- to be going on to surgery. A Cushie lives to get to that 'next step' -- in this case -- pituitary surgery number 2. The day is here, and I am ready.

Stay tuned and my husband and I will update here when we can.

If you think about me today, I ask you to consider donating $10 to the www.cushings-help.com. I would never have known about Cushing's and how to get help without the founder MaryO and all the kind souls there. Click here to see how important this community is to me.

See you on the other side of Cushing's!!!

~Moxie Melissa

Tumor Willis & any Annoying Sister-- BE GONE

2011-04-19T23:12:00.001-05:00

04-20-2011. Surgery schedule. 2nd pituitary surgery.

MD Anderson Cancer Center with IMCC (neurosurgeon Ian McCutcheon)

********* 3:00 am. i wake up, shower, last minute packing

4:15 am. I leave house to go to hospital 5:15 am. I report to admissions; prepped for surgery. 7:30 am. Surgery begins. Neurosurgeon starts real work. Surgery will take 3.5-4 hours. 11:30a-12:30 p. Neurosurgeon comes out to talk to family, once he knows I am stable and ok in recovery. I will be in recovery for 3-5 hrs until they release me. 4-6 pm. If ok, i'll be released to my private patient room. I am tired but extremely calm. I was at MD anderson today from 8:30 am to 4:45 pm. However, I've been waiting for this second surgery since October 2009. It is time. I don't know how I lasted 18 more months with this blasted disease! I am ready.

Gonna try to squeak out 4 hours of sleep.
Good night, everyone!
See you on the other side of Cushing's.

P.S. Please forgive typos. I'm exhausted.

CUSHING'S AWARENESS: Again

2011-04-17T02:21:00.001-05:00

Well, it's that time again. I am three days away from my second pituitary surgery. Let's hope the neurosurgeon gets all the trouble maker tumor cells this time.

Ever on the quest to ensure the world knows about the dreadful Cushing's disease, I am reposting Pituitary Surgery FAQs. Same surgery. Same doctor. This time, we are going after the tumor on the right side of the pituitary and cleaning the edges of the tumor that was removed on the left side in June 2009.

A Glimpse of Cushings.. by the numbers!

2011-04-09T07:45:00.000-05:00

Thanks to Beth for creating this poll for us!
A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm

I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!

The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.

Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.

Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!

-Beth
~~~

Question 1*Have you been diagnosed with Cushings?
Yes Yes 47   85%
No 2   4%
Currently Testing 6   11%

Question 2*How long have you had symptoms for?
0-1 year 0 0%
1-2 years 1  2%
2-4 years 3    5%
4-6 years 8   15%
6-10 years 9   16%
10+ years 34   62%

Question 3*Were you diagnosed with:
Cushings Disease - pituitary 35   64%
Cushings Syndrome - adrenal 7   13%
Cushings Syndrome - ectopic 0 0%
Cushings Syndrome - cyclical 6   11%
Cushings Syndrome - drug induced 0 0%
Undiagnosed 7   13%

Question 4*How old were you when you first started experiencing symptoms:
15 or younger 15   27%
16-20 years old 7   13%
21-25 years old 9   16%
26-35 years old 12   22%
36-40 years old 7   13%
41-50 years old 4   7%
50+ years old 1   2%

Question 5*How old are you now?
15 years old or younger 0 0%
15-20 years old 2   4%
21-25 years old 3   5%
26-30 years old 5   9%
31-35 years old 10   18%
36-40 years old 11   20%
41-45 years old 6   11%
46-50 years old 4   7%
50+ years old 14   25%

Question 6*How long did it take for you to be diagnosed?
Less than 1 year 7   13%
1-2 years 9   16%
2-3 years 6   11%
3-5 years 8   15%
5-10 years 9   16%
10+ years 8   15%
Undiagnosed 8   15%

Question 7*How many doctors did you see before you were diagnosed?
1 5 9%
2 2   4%
3 4   7%
4 7   13%
5+ 30   55%
Undiagnosed 7   13%

Question 8*Which of the following did you get?
High blood pressure 22   40%
Diabetes 2   4%
Both 19   35%
Neither 12 22%

Question 9*What symptoms have you experienced/are experiencing?
Weight Gain 55   6%
High Blood Pressure 42   4%
High Blood Sugar 28   3%
Extra Hair Growth 46   5%
Hair Loss 42   4%
Bone Loss/Broken Bones 28   3%
Muscle Loss/Weakness 55   6%
Fatigue 53   6%
Loss of Menses 33   4%
Stretch Marks 46   5%
Flushed Red Skin 42   4%
Buffalo Hump 47   5%
Swelling 48   5%
Hot Flashes/Sweating 49   5%
Sleep Disturbances 53   6%
Vision Problems 37   4%
Acne 34   4%
Bruising 42   4%
Body Odor 30   3%
Anxiety 46   5%
Depression 44   5%
Infertility 13   1%
Other 21

Question 10*What do you think has been the WORST symptom you've had to deal with?
Weight Gain 26   47%
High Blood Pressure 0 0%
High Blood Sugar 1   2%
Extra Hair Growth 0 0%
Hair Loss 0 0%
Bone Loss/Broken Bones 1 2%
Muscle Loss/Weakness 6   11%
Fatigue 10   18%
Loss of Menses 0 0%
Stretch Marks 0 0%
Flushed Red Skin 0 0%
Buffalo Hump 0 0%
Swelling 0 0%
Hot Flashes/Sweating 0 0%
Sleep Disturbances 2   4%
Vision Problems 0 0%
Acne 0 0%
Bruising 0 0%
Body Odor 0 0%
Anxiety 1   2%
Depression 3   5%
Infertility 0 0%
Other 5   9%

Question 11*How much weight did you gain?
0-50 lbs/0-22 kg 7   13%
51-100 lbs/23-45 kg 20   36%
101-150 lbs/46-68 kg 17   31%
151-200 lbs/69-90 kg 8   15%
200+ lbs/91+ kg 3   5%

Question 12*When do you get your best sleep?
Between 10pm - 6am 17   31%
Between 6am - 2pm 23   42%
Between 2pm - 10pm 7   13%
None of the above I'm awake all the time! 8   15%

Question 13*Have you had any complications in other systems of your body that may or may not be Cushings related?
Oral 13   7%
Gastrointestinal 33   19%
Heart 19   11%
Thyroid 28   16%
Circulatory 14   8%
Nervous System 11   6%
Mental Health 28   16%
Learning 16   9%
Other 9   5%
None of the Above 3   2%

Question 14*What testing did you have leading to a diagnosis of Cushings?
AM/PM cortisol blood draw 40 13%
24hr UFC 50   16%
10hr UFC 16   5%
11pm/midnight saliva 33   10%
High/Low Dex test 42   13%
IPSS 13   4%
ACTH Stim test 17   5%
CRH Stim test 10   3%
Head MRI/CT 49   16%
Adrenal MRI/CT 26   8%
Chest X-ray 12   4%
Other 8   3%

Question 15*Which was the worst test you had to have?
AM/PM cortisol blood draw 3   5%
24hr UFC 8   15%
10hr UFC 0 0%
11pm/midnight saliva 1   2%
High/Low Dex test 6   11%
IPSS 8   15%
ACTH Stim test 0 0%
CRH Stim test 2   4%
Head MRI/CT 12   22%
Adrenal MRI/CT 4   7%
Chest X-ray 0 0%
Other 11   20%

Question 16*Are you currently:
Working 19   35%
Going to school 3   5%
Working AND going to school 2   4%
Was working and had to quit 23   42%
Was going to school and had to quit 0 0%
Working and going to school and had to quit 2   4%
Retired 2   4% Never worked 4   7%

Question 17*What treatments have you had?
Unilateral adrenalectomy 4   4%
Bilateral adrenalectomy 13   13%
Transsphenoidal tumor removal 35   35%
Gamma Knife Surgery or similar 4   4%
Daily radiation for a period of time 1   1%
Ketoconazole 21   21%
Metyrapone 2   2%
Mitotane 0 0%
Cabergoline 1   1%
Cessation of steroid use 1   1%
Homeopathic 7   7%
Other 2   2%
Have not been treated yet 10 10%

Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local 11   20%
Some treatment local traveled for other 18   33%
Had to travel for all treatment 18   33%
Have not been treated yet 8   15%

Question 19*Has your treatment been successful?
Yes I am in remission 18   33%
No I am still sick 10   18%
No I am still sick and I am testing again 4   7%
No I have had a recurrence treated again in remission 3   5%
No I have had a recurrence treated again still sick 9   16%

Have not been treated yet 11   20%

Cushie Warriors

2011-04-08T18:36:00.003-05:00

CUSHIE WARRIORS: MEN, WOMEN & CHILDREN WHO BATTLE CUSHING’S NUMEROUS TIMES IN HOPES OF WINNING THE WAR

Many of you only know one person with Cushing’s. It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment. You have probably never known someone with Cushing’s before, right? You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends.

You see, for us, we know MANY people with Cushing’s through Cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated. When it happens to us, we are often rendered speechless. When we see our fellow Cushies meet the same poor medical treatment, we become incensed. Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.

For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.

Every patient wants to be understood, supported, and cared for. We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.

Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’

(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

Melissa, Texas.
Pituitary surgery #1: June 2009.
Pituitary surgery # 2: soon in April 2011.
Sarah, Oregon.
Pituitary surgery #1: Nov 2009.
Pituitary surgery #2: March 2010.
Pituitary Surgery #3: Sept 2010.
BLA: April 2011.
Alex B, California
Pituitary surgery March 2008
BLA July 2009.
Krystine T, Washington
1st failed Pituitary surgery March 1996
2nd failed Pituitary surgery Dec 2002
BLA Dec 2004
3rd failed Pituitary surgery Sept 2009
MEGA ONE DAY Radiation ZAP Aug 2010
Jill, Denver, Colorado
left adrenalectomy Nov 2006
right adrenalectomy Feb 2008
Karen, Hinesburg,Vermont
1st Pituitary surgery in Portland OR, January 9,2006. Not successful.
2nd Pituitary surgery in Seattle Washington July 9, 2007.
CSF leak July 13, 2007. I'm in remission.
Christy, Oklahoma.
Pituitary surgery 9-2004 Oklahoma City
BLA 11-2004 Oklahoma City
Rest Tissue PIT 9-2006 Pittsburgh
CSF leak repair with titanium after the last pituitary surgery and it was removed 5-2009.
Beth, Winnipeg, Manitoba, Canada.
Gamma knife December 2006 and again December 2008. Still broken, and if the tumor grows more (it's been stable for a bit now), I'll likely be headed for a 3rd time!
Justin K., Kansas
Pituitary surgery, May 19, 2008.
BLA, May 6, 2009.
Jessica K., Kansas.
Pituitary surgery, May 16, 2008.
BLA, May 6, 2009.
Bill K., Kansas.
Pituitary surgery, August 14, 2009.
BLA, June 2, 2010.
Danielle, Massachusetts.
Pituitary Surgery #1 Dec 16, 2009.
Pituitary Surgery #2 February 11, 2010.
BLA Sep 2, 2010
Trisha T, Tampa FL
Pituitary surgery 4/07
Currently trying to avoid BLA with various meds.
Cindy W, Kentucky.
Pituitary Surgery 11-5-07
BLA 03-07-08
CSF Leak repair 10-28-08
Lisa, Illinois.
Pituitary Surgery 5-30-08
BLA 11-4-09
Still not cured.
Susan G.
Pituitary Surgery 7/07
Cleared for 2nd pituitary surgery 10/10.
Kimberly, Illinois.
Pituitary Surgery 11-2-2009
BLA 2-2-2011.
Debra, Virginia
Debra v. Gallbladder due to Cushings, 1/2005
root canal due to broken tooth 8/2008
Pituitary surgery 10/2008
BLA 6/2010
Sinus/leak repair 1/2011
Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
Lisa O, Washington State
3/25/2009-pituitary surgery
5/13/2010-BLA
April, KY.
Unsuccessful pituitary surgery 1/15/10.
Testing again.
Elizabeth J, KY
Pituitary Surgery 7-2-2009
BLA Sept. 15, 2010
Trisha S, Indiana
Pituitary surgery 11/13/2008.
Not cured - retesting.
Lynne R, Oxford, England.
Pituitary surgery April 2008
CSF leak repairs: April 2008, May 2008, May 2008 (3 leaks in the space of 5 weeks), with meningitis as a result of the leaks.
Issues due to pituitary gland removal: crohns disease, pernicious anaemia, life dependent on multiple medications [hydrocortisone, ddavp, thyroxine, hrt, growth hormone, colestyramine, Vit B12 injections etc, etc. ( oh, and it stole my life- and I'd quite like it back please)]
Dara M, Limerick, Ireland.
Pituitary surgery 29th June 2009
got MRSA in sinus as a result, had surgery to remove scar tissue.
MRSA is not for Christmas, for me it's for life xxx
Philip B, New Jersey.
Pituitary surgery at MD Anderson October 31, 2007.
Testing for Recurrence since Jan. 2011.
Replacing Growth hormone and Testosterone
Donna, Winnipeg, Manitoba, Canada
Pituitary surgery Aug2009.
new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
had gamma knife nov. 2010.
still waiting to be better. tumor has not shrunk yet
Michelle, California.
Pituitary surgery February 2009.
BLA February 2010.
Not cured. Testing. 2 tumors showed on MRI.
Shauna N, Washougal, WA.
Pituitary surgery 8/2/01
BLA 2/5/02.
Robin S, Salem, VA
Pituitary surgery Dec. 14, 2006
BLA June 16, 2010
Lori, Great Neck, NY
Diagnosed 12/1994.
Pituitary surgery 3/1995
Pituitary surgery 5/1997
Pituitary surgery 7/1999
Still sick. Possible Cyclical?
Nan, New Jersey
Pituitary Surgery, October 2010
Dan, Delaware.
Pituitary Surgery #1 August 2009.
Pituitary Surgery #2 February 2011.
Cyndie M, New Jersey
Pituitary 1-09-2009
Upcoming BLA 4-28-2011.
Kim S., Pennsylvania
Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
Testing since Oct 2010 for Cushings.
Kay, New Jersey
1st & 2nd Pituitary surgery June 2008 - in remission
Jenny, Iowa.
Pituitary Surgery #1- May 2008.
Pituitary Surgery #2- April 2009.
Currently considering a BLA vs. pituitary surgery #3.
Tanya, Buffalo, NY
Pituitary surgery #1 - February 2010
currently seeking re-diagnosis
Denise P, Dallas,Oregon
2003 Pituitary surgery Vanderbilt
2004 canceled pituitary removal after screws were in (I was in pre-op) Vandy
2004 Stereotactic Radiosurgery- Vanderbilt
2005 Right half of Pit removed - OHSU
2005 BLA - OHSU
Cate, Georgia
Pituitary surgery #1 and 2 -- August 2009.
In remission.
Kate, New Jersey
Pituitary surgery #1 - Jan. 2007 (Failed)
Pituitary surgery #2 - July 2007 (Total Pit Removal; Failed)
CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)
Open BLA with 18" incision - Sept. 11, 2008
Gamma Knife Radiosurgery - Oct. 2009
No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
Pat, California
Pituitary Surgery #1: August 2000.
Pituitary Surgery #2 December 2007.
Currently testing for surgery #3.
Christy, New Mexico
Pituitary surgery November 2010.
Considering BLA
Brenda, Alberta, Canada
Pituitary surgery May, 2007
BLA May, 2007
Jamie, Washington State
Pituitary surgery #1: March 2010.
Pituitary surgery #2: April 2010.
Melissa, Florida
Pituitary surgery #1: March 2009.
Pituitary surgery #2: December 2009.
BLA to come?
Vicki, Buffalo, NY
Pituitary surgery #1: October 2009.
Pituitary surgery # 2: April 2010.
BLA soon to come.
Gina, Georgia
Pituitary surgery #1: March 2009.
Bilateral Adrenalectomy: October 2009.
Sherry C, Silverton OR
1st pituitary surgery 3/2006
2nd pit surgery 9/2006
BLA 10/2006.
Sick since 1999 but diagnosed in 2005.
Tested for 1 year. Knew I had Cushing's since 2004.
Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.
Melyssa, Colorado
Pituitary Surgery # 1: August 2009.
Currently testing again.
Michaela, Toronto, Ontario, Canada.
Pituitary surgery 1 -- June 2005
Pituitary surgery 2 -- Jan 2008
Pituitary surgery 3 -- July 2008
BLA -- July 2009
Gisella, California
Pituitary surgery #1: October 2009.
Pituitary surgery #2: August 2010.
Pituitary surgery # 3 or BLA to come.

From Cushings-Help.com Glossary:

Pituitary Adenomas

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.
For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.

BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.

Gamma Knife: This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.

Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Fundraising Efforts

2011-04-03T15:48:00.002-05:00

I created this ticker to show us how close we are getting to the goal of raising funds to support Cushings-Help.com.

This is my first time to raise money this way, so my methods are rudimentary. If you decide to donate, please let me know, either by commenting below or some other way. I will then update the ticker with the new donation so that we get an accurate reflection of our fundraising efforts.
Please consider donating $10 to keep the Cushings-Help.com's message boards up and operating free for all those who need it.
I thank all of you for your support.
~ Melissa

Fundraising for Cushing's Awareness Month

2011-04-03T14:38:00.001-05:00

APRIL IS CUSHING’S AWARENESS MONTH

Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office. The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right? WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life. That afternoon, I took to the computer to research my symptoms on the internet. When I found the Cushings-Help.com message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die? It is not easy. Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the Cushings-Help.com message boards in the past four years. We were lost without each other. We each came to the message boards new and scared. We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us. We learned from each other. Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy. We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes. We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views.

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire. Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare. I just can't even imagine where I would be without the Cushings-Help.com site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month. Goodness sakes, you know we need the extra time! It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month.

As such, I decided to raise funds to support the website that saved my life. For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family.

Operating and maintaining the Cushings-Help.com site takes money. It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure. I ask you to join me and donate to the support this important website.

I hope to raise $500 in April 2011. Can I count on you to donate $10?

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed. Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find.

I have many interesting posts planned for Cushing’s Awareness Month this April. As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by. On April 20^th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain.

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.”

Putting words in your mouth? I hope so.

Laying it on thick for an important cause,
Your truly,

Melissa

UPCOMING PITUITARY SURGERY SCHEDULED

2011-04-03T11:03:00.001-05:00

Hello to all of you still following along. I wanted to tell all y'all some big news.

I have been diagnosed with cushing's disease again, and I'm off to surgery! I'll have my second pituitary surgery in Houston on April 20, 2011.

I have many details to provide still, and I hope to find time to post back story soon. I will say that we used our tax refund to purchase a new iPad 2, which will making sending updates from the hospital and post-op easier, I hope.

With surgery and the chance to return to the rest of my long life only 17 days away, I think of that 80s song: The future so bright, I gotta wear shades.

THIS IS THE BEST ADVICE BASED ON MY EXPERIENCE.

I encourage you to do midnight testing every night in a row until you get your highs. Do not skip.

Get blood draws at midnight and again 30 minutes later. Chew a salivary cortisol test swab while getting your blood drawn. I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high v. low, and frankly, it is quite unfair that we should have to know. This disease is an enigma - a mystery wrapped in a riddle. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure.

Take control. Your mission is to show up every night, and hang in there.

~Moxie Melissa

Low Expectations, Contracts, and All Types of Feasances

2011-03-07T13:25:00.001-06:00

When a patient visits a doctor, s/he does so with a certain expectation. The patient recognizes the schooling and degrees the doctor holds. We pay him/her for his time, expertise, knowledge, and guidance. The patient is not allowed to be late to the appointment, as many offices reschedule the appointment for fear it will delay the already crowded schedule. If the doctor keeps the patient waiting, so be it. The patient shuffles from room to room waiting for his/her turn. Rarely do we complain about the time, and rarely do we leave the office in less than an hour, after a 10 minute visit with the doctor, of course. Regardless, it is a system that we all buy into. We accept. We may complain, but we need these people, these doctors. People in many societies have come to accept this modern medical practice.

In addition, the doctor goes to great lengths to ensure the patient understands our responsibility, our financial obligation to the doctor for his time and expertise. The patient signs many forms before the initial appointment -- outlining the beginning of this relationship. The doctor will be paid for his service, whether through the insurance company or the patient. The patient is paying for the service of a medical doctor. We pay them based on time, not results. In no way does the doctor ever promise to the patient that s/he will resolve our medical ailments. Isn't that a little messed up?

What happens when we patients can no longer get a doctor to listen to us? What happens when we are very clear about our symptoms, request certain testing to rule out our undiagnosed illness, yet the doctor refuses to help us? It is my strong view that when a doctor who fails to investigate a patient's concerns about Cushing's -- yet we continue to pay them for their time but inattention -- it is a breach of contract.

"When a contract creates a duty that does not exist at common law, there are three things the parties can do wrong:

Nonfeasance is to ignore and take no indicated action - neglect.
Misfeasance is to take inappropriate action or give intentionally incorrect advice.
Malfeasance is hostile, aggressive action taken to injure the client's interests."

I have heard story after story from my Cushie friends, horror stories of the treatment they receive from doctors who dismiss their concerns, symptoms, and knowledge. It makes me so sad and ANGRY.

Nonetheless, we Cushies have come to expect this terrible treatment from doctors. When were a far enough along, we can even joke about it.

To emphasized this point, my brilliant and super cool Cushie friend Cyndie created this video, which portrays a typical exchange between Cushing's patient and endocrinologist/doctor. LOSE WEIGHT. EXERCISE. Oh yeah, well, that won't get rid of my tumors, you jackhole!

Now, repeat this exchange at every doctor appointment for 4 to 20 years, and then it doesn't seem too funny.

Totally and Utterly Preposterous

2011-03-07T13:02:00.001-06:00

One of the main reasons I spend my time to write the blog is to generate awareness about Cushing's. Patients like me will continue to suffer needless until everyone understand how this disease impacts us so that they can take good care of us. We deserve that.

This story is preposterous! It's an outrage. What can we Cushing's patients do when even the *medical staff* do not know how to take care of us?!

Birmingham hospital accused of kicking out hallucinating brain tumour teenager in pyjamas

A TEENAGER with a brain tumour was kicked out of hospital by security guards and left wandering the streets hallucinating in his pyjamas, relatives have claimed.

An investigation into how 19-year-old Anthony Riding, a patient under the care of Heartlands Hospital, came to be found on the street in freezing cold weather is now under way.

The desperately ill teen had not been officially discharged from the hospital and he claimed two NHS security guards had escorted him off the premises to nearby Belcher’s Lane and ripped off his patient ID wristband.

Anthony, from Bordesley Green, suffers with rare hormonal disorder Cushing’s Syndrome, caused by a tumour in the pituitary gland next to the brain.

Side effects mean that he can suffer psychological disturbances from euphoria to depression.

He was admitted as an emergency to the hospital, in Bordesley Green, suffering syndrome-related problems along with mood swings and hallucinations on the night of December 15.

But the following morning at 10am, his family found him wandering the streets in his pyjamas and flipflops as temperatures plunged into minus figures.

Dad Tony said: “After complaining to the hospital, nurses said there had been some problems during the night with Anthony when he had been swearing and needed restraining.

“That is all part of his condition but if they had a problem, someone should have rung us to bring him home or sit with him, not chuck him out on to the street in his pyjamas when he was under their care.

“We found him in his pyjama shorts and flip flops, hallucinating. He had been wandering around like that for nearly two hours and had bruises on his arms from where he had been grabbed. It was so cold, it snowed later that day.

“Anthony’s specialist nurse at Queen Elizabeth Hospital was very disappointed in what happened and told me that what other people see as bad behaviour is part of Anthony’s condition, and other medical staff should know that.”

The syndrome is so rare that only one in five million children have similar symptoms to Anthony’s and one in every two million adults.

Anthony has already undergone two unsuccessful operations on the tumour and is now waiting to see whether a month’s-worth of radiotherapy has helped.

A month after his first operation, Anthony met his footballing hero when Paul Gascoigne was visiting the NEC and he gave the teenager words of encouragement.

A Heartlands Hospital spokeswoman said: “We take the safety of all of our patients and staff very seriously and are very sorry to learn of the concerns raised by Mr Riding and his family. We will be carrying out a full investigation into the issues they have raised.

“We always aim to support our patients and staff and if an individual is consistently using violent and abusive behaviour, we have a responsibility to ensure our staff and patients are protected at all times.”

**********************

pre·pos·ter·ous

–adjective

completely contrary to nature, reason, or common sense; absurd; senseless; utterly foolish: a preposterous tale.

Power Users: Enough Said

2011-03-02T15:29:00.001-06:00

Thank you to my sweet friend Rev Kev for passing along this article, and saying, "Ok so Melissa was not mentioned by name, but the profile fits."

People Coping With Rare Disease Are Internet Power Users

iStockphoto.com

Published: March 01, 2011

by Nancy Shute

When people go online searching for health information, they're often also looking for someone who's grappling with the same problem. That's especially true if they're dealing with a rare disease.

The Internet provides a gateway to all kinds of medical facts and also to people who have come by that information the hard way.

That's the news from a survey just out from the Pew Internet Project and the California Healthcare Foundation. They found that people dealing with rare diseases are the undisputed power users of health information online.

About 25 million people in the United States have a rare disease, although each disease affects no more than 20,000 people. Because of that, people often have a hard time finding others in the community with first-hand knowledge of that disease.

People are also more likely to seek their peers out online if they are coping with a medical crisis, are a caregiver for a sick relative, or are dealing with a chronic condition. About one-quarter of Internet users in those situation seek out peers online, compared to 18 percent of Web surfers overall.

But the people dealing with a rare disease were far more likely to have honed their searching, learning, and networking skills to Olympian levels. The majority of them are connected to peers online. "We can say things to each other we can't say to others," one woman living with a blood disorder wrote in the survey. "We joke about doctors and death. We cry when we need to. Together we are better informed."

That's not to say that people are dissing doctors. Almost three-quarters of adults say they turn to doctors and other health professionals for information. Some 54 percent say they ask friends and family for advice.

But clearly the Web has something to offer people in need of medical information beyond mere data. "People want emotional support from their peers," says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences," she tells Shots. [Copyright 2011 National Public Radio]

http://m.npr.org/story/134140813?url=/blogs/health/2011/02/28/134140813/people-coping-with-rare-disease-are-internet-power-users&sc=emaf

Harvey Cushing: Rocking Modern Medicine

2011-02-26T08:20:00.001-06:00

Famed neurosurgeon's century-old notes reveal 'modern' style admission of medical error

Science Centric
22 February 2011 23:32 GMT

The current focus on medical errors isn't quite as new as it seems. A Johns Hopkins review of groundbreaking neurosurgeon Harvey Cushing's notes, made at the turn of the last century, has turned up copious documentation of his own surgical mishaps as well as his suggestions for preventing those mistakes in the future.

Authors of the article, published in the Feb. Archives of Surgery, suggest that such open documentation may have played an important role in spurring groundbreaking medical treatment advances in Cushing's era - and could have the same effect today.

'Acknowledging medical errors is evidently something that doctors identified early on as critical to advancement a very long time ago,' says principal author Katherine Latimer, B.S., a medical student at the Johns Hopkins University School of Medicine.

Latimer and her colleagues scoured Johns Hopkins' archives to locate operative notes covering 878 of Cushing's patients. The notes, transferred decades ago to microfilm, covered the early years of Cushing's career, from 1896 to 1912, at The Johns Hopkins Hospital. After deciphering the notes - a monumental task, the authors say, owing to Cushing's poor handwriting, abbreviations, and pages crowded with notes of other physicians, too - the researchers selected 30 cases in which errors were clearly delineated.

The cases fell into categories of errors similar to those that plague doctors today, the authors said, classifying 11 of the cases as errors of judgement in which Cushing made the wrong choice during a surgery. One example: operating on the wrong side of a patient's brain. Seventeen cases were identified as 'human error,' mistakes in which Cushing revealed clumsy or careless behaviour, such as dropping an instrument into a surgical wound. Three of the errors were considered equipment or tool oversights, such as the case in which a woman's heavy bleeding left Cushing and his colleagues without enough wax, a substance used at the time to seal blood vessels.

Latimer and her colleagues say they were surprised by Cushing's frank and copious documentation of his own shortcomings. His notes acknowledged mistakes that may have resulted in patients' deaths, as well as those that didn't seem to harm patients' outcomes. They said the documentation took place in an era in which malpractice litigation was becoming a growing concern for doctors. Though malpractice penalties were substantially smaller in Cushing's day, lawsuits presented a serious risk for physicians' reputations, the authors noted.

The authors also emphasised that Cushing practised in a time of enormous surgical innovation. For example, patient mortality from surgical treatment of brain tumours fell from 50 percent to 13 percent during his career. While some of this jump ahead was due to improving technology, the authors propose that part of the reason was open documentation of errors, which helped Cushing and other surgeons develop fixes to avoid them.

'People are human and will make medical mistakes,' says Latimer, 'but being vigilant about your own shortcomings is critical to improving. To keep medical innovation flowing, we need to strive to maintain this same vigilance today.'

Alfredo Quinones, M.D., associate professor of neurosurgery at the Johns Hopkins University School of Medicine and senior author of the study, adds that today's medical errors continue to have a tremendous impact on patients and their families. 'Recognising errors and reporting them can help us greatly improve medicine,' he says. 'After all, we are all working towards the same goal: better patient care.'

Story from Science Centric | News
http://www.sciencecentric.com/news/11022234-famed-neurosurgeon-century-old-notes-reveal-modern-style-admission-medical-error.html

Pay No Attention to the Girl Behind the Smile

2011-02-25T05:47:00.001-06:00

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

-- an oldie but a goodie I food when reading my blog

Sleep

2011-02-24T22:27:00.001-06:00

See and download the full gallery on posterous

Cushing's: Disease of the Night

2011-02-24T22:25:00.001-06:00

Cushing's is a disease of the night. Fluctuating cortisol levels keep our bodies captive in a sleepless cave: one night, we may find sleep; other nights, it eludes us.

After drudging through a day of dental work and laundry yesterday, I was happy to climb in bed early. I slept soundly from 9 pm to 12:40 am.

-- ZING -- My eyes popped open.

I was wide awake until 5 am but i was to restless to sleep. My toddler daughter woke up extra early at 6 am, and I think I dozed off with her in the bed with me around 7:30 am. She played on my iPhone. She woke me up at 7:50 am, pulling the lamp string on and off, saying "Mama get up. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp." So, because her life depended on it, I got up. We were up until we napped from 3-5 pm. I was awake from 12:40 am to 3:00 pm. Now, it is 10:00 am, I hope I can sleep through the night. If you see Mr. Sandman hanging around Go, please send him my way.

Despite my two batches of high test results and the tumor sighting, my body insists on pumping out more cortisol. I don't need all the extra anymore! Oh, I just realized. I didn't cc: my body on the email below, giving it a reprieve from all that cortisol pumping. I forgot to announce that it doesn't have to perform on command anymore (not that it really ever did but it succeed in doing the opposite aka Costanza's move). I failed to mention that there is no need to show off its full-figured, more-to-love cortisol stock pile anymore. So listen up, T-T-T-Tumor Willison Phillips. I am almost to surgery. Let's all try to get along and get some rest. No more midnight parties, please. I know you know the end is near, that your days are numbered. I hope you do go down without a fight, because whether you like it or not, I'm gonna have to cut you out of my life. Capice?

-m

Hospital Pain Scale

2011-02-24T04:52:00.001-06:00

This is the best thing I have read in a looonnnnggg time. I plan to tape it to my rolling table bridge over my lap thing while I'm in the hospital for my 2nd pituitary brain surgery. Hooray for better communication. ~m

Boyfriend Doesn't Have Ebola. Probably.

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-pro...

See and download the full gallery on posterous

Plop Plop Fizz Fizz: Oh What a Relief It Is

2011-02-23T19:07:00.001-06:00

I have some very good, very personal news to share!! I wrote an email to my LA endocrinologist, cc:ing the neurosurgeon. It's easier to paste than summarize again. Here we go!

***********

I met with Dr. [Neurosurgeon] yesterday, February 22, 2011. We reviewed my dynamic 3T MRI of the pituitary dated 1/12/11, and Dr. [Neurosurgeon] immediately identified two areas of suspicion in the sequence when the dye entered the pituitary. The target area is a 3 millimeter tumor located on the right side of the pituitary. He also identified a suspicious area adjacent to where the left tumor was resected during the last pituitary surgery. The white arrow points to a tumor, aka dark area aka "area of hypoenhancement" in radiology terms.

[note: the radiologist read this 19-month post op MRI as a normal post operative scan. Radiologists are often wrong. I repeat, Radiologists are often wrong! You must have your pituitary MRIs read by a neurosurgeon. Do not stop pushing for a Cushing's until you get it].

Dr. [Neurosurgeon] is awaiting a final letter from you regarding your findings and recommendations. He is willing to accept me as his surgical patient for a second pituitary surgery.

Since your last email, I have a second positive value: a high on a salivary cortisol test supporting hypercortisolemia. It occurred the same night as my high midnight serum cortisol draws on 2/11/11. MN cortisol serums (normal
2011-02-12 @ 0037 – 1.9 (ug/dL)
2011-02-12 @ 0007 – 3.1 2011-02-11 @ 0035 – 9.7 // diagnostic for Cushing's 2011-02-11 @ 0010 – 8.4 // diagnostic for Cushing's

2011-02-10 @ 0045 – 8.7 // diagnostic for Cushing's 2011-02-10 @ 0015 –11.1 // diagnostic for Cushing's

2011-02-09 @ 0040 - 9.2 // diagnostic for Cushing's
2011-02-09 @ 0010 - 9.8 // diagnostic for Cushing's

2011-02-08 @ 0023 - 5.6 // suggestive of Cushing's

2011-02-07 @ 0030 - 5.1 // suggestive of Cushing's
2011-02-07 @ 0000 - 5.0 // suggestive of Cushing's

2011-02-06 @ 0034 – 3.3
2011-02-06 @ 0013 – 2.6
MN salivary cortisol (normal
2011-02-12 @ 0034 – 0.051

2011-02-12 @ 0009 – 0.071 2011-02-11 @ 0033 –0.180 // diagnostic for Cushing's (CORTISOL DOUBLED IN 29 MINUTES)

2011-02-11 @ 0004 – 0.087 2011-02-09 @ 0045 – 0.085 Based on these findings, are you ready to clear me for a second pituitary surgery? Dr (neurosurgeon) reviewed the benefits and risks of a second pituitary surgery. He mentioned the short-term possibility of diabetes insipidus and cited the chance for a cerebrospinal fluid leak to be 15-20%, which would require a few more days in the hospital lying flat on my back. We discussed fertility, and Dr. McCutcheon stated that having a second pituitary surgeon would like hurt the chances of maintaining fertility going forward. My husband and I discussed fertility after the appointment. We both agreed that the next step is a second pituitary surgery. We both struggle with my compromised quality of life, and we know that, above all else, is our top priority. We are not willing to consider a bilateral adrenalectomy (BLA) now, since there is a clear target for pituitary surgery, and a life on replacement steroids is scary for us. A miracle baby will follow if it is meant to be. We are still excited for what the future holds for us.

I look forward to your recommendations, and I hope surgery will be in my near future.

Sincerely,

Melissa

On Thu, Feb 17, 2011 at 12:37 AM, my Los Angeles endocrinologist:

These look high-let's see the stuff you sent to the Esoterix lab and [the neurosurgeon's] read on your mri. I like to see a 2nd positive value [indicating high cortisol].
Glad you are happy.

***********

Can you see me smiling from ear to ear! I am so happy!!!
~ m

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article | Pituitary Network Association

2011-02-22T09:50:00.001-06:00

Many people watching the physical demise of a Cushing's patient may believe that the struggle to diagnosis makes us depressed. While that is true and worthy of every drop of depression, in actuality, that is only part of the story. Tumors cause the pituitary to send out error messages that cause many hormones to sputter and malfunction. This resulting hormone imbalance leads to depression, anxiety, mood swings, and suicidal thoughts.

NOT TOO FUN. ~m

* * * * * * * * * *

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article

Pituitary Network Association, www.pituitary.org

This presentation covered the following:

The basics of the hormone system
How stress affects the pituitary gland
The purpose of emotions and how they interact with the body
Some of the mental health symptoms commonly associated with pituitary and other hormonal disorders
What you can do to help yourself or a loved one with the mental and physical symptoms of and endocrine disorder

http://www.pituitary.org/library/library_detail.aspx?page_id=2410

Cortisol Levels, Thyroid Function and Aging

2011-02-22T05:36:00.001-06:00

Thank you to my dear Cushie friend Cyndie for this excellent find.

* * * * * * * * * * *

HOW CORTISOL LEVELS AFFECT THYROID FUNCTION AND AGING

Interview with David Zava, Ph.D

JLML: Cortisol is needed for nearly all dynamic processes in the body, from blood pressure regulation and kidney function, to glucose levels and fat building, muscle building, protein synthesis and immune function. You’ve been specifically studying the effects of cortisol on thyroid function.

DTZ: Yes, one of cortisol’s more important functions is to act in concert or synergy with thyroid hormone at the receptor-gene level. Cortisol makes thyroid work more efficiently. A physiologic amount of cortisol—not too high and not too low—is very important for normal thyroid function, which is why a lot of people who have an imbalance in adrenal cortisol levels usually have thyroid-like symptoms but normal thyroid hormone levels.

JLML: Would you explain this thyroid-cortisol relationship in more detail?

DTZ: One way to understand the synergy of cortisol and thyroid is to think of trying to turn on a big round valve with one hand, as opposed to two hands where you can really grip it and turn it on. Both thyroid and cortisol have to be there in the cells, bound to their respective receptors at normal levels, to efficiently turn the valve on and get gene expression. So, when cortisol levels are low, caused by adrenal exhaustion, thyroid is less efficient at doing its job of increasing energy and metabolic activity.

Every cell in the body has receptors for both cortisol and thyroid and nearly every cellular process requires optimal functioning of thyroid.

JLML: And what happens when cortisol levels get too high?

DTZ: Too much cortisol, again caused by the adrenal glands’ response to excessive stressors, causes the tissues to no longer respond to the thyroid hormone signal. It creates a condition of thyroid resistance, meaning that thyroid hormone levels can be normal, but tissues fail to respond as efficiently to the thyroid signal. This resistance to the thyroid hormone signal caused by high cortisol is not just restricted to thyroid hormone but applies to all other hormones such as insulin, progesterone, estrogens, testosterone, and even cortisol itself. When cortisol gets too high, you start getting resistance from the hormone receptors, and it requires more hormones to create the same effect. That’s why chronic stress, which elevates cortisol levels, makes you feel so rotten—none of the hormones are allowed to work at optimal levels.

Insulin resistance is a classic example. It takes more insulin to drive glucose into the cells when cortisol is high. High cortisol and high insulin, resulting in insulin resistance, are going to cause you to gain weight around the waist because your body will store fat there rather than burn it.

JLML: This would certainly be a significant effect when it comes to creating balanced hormone levels.

DTZ: When cortisol is high the brain also is less sensitive to estrogens. That’s why you can have a postmenopausal woman with reasonable amounts of estrogen, but when you put her under a stressor and her cortisol rises, she’ll get hot flashes, which are a symptom of estrogen deficiency. She really doesn’t have an estrogen deficiency, the brain sensors have just been altered. If you then drive the estrogen levels up with supplementation to treat the hot flashes, she’ll start getting symptoms of estrogen dominance like weight gain in the hips, water retention, and moodiness. And the hot flashes usually don’t go away.

This is why you often can’t effectively treat someone with hormonal imbalance symptoms such as hot flashes by simply adding what seems to be the missing hormone, be it thyroid, progesterone, estrogen or testosterone. If your cortisol is chronically high you’ll have overall resistance to your hormones.

Click here for full article; http://www.virginiahopkinstestkits.com/cortisolzava.html

DENTAL WORK: Thanks a lot, Cushing's!

2011-02-20T14:11:00.001-06:00

I am having a lot of dental problems. Just went to the dentist this past Monday. She was showing me cracked teeth, chipped teeth, broken crowns, broken fillings -- plain as day in the photographs on the screen in front of me. Undeniable. I was shocked and mortified!

After going tooth by tooth, detailing what she recommends for treatment, the dentist asked, "Do you grind your teeth?" I said, "I did when I was younger, but I don't know now." She said that bruxism or teeth grinding appears to be the cause of the damage to my teeth. I asked her what causes that, and she said, stress.

HELLO!

I saw a dentist just last year, when I thought I chipped a tooth on a piece of hard candy. I didn't have the chipped tooth after all, but he didn't mention any of this other damage. We even discussed Cushing's because his teenage cousin had just gotten some high cortisol tests. So, I don't know if all this damage has happened in the last 12 months while my cortisol has been getting higher or not.

So, I am in for $2500 of dental work plus a mouth guard, which can't be fitted until I get all the other repair work done. My dental insurances covers $1500, so I plan to pursue additional money from the medical insurance, since of courses, this problem is the results of a medical condition -- 255.0. Has anyone ever tried that? Regardless, I'm gonna try to get the medical insurance to reimburse me some of the money. Just another fight on my hands, I am sure.

Boo, Cushing's. Boo to you.

2009 article on Cyclical Cushing's

2011-02-19T12:39:00.001-06:00

A member of the message boards shares this article yesterday. Thank you!

Lower cure rates, lower adenoma id, older patients, longer follow-up. This is an interesting paper.

The prevalence and characteristic features of cyclicity and variability in Cushing's disease.

Click here for full article: http://www.eje-online.org/cgi/content/full/160/6/1011

BlogTalkRadio with Dr. Friedman

2011-02-19T04:30:00.001-06:00

Struggling with Cushing's?

Undiagnosed but your gut says you have it?

Post op pituitary surgery?

Persistent Cushing's and still sick?

Pre-op or post-op bilateral adrenalectomy?

These free online chats are for you. MaryO, founder of www.cushings-help.com and http://www.cushie.info/index.php, and Robin, active board member/blogger of http://survivethejourney.blogspot.com/ and http://cushings365.posterous.com/, interview Dr. Theodore Friedman, an endocrinologist based in Los Angeles, CA. Dr Friedman has helped many fellow Cushies, and I am proud to have him as my doctor now.

Interview with Dr. Ted Friedman DR. F 1/29/2009 - CushingsHelp | Internet Radio | Blog Talk Radio

Second Interview with Dr. Ted Friedman DR. F 3/12/2009 - CushingsHelp | Internet Radio | Blog Talk Radio

Dr. Ted Friedman Returns for his Third Interview 2/13/2011 - CushingsHelp | Internet Radio | Blog Talk Radio

In his private practice, Dr Friedman charges $450 an hour for his time. He has generously donated three hours to us Cushies in these blog chats, and it is far more valuable than the $1,350 you would have paid if you had the exact same conversations in his office. This information is priceless, because it *empowers* patients with knowledge to overcome this rare and rascally disease that doesn't want to go down without a fight.

These chats explain why our local endocrinologists' conventional understanding of and protocol for cushing's does not help all of us. In fact, Dr. Friedman helps us understand that the process of testing, diagnosis, treatment, and surgery (-ies) for patients with cyclical cushing's is very different from florid Cushing's patients. He and his colleagues work very hard to ensure his research findings make their way into the medical literature in hopes of shaping future treatment of mild or episodic cushing's patients.

Also, be sure to read Dr Friedman's latest paper, aptly titled:

High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing’s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing’s Syndrome Requires Multiple Testing

http://www.goodhormonehealth.com/episodic%20cushings-hmr.pdf

-mm

Spinning Out of Control

2011-02-03T03:25:00.001-06:00

I am pleased to see more and more articles about Cushing's on the internet. I repost them here, hoping that someone will see themselves in one of these articles. If I can help someone put a name to what ails them, then I have done my small part.

However, I do want everyone to realize that not all cases of Cushing's are resolved with one surgery. I know many people who go on to have more than one pituitary surgery, and maybe even a bilateral adrenalectomy in an effort to stop cortisol production at the source. Some even go on to have gamma knife radiation to zap remaining ACTH-producing cells on their pituitary.

Patients with cyclical/ periodic/ episodic/ persistent Cushing's will struggle much more with diagnosis, treatment, and cure. Please just keep this in mind.
~Moxie Melissa

* * * * * * * * * *

Spinning Out of Control

Unexplained symptoms left Shana Leslie feeling like an old woman trapped in a 30-year-old’s body.

Throughout 2007, Shana Leslie* developed acne, experienced increasingly shorter menstrual periods and gained more than 20 pounds, mostly in her midsection. Her friends were not surprised. “I had just turned 30, was in the middle of a divorce and had recently been promoted at work,” says Ms. Leslie. “So everybody told me it was related to stress.”

Spinning Out of Control: Cleveland Clinic's Diagnosis Challenge, Summer 2010

New Testing Protocol is Needed

2011-02-02T01:28:00.001-06:00

Are you struggling to get diagnosed? Is your doctor refusing to order any more cortisol tests because the ones you have had came back normal? Do you feel in your gut that Cushing's encapsulates ALL the odd symptoms that you've had for years that no doc can really treat or cure? Well, this is the article you have been waiting for.

Dr. Friedman's latest paper outlines the need to reconsider the testing protocol for patients who experience episodic or cyclical Cushing's. This is a good read.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

Horm Metab Res.

2010 November; 42(12)

T. C. Friedman,¹ D. E. Ghods,¹ H. K. Shahinian,² L. Zachery,¹ N. Shayesteh,¹ S. Seasholtz,¹ E. Zuckerbraun,¹ M. L. Lee,¹ and I. E. McCutcheon³

¹Division of Endocrinology, Metabolism, and Molecular Medicine, Charles Drew University of Medicine and Science, Los Angeles, CA, USA

²Skull Base Institute, Los Angeles, CA, USA

³Department of Neurosurgery, MD Anderson Medical Center, Houston TX, USA

Correspondence T. C. Friedman, MD, PhD Charles Drew University of Medicine & Sciences, Division of Endocrinology, 1731 E. 120^th. St., CA 90059, Los Angeles, USA, Tel.:+1/310/668 5197, Fax: +1/323/563 9324, Email:theodorefriedman@cdrewu.edu

Abstract

Many Endocrinologists believe that a single determination of eucortisolism or a single demonstration of appropriate suppression to dexamethasone excluded Cushing’s syndrome, except in what was previously thought to be the rare patient with episodic or periodic Cushing’s syndrome. We hypothesize that episodic Cushing’s syndrome is relatively common and a single test assessing hypercortisolism may not be sufficient to accurately rule out or diagnose Cushing’s syndrome and retrospectively examined the number of normal and abnormal tests assessing hypercortisolism performed on multiple occasions in 66 patients found to have mild and/or episodic Cushing’s syndrome compared to a similar group of 54 patients evaluated for, but determined not to have Cushing’s syndrome. We found that 65 of the 66 patients with Cushing’s syndrome had at least one normal test of cortisol status and most patients had several normal tests. The probability of having Cushing’s syndrome when one test was negative was 92 % for 23:00 h salivary cortisol, 88 % for 24-h UFC, 86 % for 24-h 17OHS, and 54 % for nighttime plasma cortisol. These results demonstrated that episodic hypercortisolism is highly prevalent in subjects with mild Cushing’s syndrome and no single test was effective in conclusively diagnosing or excluding the condition. Rather, the paradigm for the diagnosis should be a careful history and physical examination and in those patients in whom mild Cushing’s syndrome/disease is strongly suspected, multiple tests assessing hypercortisolism should be performed on subsequent occasions, especially when the patient is experiencing signs and symptoms of short-term hypercortisolism.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

Meditate vs. Surgery?

2011-01-29T04:26:00.001-06:00

This article does a good job of describing what happens to a society that is stressed out. Mediation may help many. For a patient with Cushing's, it is not so simple. We can not meditate our tumors away. Friends, families, and doctors tell Cushies to relax, calm down, and destress. An undiagnosed Cushie may try but will fail. A diagnosed Cushie or one currently testing for Cushing's can only wish we had that much control -- or any control -- over the excessive cortisol our bodies make. Without our permission, cortisol ravishes our bodies and mucks up all of our other hormones. For us, peace only comes when all tumors are removed from our bodies.

Please Meditate: Inner Peace Can't Wait

http://www.huffingtonpost.com/olivia-rosewood/please-meditate-inner-pea_b_801...

Brains at Yale Get Spruced Up - Ideas Market - WSJ

2011-01-29T03:49:00.001-06:00

Love this! Dr. Harvey Cushing and his awesome brain collection are getting their rightful place at Yale. I can't wait to get better and lead a pilgrimage of Cushies to the Cushing Center. How amazing would that be? Maybe we could get the NYT to cover us? What a story and spectacle that would be. http://blogs.wsj.com/ideas-market/2011/01/24/brains-at-yale-get-spruced-up/

p.s. See my original post at http://cushingsmoxie.blogspot.com on August 29, 2010.

Obese American goes to India for gastric bypass; doctors find brain tumor

2011-01-27T08:29:00.001-06:00

http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery...

Plain ol' Obesity or Cushing's?

2011-01-27T02:19:00.001-06:00

Weight loss surgery is not for everyone. If you have Cushing's, the docs are jacking with the wrong organ. That will definitely NOT make you better.

When I see an obese person, I never just see an obese person. I look for signs of cushing's. It's actually shocking to see so many with the tell tale buffalo hump, red cheeks, acne, bruising, skinny arms and legs. Cushies are everywhere. I just wish I could stop and talk to every one that I see, to make sure they get checked for Cushing's. I stop and discuss when I can, but alas, there are just not enough minutes in the day.

Have some empathy folks. You never know the struggles of those around you. -mm

**********

In the unique case which will strengthen the confidence of the World in the abilities of Indian doctors, team of specialist Fortis Hospitals Mulund correctly diagnosed and treated a 35 year old US national Ms Michelle Hardin of brain tumor. The US doctors had earlier diagnosed the condition as a case of obesity and recommended Gastric Bypass Surgery.

click to learn more

In the last few years Ms Hardin’s weight increased from 190 pounds to 300 pounds (86 kg to 136 kg). She also suffered from diabetes and hypertension. “I tried various diet control measures but to no avail. Also I had excessive thirst and would drink almost 8 liter of liquid daily and would feel always hungry. My obesity caused breathing difficulty (sleep apnea) and for which I used a special machine (CPAP Machine) to keep oxygen under pressure. Seven months back I took an expert opinion in US, where I was asked to undergo Gastric Bypass Surgery (GBS) to treat obesity. Since GBS was very expensive in US, I thought of undergoing the treatment in India.” Ms Hardin

Ms Hardin decided to visit Fortis Hospital to consult Dr Ramen Goel who has a vast experience of performing thousands of advanced laparoscopic surgeries including bariatric surgeries.

“Ms Hardin visited us with the known fact that she had to undergo Bariatric surgery through Gastric Bypass method. Detailed investigations at the hospital however revealed that she actually had a Pituitary Tumor on the right side of the pituitary gland of about 1cm in diameter. The weight gained was actually because of this pituitary tumour and not because of any case of obesity. I referred her to Dr Milind Vaidya, Consultant Neurosurgeon who has an expertise to remove the tumour through minimally invasive procedure.” said Dr Ramen Goel.

Dr. Milind Vaidya, Consultant Neurosurgeon, Fortis Hospitals Mulund said, “The tumor, situated in pituitary gland at the base of the brain, triggered excessive production of cortisol hormone by the adrenal glands leading to complications like uncontrolled diabetes, hypertension and weight gain. We treated her by transnasal- transsphenoidal excision of the pituitary tumor (a minimally invasive procedure) on 14th Jan 2011.”

Dr Vaidya used an endoscope & microscope to reach the tumour through her nostrils. He used both the nasal openings to reach the tumour to avoid incision or scar. He took special care to remove every bit of the tumour, to achieve cure and preserve the normal pituitary gland.

Ms Hardin had an uneventful excision of the right sided tumor and the normal pituitary on the left side was left untouched. Her nasal pack has been removed and she is doing well post-operation, with diabetes & hypertension under good control.

“I was shocked to learn that I suffered from tumour. I thank the doctors of Fortis Hospital. Had there been no timely intervention from them I wouldn’t know what would have happened to my life. Post operative my thirst & appetite have reduced markedly to normal levels. Doctor assured that my weight will be restored to normalcy gradually.” Ms Hardin.

According to Dr Vaidya, “Ms Hardin’s life is today safe and secure only because of timely detection. Had we continued the treatment of GBS or had we wrongly diagnosed the case, her condition could have been critical. Hence timely detection and right expertise is very crucial. This case is a testimony to the quality and credibility of Indian Healthcare expertise.”

Today India is considered as the best treatment destination by foreign patients as they can avail the finest medical facilities at affordable rates. Fortis has partnered with Indushealth in the US who has played a significant role in helping many such international medical travelers avail quality healthcare services at Fortis.

From http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery-in-the-us-35-year-old-american-lady-weighing-136-kg-was-correctly-detected-of-brain-tumor-at-fortis-hospitals-mulund/

This blog post is posted from Cushing's & Cancer at http://cushingshelp.blogspot.com/

Fighting Fire with Fire? Just leave me alone!

2011-01-22T00:18:00.001-06:00

My knees have been burning so much today. I sit in a chair, with my legs bending naturally at the knee and hanging down. The muscles on the side of both knees burn like they are on FIRE within 30 seconds. I have to straighten them out to relieve the pain. Rinse. Repeat. Other times, I sit with my legs up in the recliner, keeping my legs straight in an effort to avoid the burning. When I let my feet down to stand, my knee joints are so stiff I can hardly walk. Boo. I hate you, Cushing's disease.

Doctors unlikely to spot Cushing's

2011-01-20T23:01:00.001-06:00

That degree on the wall means your physician graduated medical school. It DOES NOT tell you which ones made As and which ones made Ds.

--mm

Physicians can perform poorly when patients need special care, study suggests.

http://www.sciencedaily.com/releases/2010/07/100719174905.htm

"Physicians did quite well at following guidelines or standard approaches to care, but not so well at figuring out when those approaches were inappropriate because of a particular patient's situation or life context."

So, to me, this reinforces the need for cushing's patients to become an expert about the disease and advocate for the improvement of their health. Docs are less likely to put all of the pieces together, but when they do, the good ones do it in the same amount of time it takes a bad one to blow you off!

Take a look on the sidebar for the link for Tips to Get Diagnosed Quickly.

Anxiety and Endocrine Disease

2011-01-20T00:11:00.001-06:00

This is a fascinating literature review about the classic chicken-and-egg debate for endocrine patients. Doctors insist my depression, weight gain and not wanting to interact with others is related to my ANXIETY instead of my anxiety being one of many symptoms of my ENDOCRINE disorder.

"In reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered."

HALF?! These MDs need to get with the program! Listen to your patients! When patients say they feel anxious and depressed and we tell you that we *tried* all of the stress reducing advice and we are still anxious, keep digging and thinking until your patients feel better. What a concept! Please do not make assumptions that we are lying or over-exaggerating just because you don't know the answer. Figure it out, as it is literally the reason you get paid the big bucks. The weight of this burden should not just fall on our shoulders, but on yours as well.

-mm

http://www.drrichardhall.com/anxiety.htm

"The first step in defining whether an anxiety disorder is due to a general medical condition is to establish the presence of a general medical condition that is often associated with the production of anxiety symptoms. The DSM-IV defines the most common endocrinological conditions associated with anxiety states as hyper- and hypothyroidism, hypoglycemia, pheochromocytoma, and hyperadrenocorticism. Anxiety may also occur following the exogenous administration of estrogens, progesterone, thyroid preparations, insulin, steroids and birth control pills. Popkin, in addressing the issue of endocrine disorders presenting with anxiety, suggests that anxiety states frequently occur in association with adrenal dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. Popkin cautions that prospective, carefully controlled studies on the etiology of anxiety in these conditions are lacking. The studies that are cited are almost exclusively case reports. He argues for more structured and careful research into the organic basis of these conditions.

Jefferson and Marshall identified hyperthyroidism, hypoglycemia, pheochromocytoma, and hyperadrenalism as the medical illnesses most often associated with anxiety symptoms and most frequently misdiagnosed initially as a primary anxiety disorder.

Hall et al in a study of medically induced anxiety disorder found thyroid disorders, i.e., hyper- and hypothyroidism and thyroiditis, to be the most frequent medical conditions misdiagnosed as primary anxiety disorder.¹¹Other common medical causes for anxiety in their study included hypoglycemia, Addison's and Cushing's Disease, hyper- and hypoparathyroidism, and diabetes mellitus. Rarer causes included various virilizing tumors and hypo- and hyperpituitarism.

Differentiating Anxiety Associated with Medical Illnesses from Primary Anxiety Diseases

After the clinician has established the presence of a general medical condition known to be associated with significant anxiety symptoms, he/she should undertake a careful and comprehensive assessment of the factors necessary to link the two conditions. Although there are no absolute guidelines, certain associations are helpful in establishing this connection. Are the onset of the symptoms temporally related? Is there a temporal association between the exacerbation or remission of the general medical condition and the enhancement or abatement of anxiety symptoms? Do anxiety symptoms disappear when the primary medical condition is treated? Are features that are atypical of a primary anxiety disorder present such as the usual age of onset, the initial presentation, type of onset, or an absence of family history? The clinician should also judge whether the disturbances that are present may be better accounted for by the presence of a primary anxiety disorder, a substance induced anxiety disorder, or an adjustment disorder brought on by the diagnosis of a primary medical condition.

In earlier work, reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered. In comparing these patients to patients with primary anxiety disorders seen in clinic, certain characteristics differentiated the patients with organic anxiety from those who suffered from a primary or psychogenic anxiety disorder. 1.) Patients with anxiety secondary to underlying medical illnesses tended to have disease characteristic fluctuations in the severity and duration of their anxiety or panic attacks. 2.) There was a clear cut association between the progression of their anxiety and their underlying disease. 3.) Medically induced anxiety disorders were most likely to have onset before the age of 18 or after the age of 35 in patients with a negative personal and family psychiatric history of anxiety or affective disorders and in patients who had not previously suffered from anxiety symptoms."

Fitness fanatic goes from size 10 to 18 in weeks after pituitary gland tumour | Mail Online

2011-01-19T16:52:00.001-06:00

Do you see your story when reading Kathryn's?

http://www.dailymail.co.uk/health/article-1348504/Fitness-fanatic-goes-size-1...

Trip Recap

2011-01-14T23:18:00.001-06:00

So much has happened in the last few days. I'm on the plane with 30 minutes left in my 3 hr non stop flight home. Cloud cover prevents me from seeing the kitties below, but we must be over Texas by now.

Many Cushing's patients travel from all over the US and Canada to receive treatment in Los Angeles. I'll provide more details later on that. So, I thought I'd share travel info with my Cushie friends in hopes of making their medical trip a tad more pleasurable.

Rather than tell the story chronologically, I decided to try to write in little bits and pieces. Some will be medical. Some will be touristy. Some will be my random thoughts, and that's allowed because it's my blog. :)

I lived in Los Angeles and Long Beach a decade ago. It has been the most favorite city that I've ever lived in. That's saying something, too. I have lived in 10 different cities since flying my mama's coup for college. My point? I love LA to pieces, and I'd love for you to experience the LA that I know and love.

Let's start with these wonderful plants--birds of paradise. They are everywhere, and they always a lovely reminder that the warm sun keeps the City of Angels exciting and exquisite. ~ mm

See and download the full gallery on posterous

Making Good Use of our Time Away

2011-01-10T19:54:00.001-06:00

If we have to spend thousands of dollars to travel to see Cushing's specialists, we should at least have some fun while we are at it.

I am super excited that Colin Firth, the actor, is getting his star on the Hollywood Walk of Fame this week!!! I am totally going!!! He is one of my favorites :) He is a total doll face.

Colin Firth
("Bridget Jones", "Pride and Prejudice")

Thursday, January 13, 2011 at 11:30 a.m.
(6714 Hollywood Blvd, near McCadden)

Cushies, you can check the schedule to see who will be here the week you have your appointment out here. Heck, you can schedule your doctor appointment around this schedule! Hahaha

CELEBRITIES ABOUT TO RECEIVE STARS ON THE HOLLYWOOD WALK OF FAME

The celebrities listed below will appear in person on Hollywood Blvd or Vine Street to receive their stars. (Except, of course, for those awarded their stars posthumously).

http://www.seeing-stars.com/Calendar/index.shtml#WalkOfFame

See and download the full gallery on posterous

Life as a Cushie

2011-01-10T16:21:00.001-06:00

I am starting a series, like a photo essay, trying to explain how Cushing's impacts my daily life. Today, I point out that the seat belt in the airplane is near the maximum allowed length. It's around my waist with but an inch to spare. Thankfully it is a little loose. I almost cried when I buckled up today. My stomach has gotten so big. I just don't feel like this is my body anymore. It has a mind of its own, following cortisol's instructions instead of mine.

Like other embarrassing or emotional debilitating moments with this disease, I acknowledge it, and I release it. These thoughts no longer serve me, and I'm doing the best I can. Fighting for myself. Trying to figure out a loop hole in the system to try to get myself better sooner. I have pushed myself all along. I will try to forgive myself and be more understanding of my situation in 2011. Kindness to all, including myself.

-mm

See? Flying High

2011-01-10T16:20:00.001-06:00

Life as a Cushie

2011-01-10T12:32:00.001-06:00

Heading for Help

2011-01-10T12:30:00.001-06:00

I am sitting on a plane, headed to Los Angeles, CA. I hope that my search for a compassionate and knowledgeable doctor will end with my appointments this week.

Many Cushing's patients have guided my decision to try this doctor. He is a cushing's specialist. These patients blazed the path, and I thank them for all of their efforts to help fellow Cushies.

I will be updating from LA. I hope it will helpful and informative to go on my trip with me.

-- mm

GET YOUR LABS THROUGH AN APP :)

2011-01-09T20:13:00.001-06:00

I have a major issue with testing all the time for Cushing's. Besides the obvious hassle of *having* to test so much to prove that I am sick, I want my results ASAP. I do not want to wait. I don't need a doctor to tell me what they mean (well, 90% of the time), and I certainly don't like asking the nurse or caller follow-up questions for no real answers. I have realized they are just reading or repeating what the doctor said.

My life saving go-to websites are LabTestsOnline and Cushing's Help and Support message boards. I get so much more information in real terms that I can understand from these sites. Then, I take what I learn and discuss it with my doctor at the next appointment.

So you can imagine my thrill in finding out Quest Diagnostics has a new free app called Gazelle. This app is available in select states and on the Apple® iPhone, iPod Touch, and BlackBerry® Curve, Bold, Tour, and Storm. Android is coming soon!

After registering with Quest Diagnostics, click lab results. You will enter the date of service, doctor's name and phone number. You get an email confirmation that your request was received. Labs are not returned immediately, unfortunately. They are emailed a few days after the request is made. The system emails it to the email addy in your profile. The abnormal values are highlighted in blue. Easy to read! Plus, it's a good first step in my efforts to get all of my medical records digitized and easily accessible online. In addition, the patient can email the results to any email address. I email them to myself, and voila! Digital copy :) I am super pleased with this development.

Here is a link to all Quest Diagnostic apps.

I have an appointment with Quest for a blood draw this Wednesday. After my appointment, I plan to enter the information into the app, so that I will have an email as soon as they are ready. I really hope this system is responsive and resolves my need-to-know inclinations. It's my life, my labs, and I want them :).

Viva la digital revolution!

~mm

HERstory: A look back

2011-01-08T11:15:00.001-06:00

I wanted to share a post I wrote nearly one year ago. The HerStory post shows my previous collage and how to make one for yourself.

~Moxie Melissa

Change's a-Comin'

2011-01-08T11:12:00.001-06:00

You may notice that some recent posts are short and look different from my previous entries. That's because I found a way to post to the blog more efficiently, which hopefully, translates to more often. So! I will be passing along all sorts of goodies: medical articles, trip updates, MRI results, etc. I hope you are up for the traffic increase! As always, you are welcome to email me at any time at moxiemelissa (at) gmail.com. :D

Cushing's Moxie: Fighting The Worst Disease You've Never Heard Of

Spread the Word.

The Internet Rescues A Family

FULL ARTICLE: Subclinical Cushing’s syndrome: definition and management

Clinical Endocrinology

Summary

Definition of subclinical Cushing’s syndrome

The concept of subclinical hypercortisolism

Investigational drugs may expand medical treatment of Cushing’s syndrome

Fatal Infections Linked to Neti Pots

My Friends with Adrenal Insufficiency

My Friends with Adrenal Insufficiency

Cushing's Gets Much Needed Media Attention

Symptoms And Causes Of Cushing’s Syndrome

Why is Cortisol Necessary?

Causes of Cushing’s Syndrome

Symptoms of Cushing’s Syndrome

Treatment of Cushing’s Syndrome

Hope & Stem Cells

Pituitary Glands Made from Stem Cells

I'm Back, Giving Testing a Final Go

PARTICIPATE: Quality of Life Survey

Information about this survey and your consent to participate

Glimmer of Hope: Delayed Remission

Full text available for free in pdf here.

Abstract

Why Obesity Is A Disease

Dumb da Dumb Dumb..... DUMB!!!!

Subtle Cognitive Impairments in Patients with Long-Term Cure of Cushing’s Disease

Abstract

CUSHING’S: Relentless and Nefarious

Obesity Research: Consequences vs. Causes

This is your Life.

Cushing’s Syndrome during Pregnancy

Addison's Disease Poses Risks To Patients

Greater Awareness Needed On Risks That Addison's Disease Poses To Patients

Hair Samples: Better Testing

New Method To Measure Cortisol Could Lead To Better Understanding Of Development Of Common Diseases

Cushing's Disease: Unraveling a Medical Mystery

Recovery: Post Op Day 14

93 Years Old and Still Dancing

Cushing's in the News

Think Like a Doctor: A Litany of Symptoms Solved! - NYTimes.com

Think Like a Doctor: A Litany of Symptoms Solved!

Think Like a Doctor: A Litany of Symptoms - NYTimes.com

Think Like a Doctor: A Litany of Symptoms

Push to spur more drugs for deadly rare diseases

And You Thought I Was Pitiful Before...

Endocrine-Disrupting Chemicals

I think this is one reason Cushing's is more common than it used to be. Watch your endocrine disruptors, friends. - m

Pediatricians Call for Increased Regulation of Endocrine-Disrupting Chemicals

http://www.endocrinenewsnow.org/2011/04/pediatricians-call-for-increased.html

Corticosteroids conversion calculator (hydrocortisone, dexamethasone, prednisone, methylprednisolone, betamethasone

Worthless hospital pain scale thingee

Post op day 4

Saturday update: oUT!!!

It's, tumorless Melissa, making a report

Day 3 post-op update

Bedside update

One 4mm tumor successfully removed!

Surgery is done... waiting for update

Pit tumor part deux - update

Procedure underway

Queue?

Onward!

Tumor Willis & any Annoying Sister-- BE GONE

CUSHING'S AWARENESS: *Again*

A Glimpse of Cushings.. by the numbers!

Cushie Warriors

Pituitary Adenomas

Fundraising Efforts

Fundraising for Cushing's Awareness Month

UPCOMING PITUITARY SURGERY SCHEDULED

Low Expectations, Contracts, and All Types of Feasances

Totally and Utterly Preposterous

pre·pos·ter·ous

Anthony, from one Cushie to another, I wish you success on your radiation or your next surgery. I'm sorry for what has happened to you.

Power Users: Enough Said

Harvey Cushing: Rocking Modern Medicine

Pay No Attention to the Girl Behind the Smile

CUSHING'S AWARENESS: Again

Patients with cyclical/ periodic/ episodic/ persistent Cushing's will struggle much more with diagnosis, treatment, and cure. Please just keep this in mind.
~Moxie Melissa