Saturday, June 7, 2008

How did you find out about Cushing's?

I have been out of politics at the local level for far too long… since the November 2006 election, in fact. Many of you have wondered what on earth I could be doing for these 19 months. How could I be this quiet?!

First of all, let me start by saying thank you. I thank you for all the calls and emails. I do apologize for not being so good at getting back to you. I do have an explanation, and I hope you will indulge me a bit and read a bit further. I promise it is not your standard the-dog-ate-my-cell-phone excuse.

I also wanted to take a few moments to write down all of my thoughts and information in one place. I want people to be able to read my words, so there is no confusion about what this is or isn’t.

I hope that by telling about my experiences, I will help inform at least one person (or a dozen :) about Cushing's. I've included some resources that it has taken me over a year to find. I put it in one place to make things easier: photos, diagrams, videos, articles, etc. The videos on the left navigation bar are fascinating and very informative. I hope you will stick around and check things out. ~Melissa

*******

As you know, I moved with my fiancé Jonathan to San Antonio in November 2006 for a job opportunity for him. I took some time off post election as we moved into our first home, geared up the wedding planning, and tried to enjoy the holidays. Very quickly, however, I realized something was wrong with me. I didn’t feel like myself. For the next four to five months, I was stressed still, confused, crying a lot, feeling depressed, posting high blood pressure, gaining a lot of weight, and missing menstrual periods (2nd time in 14 months where I missed 4 periods in a row). I had terrible pains in my whole body, muscles and legs. I was a mess. Thinking all the wedding planning stress was the culprit, we decided to move the wedding from April to October 2007.

A few months later, there was really no relief from my symptoms. In March 2007, I went to my primary care doctor who checked my thyroid levels. The tests came back normal. The doctor was nice but didn’t have any concern to continue to test me. I cried. I knew there was something wrong with me. I was determined to find out what it is. I took to the internet and within an hour I found my answer.

I will never forget that day: March 28, 2007 at 4:53 pm. A quick research of my symptoms brought me devastating news.

I suspected that I had Cushing’s disease. Nine months, $100,000 in medical bills (our portion was only $4,000), and countless doctor visits, two MRIs, tubes of blood for lab work, and more tenacity than I knew I had got me to the end. On December 20, 2007, I would finally hear my San Antonio neurosurgeon give that same diagnosis: Cushing’s disease.

My endocrinologist says that Cushing’s is the most difficult diagnosis in the field of endocrinology if not all of medicine.

Leave it to me to be so extraordinary!

I am devoting this blog to create awareness for Cushing’s disease. It is my little attempt to shed light on this disease by sharing my own struggles and experiences on the path to diagnosis and, eventually, surgery.

I hope you will take a moment to read further.

Cushing’s is underdiagnosed because so many of its symptoms overlap with other, more common diseases. Doctors treat those diseases while telling us that Cushing’s is far too rare for us to actually have. The doctors-turned-mathematicians tell us that it is nearly statistically impossible for us to have Cushing’s. Yet, patient after patient have proven them wrong—through pathology confirmation at surgery—but there is still many more doctors and patients to reach out there.

********

WHAT IS CUSHING’ DISEASE?

Cushing’s disease is a very rare disease that affects an estimated 10 to 15 people per million per year, or about 3,500 people per year in the US alone. Those of us with this disease feel like this number grossly underestimates how many undiagnosed people there are.

Cushing's disease affects women five times more frequently than men.

Cushing’s disease caused by a benign tumor located on the pituitary gland, the little bean size gland hangs just below the brain. Named the “master gland,” the pituitary gland controls every hormonal process in the body.

These tumors are benign, or non-cancerous, tumors of the pituitary gland secrete increased amounts of ACTH. Most patients have a single adenoma. After two brain/pituitary MRIs and consults with two different neurosurgeons, we now know that I have two pituitary tumors: a 5 millimeter tumor on the right side and a 3-millimeter tumor on the left side. While small—teeny tiny most would say—these little buggers are wreaking hormonal havoc on my body. Even a tumor of one cell can cause major upheaval to a person’s hormonal balance.


WHAT DOES CORTISOL DO FOR THE BODY?
Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system's inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. One of cortisol's most important jobs is to help the body respond to stress. For this reason, women in their last 3 months of pregnancy and highly trained athletes normally have high levels of the hormone.

When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body's daily needs. However, if something goes wrong with the adrenals or their regulating switches in the pituitary gland or the hypothalamus, cortisol production can go awry.






SYMPTOMS ASSOCIATED WITH CUSHING’S DISEASE

  • Rounding of the face (moon face)
  • Facial redness (facial plethora or red cheeks)
  • Acne

  • Hump on back of neck (dorsocervical fat deposition), called a buffalo hump
  • Weight gain around the belly with thinner arms and legs (truncal obesity) despite efforts to lose weight (lifestyle modifications)
  • Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms
  • Thicker or more visible body and facial hair (hirsutism)

  • Muscle weakness
  • Extreme fatigue
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Bone thinning (recurrent fractures, osteoporosis)
  • Recurrent infections
  • Sleep disturbances (waking in the middle of the night)
  • High blood pressure
  • Diabetes mellitus
  • Depression, anxiety, crying, and irritability
  • Confusion, mind fog, slowed memory

  • Low self-esteem

  • Irregular or absent menstrual periods in females

  • Decreased sex drive

When I read this list of symptoms, I couldn't believe myself. I knew I had just diagnosed myself. I was in shock. I was amazed. I had to wait over an hour before Jonathan came home from work. I remember that I waited for him to enter the house. I gave him a hug, and then I said, "I think I have Cushing's disease, and if it is, there is a 70% chance I have a tumor in my brain or pituitary." He of course was shocked too.

Not only did I experience nearly all of the symptoms on the list, I knew when I read the words "buffalo hump" that this was it. I just knew this is what I had.

Here is the buffalo hump picture I saw on the internet:




Here is my buffalo hump.








I searched the internet to see what else could cause a buffalo hump.

  • Cushing's disease

  • Long term use of steroids

  • Morbid obesity

  • AIDS medications

  • Kyphosis

  • Pituitary tumor

  • Hyperinsulinaemia



I looked up all the unfamiliar terms, and I knew they didn't apply. It could only be Cushing's.

I set up an appointment to see a doctor that was listed as an endocrinologist in San Antonio who understood Cushing's. However, I couldn't get in to see him until May 9th.

So for the next six weeks, I researched. I read. I cried. It was so painful to watch my body get worse. The waiting was awful. I noticed weight gain, sleep loss and a sudden personality change. I felt like my life was spiraling downward. I recorded 40+ symptoms in a journal to monitor patterns in my illness.

I didn't feel like myself, and I remember the probability lessons from my math classes. If I only had a few symptoms from the above list, I couldn't say with much probability that it was Cushing's. But as my list of symptoms and health complaints mirrored nearly every one of the symptoms for Cushing's, I knew it made the diagnosis of Cushing's even more probable--and very improbable that it could be several other diseases all happening at the same time. A doctor later confessed that doctors are taught to find one diagnosis that fits the slate of symptoms. However, because doctors believe Cushing's is so rare and improbable, they often treat the symptoms. As a result, the patient rarely improves and years pass before the patient gets the help s/he needs and deserves.

So I pushed forward, sought out information and specialists, all trying to see if I had indeed diagnosed myself. If not, I was prepared for someone to tell me what else it could be. As the days and months passed, doctors scratched their heads about my high cortisol and ACTH test results but yet hesitant to say for sure that it was Cushing's.

I always knew. And I will always be happy to say that, I was right. Even with news this devastating, it was important to finally know what ailed me. To my dying day, I will always be proud of my ability to trust my instincts and move forward despite all that I faced. :)


LONG TERM COMPLICATIONS FROM CUSHING’S
If you don't receive prompt treatment for Cushing's syndrome, other complications may occur, such as:

  • Bone loss (osteoporosis), due to the damaging effects of excess cortisol
  • High blood pressure (hypertension)
  • Kidney stones
  • Diabetes
  • Unusual infections (some patients suffer from boils)

Luckily, I caught my case of Cushing's early enough that I don't have any of these long term complications. Unfortunately, I know many ladies and gentlemen who have these and are still struggling with doctors to get diagnosed. Over the years, the body becomes debilitated by the overproduction of cortisol, and the body's systems are compromised.

Friday, June 6, 2008

Rigors of Testing







Testing for Cushing's is the most drawn out and convuluted experience I've every seen in the medical world.


STEP ONE: GET YOUR CORTISOL LEVELS TESTED

First, a patient must convince a doctor to test for Cushing's. As I stated before, doctors are reluctant to order tests. They often are completely dismissive and resort to pithy lectures about diet, exercise, nutrition, and portion control. Some, in fact many, patients are ridiculed by the doctor's completely inappropriate, unprofessional comments. On the message boards, we read heart-breaking yet infuriating exchanges like this nearly daily:

Doc: Just step away from the chocolate cake.

Patient: I don't eat chocolate cake.

Doc: Well, obviously, you do.


Second, women are five times more likely to be affected by this disease than men. We Cushing's patients feel that male doctors are dismissive of us female patients because most women are conscious of their weight. We know we sometimes eat stuff we aren't supposed to. However, we know that the rapid weight gain we experience can not be explained by one meal splurge, but the doctors won't listen. Many doctors push a patient off and tell them to diet and exercise and come back again in six months. I soon realized that the doctors are looking for a solution they can write down in their little charts to make it seem like they are helping us. They are not.

I do understand that the doctors are treating the most obvious symptoms. With weight, our society knows of no other ways of gaining weight other than eating more and losing less. So, I know that doctors are under that mindset, too.

However, as medical professionals, I was disappointed that doctors do not listen to the patients, do not spend any time analyzing the long list of symptoms that we Cushies bring to our appointments, do not proceed with medical curiosity to find what ails the patient. They are too quick to say, "High blood sugar... you're a diabetic. Aches and pains... must be fibromyalgia. Missed periods... you have PCOS."

So,


I have been extremely disappointed with the medical community and their approach to this rare disease.


STEP TWO: MAKE SURE THEY TEST YOUGET YOUR CORTISOL LEVELS TESTED
STEP FOUR: GET HIGH TEST RESULTS
Q: I just got some very high test results at Camp Cushie. I had high ACTHs at 4 am, high cortisol serums at midnight and during the day. What happens from here? Even though I'm still waiting for a few more test results , I am not sure how many might be needed.
A. That is a very good question. The answer eludes me. I have been on the boards for over a year, and I have yet to figure out how many 'greens' mean go.
In all likelihood, they will ask you to continue to test, no matter how high your numbers are.
It is not just about how many high tests you get, but how high each of those tests are.
They will also want you to test again to make sure your body can replicate these high numbers. Lab results aren't definitive with this disease. They are the start of suspicion about Cushing's, but your testing will likely continue in order to prove it.
You have a better shot at a quicker path if all tests point to Cushing's in a BIG way: UFCS, salivas, midnight cortisol serums, ACTHS, even daytime cortisol serums.
It will also depend on whether there is a visible tumor. If not, they may want you to test, no matter how high your results are, while they try to wait for a tumor to show.
Only your doctors can make that determination when the time is right for you.

SUMMARY OF MY CUSHING'S TESTING RESULTS

1) random ACTH plasma
Suggestive of Cushings: 48+; normal range: 5-27
My results: 14, 14, 15, 16, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 28, 29, 41, 78, 105

2) midnight salivary cortisol
Suggestive of Cushings: 5+; normal range: less than 0.17
My results: 0.07, 0.07, 1.1, 1.3, 1.6, 1.7, 1.7, 1.7, 2.2, 2.5, 2.8, 3.7, 4.1, 5.4

3) urine free cortisol (UFCs)
Suggestive of Cushings: 50 +; normal range: 4-50
My results: 7.5, 12.4, 14.4, 17.7, 22, 23.6, 23.6, 24.3, 26.6, 30.6, 37

4) cortisol serum
Suggestive of Cushings: 28+; normal range: 7-25

My results:
12 am 4.1, 5.9, 6.7, 7.0, 7.5 [midnight results: Suggestive of Cushings: 5+; normal range: less than 1)]
4 am 10, 12.5
8 am 7.6, 12, 14.3, 14.5
10 am* 4.8, 10.8, 11.3
12 pm* 3.3
4 pm* 3.6, 4.4, 5.1, 6.3, 7.1, 23
8 pm 3.5

* Low values suggest lack of diurnal rhythm.

NOTE: Lab error minimized because midnight test results processed in different labs in different states.


5) dexamethasone suppression test - I suppressed, so I failed the test.










PITUITARY TUMORS PRESENT







  • a 5 mm lesion on right mid pituitary, 1.5 machine



  • a 3 mm lesion on left pituitary, 3T machine

    We might take that to suggest that there is actually a tumor of the type occasionally seen, in which a "wrap-around" effect is seen as the tumor embraces the gland from both sides with a connecting portion in the middle--thus giving the appearance of 2 tumors when really only one is there. This kind of thing can only be determined at the time of a pituitary surgery. ~ email from Dr. McCutcheon






























Tim in Chicago (my Wonder Twin and fellow sassologist) says:




Melissa, some of your post are pretty tough to get through because they are so technical. I make my way through them b/c I care about you, but some days, it’s pretty challenging.




MRT says:




I pity the fool who can't get through the medical jargon. No really, I know. Imagine how I feel?! My life depends on knowing what this stuff means. Just picture another 10+ articles on this one procedure COUPLED WITH the mounds of medical articles on every other aspect of this disease. It is rough, but it is necessary. Believe it or not, I try really hard to simplify these technical posts. Sometimes I succeed, sometimes I don’t.




The Cushing’s mind is known to have difficulty with concentration, focus, memory, and word recall. One of my greatest heartbreaks of this disease is forgetting words when I sing songs. I have always prided myself on my singing bee abilities. Not anymore. But I try.




I try to give you the technical side as much as the emotional side in these posts, so that you can understand what all this means for me: the testing protocol, the diagnostic benchmarks, what kind of results we are hoping to see, and what I am going through. Just wait until I have to explain the surgery part to you!




I am including the description of the IPSS article that I found to be the MOST helpful and MOST simplified. Then I tried to summarize that. Now reading it, I think THEY did a better job than me. Besides, I know I have extremely smart friends and family. I bet you can make your way through it. ~MRT







"The role of inferior petrosal sinus sampling in the diagnosticlocalization of Cushing’s disease." Neurosurg Focus 23 (3):E2, 2007.

SHIVANAND P. LAD, M.D., PH.D., CHIRAG G. PATIL, M.D., EDWARD R. LAWS JR., M.D., AND LAURENCE KATZNELSON, M.D. Department of Neurosurgery, Stanford University School of Medicine, Stanford, California




Inferior Petrosal Sinus Sampling
The most sensitive method for differentiating between pituitary and ectopic ACTH secretion, IPSS is considered the gold standard for confirming the origin of ACTH secretion in patients with Cushing's Disease (CD). Originally described by Corrigan and colleagues in 1977, unilateral catheterization for selective venous sampling was introduced to differentiate ectopic ACTH secretion from pituitary Cushing’s syndrome. Inferior petrosal sinus sampling is recommended in cases of Cushing’s syndrome in which clinical, biochemical, or imaging studies have not clearly identified either a pituitary or an ectopic origin of the ACTH production. The high diagnostic sensitivity, specificity, and accuracy of IPSS have made it a standard tool in the investigation of ACTH-dependent Cushing’s syndrome. Technical Considerations Bilateral IPSS was initially introduced at the National Institutes of Health by Oldfield and Doppman in the early 1980s. In the early 1990s, Oldfield et al. described the use of bilateral petrosal sinus sampling with and without administration of CRH for the differential diagnosis of Cushing’s syndrome. (sorry, had to break it here)




In this technique, sheaths are inserted bilaterally via the femoral veins and advanced into the internal jugular veins and then into the inferior petrosal sinuses, where blood samples are obtained from each sinus. The plasma ACTH levels in these samples are compared with the levels in samples from a peripheral vein. Samples are taken simultaneously from both central catheters and the peripheral vein. Serial samples for central and peripheral plasma ACTH concentrations are drawn before and after CRH administration (1 mg/kg body weight). In Cushing’s Disease, a central-to-peripheral (central/peripheral) ACTH gradient results from high ACTH levels in venous drainage from the pituitary, and contrasts with the absence of a gradient in ectopic ACTH secretion. Without CRH administration, a basal ratio of central/peripheral ACTH values of 2.0 or greater is strongly indicative of Cushing’s Disease (mine was 14 to 1). Because ACTH secretion is episodic and sampling can miss the burst of ACTH secretion, however, CRH is used as a stimulating agent to increase the sensitivity of the test. Plasma ACTH samples are obtained from both inferior petrosal sinuses and peripherally at intervals following CRH administration. Without CRH administration, a basal ratio of central/peripheral ACTH values of 2.0 or greater is strongly indicative of Cushing’s Disease (mine was 14 to 1). A central/peripheral ACTH ratio of 3.0 or greater is strongly indicative of Cushing’s disease. (mine was 93 to 1) Most patients with Ectopic ACTH Syndrome have a central/peripheral ACTH ratio of less than 2.0 before and after CRH administration. Newell-Price et al. in a systematic analysis that included 21 studies and 569 patients, found that IPSS with CRH stimulation achieved 96% sensitivity and 100% specificity in discriminating Cushing’s disease from Ectopic ACTH Syndrome. With the increased adoption of IPSS worldwide and combining various reports of 726 patients who had Cushing’s Disease and 112 who had Ectopic ACTH Syndrome, there were 41 false negatives and seven false positives, providing a diagnostic sensitivity and specificity for IPSS of 94%. In a recent study by Swearingen et al. lower sensitivity and specificity for predicting a pituitary or an ectopic source were found. In that study, more than 50% of patients in whom the results of IPSS suggested an ectopic source were found to have an ectopic pituitary tumor. Therefore, lack of central localization by IPSS should lead to a search for an ectopic source, although the presence of a pituitary source should be considered further in such patients. In addition, in approximately 15% of patients in whom the results of IPSS are positive for central localization, histological confirmation of an ACTH-secreting pituitary tumor is absent. These unusual and contradictory findings need to be noted in the interpretation of this test. The validity of IPSS relies on successful cannulation of the inferior petrosal sinuses. Digital subtraction angiography must be performed to ensure correct catheter placement and to evaluate venous anatomy properly. A hypoplastic or anomalous inferior petrosal sinus was believed to underlie the false-negative IPSS results that were obtained in 0.8% of the patients in a large case series (501 patients). These patients were subsequently found to have surgically proven Cushing’s Disease. Other causes of ambiguous results include IPSS performed during a period of normal cortisol levels in patients with intermittent ectopic ACTH secretion and false-positive test results caused by CRH-secreting tumors. Efforts to improve the diagnostic accuracy include additional sampling during IPSS for other anterior pituitary hormones, including prolactin for normalization of ACTH ratios. When performed by a radiologist experienced in the technique, IPSS is successful in the great majority of procedures, and serious complications like stroke can be minimized.
















Pituitary Lateralization
Inferior petrosal sinus sampling has limited utility in localization of ACTH-secreting pituitary adenomas within the gland. A literature review, in which the authors analyzed data from 313 cases in which lateralization studies had been performed and used pituitary surgery as the criterion, revealed a range of diagnostic accuracy for localization of IPSS between 50 and 100%. A gradient of 1.4 or greater across both sides of the pituitary correctly predicted tumor location in 78% of cases. Booth et al. compared the efficacy of IPSS and the results of imaging studies for localization of pituitary tumors and demonstrated 70% likelihood of accurate localization using IPSS compared with 49% using imaging.








Lucy in Lousiana writes:




Q: Why did the doctor start in your groin and then go all the way up to your sinuses? Wouldn’t it be easier if they started in your neck and went up from there?




A: Alternative Sampling Methods: Jugular Venous Sampling
It has been suggested that stopping cannulation [inserting a cannula into a bodily cavity, duct, or vessel, as for the drainage of fluid or the administration of medication] at the level of the jugular vein and using jugular venous sampling may be a simpler alternative for localizing ACTH-secreting tumors, given the slightly higher technical demand of cannulating the petrosal sinus (that is, IPSS) recently compared the results of jugular vein sampling and IPSS in 74 patients who had surgically confirmed Cushing’s Disease and 11 patients with ectopic ACTH secretion. The specificity was 100% for both techniques, but the sensitivity of IPSS was 94% compared with 83% for jugular vein sampling. As might be expected, ACTH values and central/peripheral ratios from jugular samples are usually lower than IPSS ratios due to dilution within the jugular vein and are therefore not as reliable.










These results confirmed that the pituitary is the source of ACTH excess in my body. This means that my two pituitary tumors are releasing too much ACTH which triggers the overproduction of cortisol, which causes Cushing's disease. These test results are undeniable. Diagnostic ratios from the petrosal sinuses to the peripheral are 3 to 1. Mine were 93 to 1 and 78 to 1.




MY RESULTS FROM INFERIOR PETROSAL SINUS SAMPLING, NOVEMBER 2007

TIME-------PERIPHERAL-----RIGHT INFERIOR -----LEFT INFERIOR
--------------------------------------PETROSAL VEIN------PETROSAL VEIN

baseline---------9-----------------------124-----------------------11




3 min-----------26---------------------2020----------------------198




5 min-----------37---------------------3440----------------------199




10 min--------- 59---------------------1500-----------------------75




15 min----------62---------------------2040-----------------------99




baseline differential: peripheral to right ratio: 1 : 14 (1:2 is diagnostic)
3 min differential: peripheral to right ratio: 1 : 78 (1:3 is diagnostic)
5 min differential: peripheral to right ratio: 1 : 93 (1:3 is diagnostic)
10 min differential: peripheral to right ratio: 1 : 25 (1:3 is diagnostic)
15 min differential: peripheral to right ratio: 1 : 33 (1:3 is diagnostic

baseline differential: peripheral to left ratio: 1 : 1 (1:2 is diagnostic)
3 min differential: peripheral to right ratio: 1 : 8 (1:3 is diagnostic)
5 min differential: peripheral to right ratio: 1 : 5 (1:3 is diagnostic)
10 min differential: peripheral to right ratio: 1 : 1 (1:3 is diagnostic)
15 min differential: peripheral to right ratio: 1 : 2 (1:3 is diagnostic)

Pituitary Gland & Surgery FAQs

Where is the pituitary gland located?
The pituitary is a small, pea-sized gland located at the base of the brain that functions as "the Master Gland."




Why is the pituitary gland so important?
From its lofty position above the rest of the body it sends signals to the thyroid gland, adrenal glands, ovaries and testes, directing them to produce thyroid hormone, cortisol, estrogen, testosterone, and many more. These hormones have dramatic effects on metabolism, blood pressure, sexuality, reproduction, and other vital body functions. In addition, the pituitary gland produces growth hormone for normal development of height and prolactin for milk production.

The pituitary is the control center for the endocrine system, which controls all of the hormones produced in the body.






Is pituitary surgery the only cure for Cushing's?
YES. Researchers are currently doing clinical trials with medications, but the use of that medicine to cure Cushing's could be years and years away.


When and where will you have surgery?
I plan to have pituitary surgery in the Spring of 2009. March or April.

Lucky for me, a very skilled neurosurgeon works right here in Houston at MD Anderson Cancer Center. My husband and I consulted with him in November 2007, and he has agreed to take me on as a patient and do my surgery. People come from all over the US and Canada to have him do surgery.

Did you have a second opinion?
Yes, of course. I spoke to a San Antonio neurosurgeon as well. He is willing to do surgery, too. Due to the proximity of my friends and family, as well as the skill of the Houston surgeon, I have decided to have surgery here at home.


What's your tumor like?
This is from an email from my neurosurgeon:

"It is true that the two MRI brain scans have somewhat different readings, and they really do look different. The earlier 1.5 scan from Seattle does suggest that, as you mentioned, a 5 mm tumor is present on the right. It also suggests a separate focus on the left, but this is more subtle and you can argue over whether it is really there or not, as this spot abuts the wall of the cavernous sinus and thus is difficult to pinpoint with certainty. However, that may explain why the later scan, at higher magnet strength of 3T, showed a left lesion or tumor better. It also suggests that there is something on the right, but more subtly. Thus, both scans really do suggest both lesions but one is better at showing the left, and the other is better at showing the right. Why this is so, I cannot give a good explanation for. We might take that to suggest that there is actually a tumor of the type occasionally seen, in which a "wrap-around" effect is seen as the tumor embraces the gland from both sides with a connecting portion in the middle--thus giving the appearance of 2 tumors when really only one is there. This kind of thing can only be determined at the time of pituitary surgery. The right way to do such an operation is to go first to the point on the scan that looks suspicious for tumor, but then look at all the rest of the gland too, so as not to miss something subtle hiding somewhere else in its substance. Two separate tumors are possible, but that is pretty rare and I think most such cases actually are one tumor with a bilobed shape that looks like two on scans, but really isn't."

So, how's that for specific?

What does the pituitary look like with a tumor in it?





What is involved in pituitary surgery ?




Neurosurgeons access the pituitary gland through the nose or under the lip.
The team at Thomas Jefferson University Hospital in Philadelphia, PA use endoscopic endonasal transsphenoidal surgery. If you would like to watch the video, click here, then select Web Broadcast on the right tool bar. I did watch this video after I got my first batch of high cortisol results. I cried for the first 20 minutes out of fear. Soon, I became so intrigued by the medical advances that make such a surgery possible that I forgot about myself and focused instead on the intricacies of the surgery and skill of the surgeons.

From their Pituitary team at Thomas Jefferson University Hospital:

At Jefferson’s Center for Minimally Invasive Cranial Base Surgery and Endoscopic Neurosurgery, surgeons are now applying an advanced, “pure” endoscopic endonasal transsphenoidal surgery, which is a new approach for the removal of pituitary tumors.

This leading-edge, minimally invasive procedure uses the nose and nasal sinuses to gain access to the cranial base and brain, providing surgeons improved exposure to pituitary, sino-nasal, skull base and other intracranial tumors. Benefits of this innovative procedure include enhanced exposure leading to improved resection rates, lower incidence of neurological impairment and reduced hospital stay. In addition, the shortened recovery time often allows certain patients requiring adjuvant therapy, such as radiation and chemotherapy, to begin these treatments sooner. As a result, we are able to achieve a better patient outcome and satisfaction.

Minimally Invasive Pituitary Surgery
Using an endoscope with a camera attached, surgeons enter a patient’s nose and sinuses, allowing them to approach the tumor without any external incisions. Guided by the endoscope and enhanced computer navigation, surgeons open small holes in the base of the skull and membrane covering the brain to remove the tumor. Better visualization and access to these lesions have enabled improved resection of the tumor without causing damage to the brain and lower risk of complications and follow up surgery. This results in surgery with a shorter hospital stay, a faster recovery and improved outcomes.



The video/procedure lasts 1 hour.
http://www.or-live.com/jeffersonhospital/1346/event/webcast.cfm?

How long does it take to recovery from surgery?

Recovery from pituitary surgery is a long battle.

  • It varies from patient to patient.

  • Recovery is directly related to the length of time you've had Cushing's because of the damage that high cortisol does to the body's systems.

  • This process can take 12 to 18 months before the patient returns to ‘normal.’ This is only if further pituitary surgeries are not needed.

Once the tumor is removed from the pituitary, the body switches from producing too much cortisol to not producing enough. Cortisol supplements are taken to replace the off-kilter cortisol production. This must be taken not only on a daily and timed basis but also in certain situations: sickness and stress (good or bad). Cortisol supplements are taken after surgery to replicate the patient’s normal hormonal production. Each week, the patient reduces the amount of cortisol replacements. If the patient experiences terrible symptoms associated with adrenal insufficiency, then the patient must temporarily increase the amount of cortisol replacement hormones he/she takes and often go to the emergency room. This process varies from person to person, and it makes recovery very difficult for the patient.


Once you have surgery, are you cured?
Not necessarily, and isn’t that so unfortunate.

The pituitary is so small (less than 2 cms), and the tumors are so small, that the neurosurgeon does his best to remove all of the cells that are producing too much ACTH. In 60% of the cases, the surgeon succeeds. In 40% of the cases, he doesn’t. For some patients, several surgeries are needed to try to remove all the cells. A patient may choose to have a bilateral adrenalectomy, the removal of both adrenal glands. This surgery is performed after two pituitary surgeries fail to remove all of the tumor(s) present. The pituitary tumors secrete ACTH which stimulates the adrenals to produce cortisol. Since a surgeon does not want to remove all of the pituitary gland--as it controls many other vital hormones that the body needs--many opt for the final road to end Cushing's, which is to remove both adrenal glands aka bilateral adrenalectomy. These glands are responsible for the production of cortisol, and removing these glands is the only permanent way to end cortisol production once and for all. However, due to the important life-saving functions of cortisol, the patient must take cortisol medicine in pill form for the rest of his/her life.

However, it is not as simple as popping a pill every day. Let’s compare a Cushing’s patients post BLA with a Type I diabetic. Stress management for Cushing's patients is just as critically important as blood sugar management is for diabetics.

A diabetic must look at a plate of food, estimate the amount of carbohydrates contained therein, and take insulin for that amount of carbohydrates (which calculations are often aided by the nutritional facts on the packaging).

A Cushing's patient post BLA must take cortisol replacement medicine in response to the amount of 'sickness' or 'stress.' These events are unquantifiable and lack data on packaging. In addition, there is not a day goes by without stress or challenges of some sort. These episodes can prove challenging for a Cushing’s patient in determining how much medicine to take to offset these challenges. This makes it difficult for the Cushing’s patient to fully return to his/her lifestyle before Cushing’s.

What does a person need to watch for after pituitary surgery?

I have not had surgery yet, but I saw this summary online and thought it contained some things I have seen other Cushing's patients say after surgery.

To read Vanderbilt Medical Center Pituitary Clinic's discharge instructions for pituitary surgery patients, click here.




Where can I find out more about the pituitary gland? I'm intrigued!

One in five people have pituitary tumors.

The Pituitary Network Association has a great information about the pituitary. Check it out!


NOTES FROM THE NEUROSURGEON

Click here to read New Approaches to Managing Tumors of the Pituitary Gland Offer Patients Hope.

Click here to read The Problem of the Aggressive Pituitary Tumor.



Pituitary Tumors: A Neurosurgeon’s Approach


Great features from the Cushing's Support & Research Foundation

The Cushing's Support & Research Foundation has some very good tools to help people understand Cushing's.

In particular, I like the Faces of Cushing's powerpoint and the Do I Have Cushing's section.

Meet the Faces of Cushing's - Diagnosis, Treatment and Recovery slideshow (powerpoint slideshow)

What to Do if You Think You Have Cushing's

How long do you think you've had Cushing's?

Many people ask this question. It is a very interesting one, but one that is really difficult to answer.

I didn’t have the full slate of symptoms—to my knowledge—until 2006. However, I feel like I can trace a few milestone periods in my life and it adds a bit of insight with what I now know.

It will be at least 11 years from when I first started showing symptoms to when I got diagnosed with Cushing's disease.

The only commonality I can see when reviewing the timeline below is when I experienced great amounts of stressed. Since my body was already producing excessive amounts of cortisol, any drop of additional stress caused my cups to runneth over. Weight gain was my most obvious symptom.


Here are the timeline tidbits I can piece together:

1996 to 1999 – gained weight unexpectedly in grad school and during first big jobs. 5-10 pounds per year.

2000 – reached highest weight to date. Stress at job, moving back home to Houston, career change/stress.

2001 – completed a marathon in Rome, Italy. Success in losing 20 pounds before high school reunion.

2001 to 2002 – gained weight despite efforts.

June 2002 to May 2003 – period of weight loss. Atlkins diet worked well for me, as I embraced the carb-is-my-enemy mantra.

August 2003 – bridesmaid in friend Nancy’s wedding. I was measured for dress in March and by June/July, the dress was too tight and had to be let out. Gained 15 pounds from May to August despite earnest efforts to lose.

2004 – First paid political campaign job. Very stressful. Worked two full time jobs and ran a local political campaign’s volunteer activities. Gained weight.

Summer 2004 – buffalo hump pain begins. Neck and back pain cause me to call into work because I can’t move or get up. This pain continues to this day.

June 2005 – dating husband-to-be Jonathan. When I discuss weight gain, he notes that I have very good eating habits, so he can’t figure it out either. I go to internist who runs tests and prescribes Thyrolar for subclinical hypothyroidism. Symptoms subsist but soon return.

December 2005 – started new political job. Very stressful. Started missing my menstrual periods for 5 cycles until May 2006.

Summer/Fall 2006 – unexpected weight gain. Many public appearances. My suit jackets no longer closed, and I worried about my clothes prior to every event I attended. Cried frequently behind closed doors, at least bimonthly. Depression and anxiety were high.

November 2006 – Political campaigns end. Quit job, bought first home, and move with husband-to-be to San Antonio for his job. Unpack, settle in, start planning April 2007 wedding. Prepare for holiday season. Anxiety remains high despite decompressing environment. More crying, more depression, inability to focus, concentrate. Muscle aches become more pronounced in new two-story home. Started missing my menstrual periods again (November 2006 to April 2007).

December 2006 – Postpone wedding until October 2007, thinking that more time will relieve stress. Symptoms continue.

March 2007 – Visit to new PCP in San Antonio; I explain symptoms; He runs tests for thyroid.

March 28, 2007 – Doctor’s office calls with normal thyroid tests. I cried. I knew something was wrong. I took to the internet and within one hour of searching, I first read about Cushing's. I diagnosed myself that day.
05/09/07---first endo appt about Cushing's (he was totally dismissive, but I squeezed him for lab orders)

June 28, 2007 – saw specialist out-of-state; first high test results diagnostic of cushing's (MN cortisol serums 6.7, 7.0, 7.5; ACTH 78, 105; MN salivary 4.1, 5.4)

November 2, 2007 – IPSS, showed diagnostic results at baseline of 14 to 1 (diagnostic: 2 to 1); timed intervals were diagnostic: 93 to 1, 78 to 1 (stimmed to 3,440!)

December 20, 2007 – diagnosed with Cushing's disease. Declined pituitary surgery for 12/27/07 to try for 1st baby.

December 31, 2007 – eloped

Thursday, June 5, 2008

Pregnancy and Cushing's

12/31/08-----eloped

01/06/08-----pregnant :) thrilled. tired.

06/11/08-----6 months pregnant. Feeling great!

10/01/08-----due date, but doctor said it is more likely mid September (go Virgos!)




Jonathan and I are happy to announce that we are expecting a baby girl this fall!






Photos of mama, taken Memorial Day weekend 2008





And if you've read along so far, you must have noticed that nothing with Cushing's is easy. Well, the medical community believes that pregnancy with Cushing's is impossible at the most, improbable in the least.

We are happy to have defied the odds.

Many women who suspect they may have Cushing's have expressed keen interest in my sharing what we learned from speaking to all of the specialists. I share my thoughts here to benefit these women and their families. For this reason, I outline our decision process for postponing pituitary surgery to try for this baby below.

This is another way that patients with Cyclical Cushing's differ from those with Florid, or full blown, Cushing's.


Why I chose to become pregnant before surgery

When we decided to try to become pregnant at the end of 2007, it was quite a controversial decision. Every person seemed to fall on one of two sides: have a baby or go for pituitary surgery. Jonathan and I had to decide what was right for us, what we could live with. We are overjoyed with our decision.

**********

December 22, 2007

Jonathan and I visited with my San Antonio neurosurgeon and endocrinologist this week. My endo said that I have very early Cushing's disease. On a scale of 1 to 10, with 10 being full blown Cushing's, she says I am a 3. Luckily, I do not suffer from the long-term damage of high cortisol such as diabetes, osteoporosis, kidney stones, or unusual infections. We really feel like we caught this early, and unlike every other disease you heard of before, apparently, it is not so good to catch Cushing's disease early. Doctors don't know what to do with you.

I have had two endocrinologists in the last month tell me that Cushing's disease is the most difficult diagnosis to make in the field of endocrinology, if not all of medicine. Leave it to me to be so extraordinary.

My neurosurgeon has an opening next Thursday, 12/27 and he is ready to perform surgery. I would be in the hospital for 2-5 days for the pituitary surgery. He would access the pituitary, located behind the eye sockets, through my nose. He must first drill a small hole in the bony casing around the pituitary to gain access to the gland.

There it is. Surgery. Just dangling out there for me to reach out and grab.

However, I just can't do it now. Jonathan and I have discussed this topic ad infinitum over the past few months. We want to try to have a baby first, before pituitary surgery.

No doctor can make any guarantees that there will not be damage to my pituitary gland after surgery. No doctor can guarantee that we will be able to have a baby naturally after surgery. The pituitary gland makes luteinizing hormone (LH) and follicle-stimulating hormone (FSH), both critical hormones that lead to ovulation. No ovulation, no baby. At least not one for thousands of dollars. After all this medical treatment, we will not have a lot of dollars left over.

So, we feel that we want to try to have a baby on our own now, while I am still early with this disease. I have met with a high risk obstetrician and reproductive endocrinologist who can help me. I have a lot of faith in these doctors, and I just feel like it will all work out for the best.

Yes, there are dangers to my health: high blood pressure, gestational diabetes, pre-term delivery, pre-eclampsia or high blood pressure, swelling. I may have to go on bed rest. Do these sound familiar? I bet you know many women who have gone on to successful pregnancies with these issues. I hope to be one of them too.

My doctors feel that with medication that is safe during pregnancy, we can handle any of the symptoms that Cushing's caused in order to reduce my risks to that of any other 35 year old woman. We can only monitor my progress and see how I do. Some people have normal pregnancies and face problems at delivery. Some people have rougher pregnancies but smoother deliveries. NO ONE KNOWS WHAT WILL HAPPEN.

There is not enough research to say what to do one way or the other. This disease is so rare that the answers I seek do not exist. Cushing’s disease and pregnancy is so rare that an extensive review of the medical literature brings up articles containing 20 subjects, 10 subjects, 4 subjects, and even a case study of one woman. These pregnancies had varying success. All I knew is that there was not enough data, not enough participants to know what would happen. My neuroendocrinologist reminded me anyway that when these articles discuss pregnancy, they are talking about florid Cushing’s patients, not cyclical Cushing’s patients. So, even less data out there.

If I were to go into surgery now, I would need someone to monitor me 24-7 for several months, likely 2-3 minimum. Someone must watch me as my hormones regulate and normalize. This can be a very dangerous time. There is no one who can do that for me now, as we live far away from Houston, and people have other obligations. They can not be gone that long from their lives to help me with mine. In addition, it is not likely I will be cured with one surgery. I have been watching Cushing’s patients get surgery all year long, and I know what they go through by what they post. Cyclical Cushing’s patients often need two pituitary surgeries—6 to 12 months apart—and then possibly a bilateral adrenalectomy several months after that. By the time I am finished with Cushing’s surgeries, it could be 2 to 3 years from now. I will be 38. While there are hormones they can inject me with to help with ovulation, my eggs will be older, and baby will be at risk for genetic defects and chromosomal abnormalities. Plus it is harder for an older woman to carry a baby, even if many do so successfully. It is riskier. If it works, that is great. That is a good option for a second or third child. If it doesn’t, everyone who counseled me against the baby will go on with their lives (usually with babies of their own) and they will forget about me and my loss. Well, I feel strongly that I need to take a calculated risk now and see what we can do. Many Cushing’s patients on the boards admit that they have had Cushing’s for a very long time (5-15 years in most cases), and many have had successful pregnancies. I am confident that I can, too.

I will have to wait 6 months after delivery for my pituitary to stop its swelling from pregnancy--this happens to all pregnant women. Then I can have another pituitary MRI and then pituitary surgery. That means it will be another 15 months before surgery can happen, at the earliest. It is a little scary to think that it won't be before March 2009, but I will go forward hopefully with a baby in my arms. However, all I can say is that it is really what I feel I should do, and I feel driven by a very strong voice inside me that says I should go ahead and try. I can see all of it very clearly in my mind, and in my mind, it is all going to work out fine.

I thank you all for visiting this page and checking in on me. It warms my heart to know that so many are watching out for me. I will keep you updated.

Cushie Gracie in Ohio writes:
“Congrats on the decision to try again! You never know until you try. This way, you won't have regrets later, thinking you should have tried."

Thanks Gracie. That's the most important part of this decision, and you understood that point without me having to make it. At any time, I can turn and go to surgery. ANY TIME. I am cleared by two neurosurgeons, and they are ready to go any time I am ready. I can go next Thursday if I want. However, I just feel that since my Cushing’s is so early, I have time to try. If it doesn't work, then at least I tried, and at least I have no regrets. I will not wonder what could have been.

I can go to pituitary surgery any time I want. However, the reverse is not true.

If I choose surgery first, then I will never have an untouched pristine pituitary gland again. That has has consequences for my fertility. I do not want to spend the next 12-24 months after surgery #1 (maybe 2 and 3) wondering about my fertility. I don't want to be the woman I know I will become in that scenario – sullen, remorseful, guilty, heart broken. It is just really best for me to try and see. Also, adoption is not a viable option, as most agencies do not allow parents adopt if they have had major surgery in the past 10 years.

I have some friends on an email list and someone told them about my decision. Someone expressed concern about my decision saying I already had so much on my plate that I cancelled the wedding. Another person (both male) agreed. Granted, neither of these people have been following my case or reading my carepage regularly, where I explain everything about what I am doing, how I am approaching it, how many doctors I have seen to decide this or to get to where we are now. My response: "When you have a brain tumor, you get to decide. Until then, I get to."

I want people to give me credit for being the type of person who leaves no stone unturned, who is sure of her decisions only after hours and days of contemplation and research, or even a little bit of recognition that every decision I made about this disease so far has been right on the money when others doubted me: setting up proper insurance before my first endocrinologist, traveling to Seattle on a gut feeling in pursuit of high numbers, working doctors in three cities against each other and getting every lab order I needed to get a diagnosis in 9 months, working to understand everything there is to know about pregnancy and Cushing's and high cortisol, and wading through so many medical journal articles that I could write them myself.

Am I perturbed when people then question my judgement? You bet. I am upset by it for not getting the credit I deserve, but I must get over that. How do I do that exactly?!

Maybe I will train my mind that nothing in life is for sure. Life gives no certainly to anyone—sick or not. People often go through life oblivious to this uncertainty and denying what could happen at any turn.

Instead, it is best to think that we all move through life based on a set of calculated risks in an attempt to get as much as we want from this life that we can reasonably attain. Yes, I like that much better. I am doing just that.

People do not have to agree, and they can go on and make their own decisions. Perhaps I will hide in the background and pop up at that person’s time of trouble and uncertainty and tell them their decision is bad so they can worry over their difficult decision even more than they already are. No,I won’t. Even though I can, I never would. I will use my powers for good, not evil. Even for people who don’t extend that to me.

As of now, I am releasing this negativity from people who have never studied Cushing's, never sent me a card, never given me a call, much less sent over a casserole. I am releasing other people’s opinions into the air like a balloon that carries away my anxiety and fear of all the uncertainty we will face. Yes, today, I release all of that. Thanks to all of you for reading. Love, Melissa


Cushie Jeremie in North Carolina writes in.
She was diagnosed with Cushing's disease in August 2007, and she had her first pituitary surgery on September 6, 2007. She has two boys, Braden 6 and Cooper 3. She and I have become good friends. I received this email from her this morning.

"Melissa, I feel for you. At my follow-up appointment, the Cushing's doctor just told me yesterday that a part of my posterior (fertility area) pituitary was removed during surgery, and I may have to do fancy fertility stuff to get pregnant. She said I should be having a menstrual cycle by now (3 months post op), and the fact that I'm not means that I may have lost function permanantly. She said I may never get back this part of my pituitary function.

If we were trying for our first child, I would be freaking out. If I were in your shoes, I would do the same thing. Good choice not to have surgery and to try for a baby first! It is still early in Cushing's for you.

You know, I am confident that I had Cushing's when I had Cooper, my second child. I didn't lose any weight after birth. I gained weight in the hospital. Everything went haywire from there, and I started getting all the symptoms that I now know are due to Cushing's. That was 3.5 years ago and here I am, three months post op. You know that there are lots of women on the boards who just know they had Cushing's while pregnant. Many went on to successful pregnancies.

We are thinking of trying for a third. I will take your advice and work with a reproductive endocrinologist for help."

~Cushie Jeremie

Dealing with the Grief of Cushing's

** After writing this post, I found a wonderful collection of articles regarding Coping with Cushing's. I am a work-in-progress, and this gives me a good path to get there.

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

I am very sensitive to anyone thinking I am pessimistic about my situation. Understand that Cushing's disease causes depression and anxiety which leads isolation and muddled-thinking (I'm sure I've posted about somewhere on this blog).

I am committed to fighting and getting through this, for both myself, my husband, and my family.

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

Sometimes I'm amazed when I look in the mirror and wonder who that person is. Even as I try very hard to be forgiving and accepting of my condition, it is difficult when the main symptom of weight gain is so easily criticized by our society.

I have never been bound by what I could not do before.
Now, with this disease, I feel I am.
I am uncomfortable in this skin.
It doesn't fit.

I do not like saying I can't do something on my own.
I do not like saying I need help.
I do not like always wondering if I can.

I miss knowing that I always could.

I try hard not to engage in negative thinking, and most days, I do not. On some days, I feel like my life is in a holding pattern. I am not the same person I once was. I can’t do what I used to be able to do. Some days, I find it difficult to ignore the facts.

1) I can't think like I used to. I am easily confused and overwhelmed.

2) I can't do like I used to. My body aches, I have no stamina, and yet life piles lots of work on me every day. Despite my illness, I feel compelled to keep up with it all.

3) I can't work like I used to. I have no way of knowing how I will feel from day to day. I can't stand longer than 20 to 30 minutes at a time. I can't walk great distances any more. I feel like what's left of a working mind is trapped in a unable body. I feel like my work was interrupted, and I miss feeling purpose in my day. I miss feeling like I am a part of something bigger than me, and I miss my work in politics a great deal.

4) I can't be upbeat like I used to. Pituitary tumors cause depression, isolation, and anxiety. This is when the above problems seem so insurmountable to me. I cry a lot these days.





I have been living with this disease long enough to know to just wait it out. A new day will dawn, and my outlook on life will again turn more favorable.

I don't really like to look behind me too long, so I am going to try to feel the feelings and move on. I feel very protective of myself right now.

Upon quick thought, I am reminded many very good indicators that my life is still quite good:

  • I have a husband who loves me and promises to stay at my side. I couldn't ask for anything more.
  • We are expecting our first child, and being a mother has always been important to me.
  • We recently returned home to Houston to be closer to family. I am happy to have them so near to me.

And on days when I feel like my old self, I prefer to think of this disease as building something in myself that needed to happen…

  • perhaps more self-awareness
  • perhaps more appreciation
  • perhaps more compassion

I hope to get back to a place where I feel like I can accomplish anything I put my mind to. In the mean time, I know I must do my best at the following things:

  • I must try to make the most of my situation.
  • I must always try to live in the present.
  • I have to believe that my life has a greater purpose than what was previously revealed to me.
  • I must follow this path to see where it takes me.
  • I must remind myself that no one gets any guarantees in this life—health- or otherwise.
  • I must continue to build a life that fulfills me while doing good for my fellow citizens of the planet.

I know there are people who have less and need much more.
I have spent my adult life serving as an advocate for them.

However, in order to tell of my triumphs with Cushing's, I must also honestly disclose my struggles. I have no intention of my story ending in a low point. I plan on winning this war and helping others along the way.

Even on my bad days, I know what is possible for me. I know what I have vowed to do.

Even on bad days, I remain undeterred and committed to bringing more awareness to the plight of patients with Cushing's disease.

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

HOW ARE YOU FEELING THESE DAYS?

I am feeling OK. I am living with my symptoms.

While I spend good days desperately wanting to spend time with old friends, I am quickly reminded on a bad day why my body and mind just don't agree with my sentiment. I end up having to cancel a lot. I end up looking and feeling like a flake. I hate that. So, I have just learned not to make too many plans.

These feelings are also explained by my Cushing's and pituitary tumor. I have low IGF-1 on at least five tests in the past year. What does that mean?

In adults, abnormally low levels of GH and/or IGF-1 may cause subtle, nonspecific symptoms such as:

· Decreased bone density
· Fatigue
· Adverse lipid changes
· Reduced exercise tolerance.

My low IGF-1 test results suggest that the symptoms in the below survey are impacting me, too. In my case, my pituitary tumors that are secreting ACTH are also disrupting the normal hormone production patterns of the pituitary. Growth hormone, as I said earlier, is just one of the pituitary hormones.

Growth hormone deficiency in Adults

  • I have to struggle to finish things
  • I feel like I've got to sleep during the day
  • I feel lonely even when I am with other people
  • I have to read things several times before they sink in
  • It is hard for me to make friends
  • It takes a lot of effort for me to do even the simplest jobs
  • I have trouble controlling my emotions
  • I often lose my train of thought
  • I lack confidence
  • I've got to push myself to do things
  • I often feel very tense
  • I feel like I let people down
  • I find it hard to mix with people
  • I feel exhausted even when I haven't done anything
  • There are times when I feel very low
  • I avoid any responsibilities
  • I avoid socializing with people I don't know well
  • I feel like I'm a burden
  • I often forget what people say to me
  • I find it hard to plan ahead
  • I am easily irritated by people
  • I often feel too tired to do the things I have to do
  • I have to force myself to do everything that has to be done
  • I often have to force myself to stay awake
  • I have trouble remembering things

Many of you may read this list and say, “That doesn’t sound like the Melissa I know at all.”

Two years ago, I would totally agree.

Now—and for a while now—it all is true for me.

However, I know, that this is not the person I am, just the person I am with Cushing’s disease.

Some days it is hard to tell where one Melissa starts and the other one ends. Those days are the toughest, because in my mind, I think like you… that I am fine. Yet this disease quickly reminds me of my limitations and I remember that the other Melissa seems world’s away now.

At the end of it all, I know that this is my new path in life. And I look forward to helping people along the way, and advocating for better healthcare and Cushing's awareness when I am well again.

Then you will see that Melissa that many of you already know.
That's when I will see more of that Melissa that I ever knew was possible!

Wednesday, June 4, 2008

Before and After Photos

Pulling together this timeline of photographs was the most difficult part of being sick for me. It's the toughest even while considering everything I have gone through to get diagnosed:
  • all the midnight and 4 am blood draws

  • the PICC line that aggravated by arm veins and made my arm go numb

  • lying on my bad back, being still in the MRI tubes for over an hour at a time, twice

  • having the IPSS while wide awake

  • all those doctors appointments where I would have to start telling my story from scratch in hope that this time, someone would believe me
  • all the uncomfortable moments when I felt people didn't believe that I was really sick (just fat).
Gathering my photos and posting them reminds me of a life interrrupted.

It reminds me of a life that was filled with insecurity and self-hatred over my body.

Even though I am smiling in these photographs--and probably was smiling when I saw friends and family, I know how much I have struggled with my weight since I was a teenager... How much I worked and worried trying to look 'presentable' and 'good enough' for every event I ever had to attend.
I'd gain weight and not really know why, but I continued to act like it didn't bother me. It bothered me.

As a feminist, I hated these negative thoughts. Even so, I could not stop them. I knew better than to think like that, and my friends never really knew that was happening in my head. These photos symbolized years of being insecure and wondering if being overweight meant being unlovable.
I endured the emotions that accompanied this project because I know it would help depict my struggles with weight in an undeniable way, and that with the right medical team, it would make a difference.
Now, despite my size, I know I didn't do this to myself.

I didn't let myself go.

I wasn't lazy.

I didn't eat too much.

More importantly, I trusted my instincts and I didn't give up.

I have much more forgiveness for myself than I could have ever found otherwise. I attribute that to my Cushing's diagnosis. And for that, I am thankful to this journey.

~Cushie Melissa

P.S. And for those of you going through the Cushing's diagnosis battle yourself, please know that I know how heartbreaking it is to see your former selves and compare them to your current self.
Do it anyway. You may be on your way to changing your life and finally feeling better.

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

1994
1996

















1999 (face gets fuller)




2000 (my highest weight up to that point)







2003  (after Atkins diet success)

2005  (fuller face, weight gain,
irregular periods, anxiety)

2006
truncal obesity






Feb 2007

April 2007 -  fuller face


May 2007







2001                   vs.                    2008
Fuller face. Swollen eyes. Wider neck. Visible fat pads.

Tips to Steady your Feet & Get Diagnosed Quickly

I wrote the following batch of tips in an attempt to share what I have learned while fighting this disease and fighting for my life. I hope it is helpful to you as it has been helpful to me.

Above all else, remember that you must take the bull by the horns and get yourself better.

******

HOW CAN DOCTORS BE SO CLUELESS ABOUT CUSHING'S?
How can doctors and the medical community treat you, a patient, with such dismissiveness? Simple. They have no idea what we are dealing with.

Cushing's shows up in a few paragraphs in one 'rare diseases' chapter in one text book in their entire medical curriculum. The one thing they remember is that it is rare, and if it is rare, then you can't possibly have it. Ludicrous, but true in their eyes. I know too many Cushing's patients who have heard these words to dismiss these doctors' dismissiveness.

My endocrinologist says that Cushing's is the most difficult to diagnose in her field, maybe even in all of medicine. If you have this disease, your heart may have just sunk. Get out your fishing net and pick it back up. Take this to heart in the good way... now that you know this, you can take control of your path to diagnosis, and you can steer the way. Don't let anything stand in your way.


HOW CAN MY FRIENDS AND FAMILY--EVEN MY SIGNIFICANT OTHER--BE SO UNSUPPORTIVE ABOUT MY HAVING CUSHING'S?

It's not really their fault. Cushing's is unlike any disease anyone has ever seen before. In most cases, people have never heard of Cushing's. As a result, most are highly suspicious of Cushing's patients. There is no reference point, no context. I know that feeling... the one that gnaws at your gut because it seems that no one believes you... it's that silence and lack of question-asking when you finish your talk about it. I know exactly what you mean. We all feel that. Despite their love or affection for you, people think you are just making excuses for being overweight. They think you are a hypochondriac who is grasping at straws because you fear the treadmill, low-fat milk, and fruits and vegetables!

This society knows of only two ways to gain weight: eat too much and avoid exercise. The media, even in an attempt to be helpful, urges us to clean up our diets and exercise at every turn, proclaiming It's fun! It's easy! Few weight loss segments ever mention the biological reasons for obesity. If you don't believe me, just watch for yourself. Leave me a comment with your observations. I know I am right!

This is the hard truth.

Take everything you thought you knew about illness:



  • doctors know everything and are willing to help you;
  • catching a disease early is good;
  • getting better is easy;
  • care and love comes to sick people by way of casseroles and pot pies
and throw it out the window.

You aren't gonna get it with this disease, so don't expect it. Painful realization, but it is true. I recently decided not to fill my already stressed days with other's disbelief and lack of support. I have better things to do. I have to get myself well. You do, too.

However, I have come up with ways to try to discuss this disease with my family and friends. This website is one way. Another way is to tell your story through a blog or carepage. Although they may not understand, it is imperative that each of us reach out into our circle of friends and family in order to bring awareness to this disease. I have no doubt that we will save lives this way.


LEARN A BIG LESSON EARLY.
Be proactive no matter what. For every day you waste, you are sick another two weeks due to unexpected delays in the medical community: scheduling, weekends, test run time, doctor vacations, rescheduled appts, etc. Nobody--no doctor--cares more for you than you. Those docs are not talking about your case over dinner with their family, and they are not on the phone with their doctor friends running through the long lists of possible diagnoses in a desperate hope to cure you. Nope. They forget you the second you leave the little room and then think about you briefly when they see your lab results. They only faintly remember you when they see you in that same little room two to three weeks later for your follow up appointment. Don't treat these people with more reverence than they deserve, and they only deserve it when they act like a compassionate, medically curious, and proactive doctor that you need and deserve.


UNDERSTAND YOUR INSURANCE COVERAGE
Do you have a HMO where you need a referral to go to a new doctor or do you have a PPO where you can go to any doctor you want?

If you have a PPO, call the doctor to see if s/he is an IN NETWORK PROVIDER for your insurance. Also, call your insurance company to ensure that the doctor is an IN NETWORK PROVIDER. Don't rely on the internet site listing providers. I always made sure I called in to ensure that my file would reflect that I called in and asked. If they were in network, my account was noted, and I had more ammunition in case they told me later that the doc was not in network after all.

If you have an HMO, call to set up an appointment with your primary care doctor and have the name of the endocrinologist or Cushing’s specialist in hand so you can get the referral (see below on how to get ready for the doctor’s appointment).


IF YOU HAVE AN HMO, SWITCH TO A PPO
I know this requires a higher monthly premium. I know we Cushies are already pressed for money with all the traveling we do for specialized care. However, I must tell that having a PPO was a major reason why I got diagnosed so quickly. I guided my own care. I chose doctors, I set up appointments, and I powered through.



  • Had I had any one doctor serve as a gate keeper that made decision regarding my health, I would have been toast.

  • Had I had to wait for said gate keeper's staff to look up referrals and give me papers and get through all that hassle, I would have been toast.
Do yourself a favor: pay up and get a PPO. You are worth it. What's more important than your health?

If you have an HMO, know when your company or your spouse's company open enrollment period is. Mark it on your calendar. You can change from an HMO to PPO usually only at this time. Call your HR representative, and he/she can guide you through the process.


DO THINGS CONCURRENTLY!
Getting a diagnosis of Cushing's is a hurry-up-and-wait game. For every day you waste, you will be sick for two weeks longer. Stay active. Get moving. Get better.

If you are stuck waiting, ask yourself, "What else can I do to move this along? What else can I be doing in the mean time?"

Schedule all the doctors appointments NOW.

If you have an HMO, schedule an appointment with that office, then schedule an appt with the specialist for shortly thereafter. That way, when you get the referral in hand, you will not have to wait very long for the next appointment. Some offices don’t like to do it without a referral, but if you ask them to set an appointment now, you promise to fax the referral as soon as possible. Then, you get the appointment… and then get the referral to them when you can. Doesn’t matter after that, because you already have your position in line… an appointment.As a general rule, make more appointments than you need, and then cancel if you find you don't need them. This will keep you from spending weeks and months waiting for doctors' appointments unnecessarily. It can take up to three months for new patient appointments with endocrinologists. Cut down your wait time.


GET YOURSELF TO A SPECIALIST
If you drove a Bentley, would you take it in for repairs to a gas station mechanic? Of course not. You would take that car to someone who understands it, respects it. Cushing's is very rarely diagnosed, and doctors don't know what to do. Even if they act like they do. Some of us can lead our docs around for a while, squeezing lab orders out when we can, but eventually, most of us peel off and see Cushing's specialists.



CYCLICAL CUSHING'SRemember I mentioned that nothing about this disease is easy? Well, here is another reason why. Not all of us show our symptoms of high cortisol levels all the time. That's right. We can have cycles of high and low cortisol levels.
Here is an excerpt from a good article about cyclical Cushing's.

*Dennis A. Velez, M.D., Marc R. Mayberg, M.D., & William H Ludlam, M.D., PhD. "Cyclic Cushing syndrome: definitions and treatment implications." Neurosurg Focus 23 (3):E4, 2007.
*Authors from Seattle Neuroendocrine Program, Swedish Neuroscience Institute, Seattle Washington.

Endogenous Cushing syndrome (CS) results from hypercortisolemia caused by excess adrenocorticotropic hormone production in a pituitary adenoma or ectopic tumor, or by an adrenal tumor that directly produces excess cortisol. The diagnosis can usually be ascertained with a reasonable degree of certainty based on clinical and laboratory findings of hypercortisolism. There are patients, however, in whom the production of excess cortisol exhibits a cyclic or intermittent pattern, and, as a result, the clinical symptoms may be quite complex and varied. In these patients the hypothalamic-pituitary-adrenal axis may be normal between cycles.
The tests results used to document episodes of hypercortisolemia in cyclic Cushing's Syndrome will be similar to those of traditional Cushing's Syndrome except one will observe periodic episodes of “normal” test results. The duration of the cycles has been described as being 12 hours to 86 days. This range is in contrast to the condition referred to as intermittent Cushing's Syndrome, in which the cycle of cortisol production is irregular and ranges from 10 episodes of relapse in 3 months to two episodes of exacerbation in 5 years.
So, how does having Intermittent/Cyclical Cushing's complicate diagnosis?
1) You must figure out when your body is in a cortisol high and only test then. See more below.
2) If doctors know very little about Cushing's because it is rare, they certainly have never heard of cyclical Cushing's. It is completely outside their scope of knowledge. Therefore, if you happen upon a doctor who will test your for Cushing's, let's hope that your test results are high from the beginning. If not, if you get normal test results on your first batch of tests because you are 'in a normal cortisol cycle,' well, you are toast. They will dismiss you, and you may spend months to years, watching your health deteriorate as you face more limitations and thinking that there is really nothing wrong with you besides that piece of birthday cake you ate and all the times you only walked for 25 minutes instead of an hour. DON'T WORRY... it is not your fault!! There is hope!

CUSHING'S PATIENTS DO ALL LOOK THE SAME OR HAVE SAME SYMPTOMS.

There is a classic, textbook look to Cushing's patients. Not all of us fit that bill. Some docs say that some patients don't look "Cushingoid"... nice name, right? Don't let your doctor pigeon hole you if you don't have all of the symptoms listed below.

These symptoms are typically associated with Cushing's.
From the http://www.mayoclinic.com/:
  • Weight gain, particularly around your midsection and upper back
  • (often sudden; also the inability to lose weight despite earnest efforts in diet and exercise)

  • Fatigue

  • Muscle weakness

  • Rounding of your face (moon face)

  • Facial flushing

  • Fatty pad or hump between your shoulders (buffalo hump)

  • Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms

  • Thin and fragile skin that bruises easily

  • Slow healing of cuts, insect bites and infections

  • Depression, anxiety and irritability

  • Thicker or more visible body and facial hair (hirsutism)

  • Acne

  • Irregular or absent menstrual periods in females

  • Erectile dysfunction in males

  • High blood pressure
While many Cushing's patients have these symptoms, not ALL Cushing's have these symptoms. Many of these reflect Cushing's at full throttle or Cushing's Stage 4 (to use cancer terms). If you suspect you have Cushing's 'early', even after years of uncertainty and silent suffering, don't let the fact that you don't have these symptoms derail you. You may soon get them. I hope, for you, that you will get your diagnosis and surgery before you get them all.

CYCLICAL CUSHING'S: TEST WHEN YOU ARE HIGH
Everyone's symptoms of high cortisol times and low cortisol times differ.
My odd-assortment of symptoms during a cortisol high include:
  1. acid reflux (I NEVER had this before June of 2007)
  2. pimples in the hair line and chin, sometimes
  3. feeling normal/no muscle or joint pain
  4. soreness/pain in my buffalo hump
  5. usually on my period
  6. fast facial hair growth, mostly on my eye brows
Every Cushing's patient experiences something different, likely because we are all at various stages of Cushing's.
After years of clinical observation, the Cushing's specialist I saw instructed me to watch for these typical signs of high cortisol:
1) redness in my face cheeks
2) red stretch marks on my abdomen
3) excessive hair growth on the face
4) acid reflux
5) rapid weight gain
I do not have redness in the cheeks (I am half Filipino, so it has a lot of brown to break through!) or a lot of facial hair (only lip and eyebrows). My limbs are not super skinny. I don't have diabetes, but I was only recently diagnosed within insulin resistance in 12/07. My moon face only started to come on in the past 2 months (I feel I have had Cushing's at least since 1995, maybe since the onset of my menses). Yet I still have high cortisol at midnight, ACTH results at 4 am, and 5mm and 3mm tumors on my pituitary. See... we are all different! You could line up all of us known Cushies and our constellation of symptoms would all be different. Plus, our symptom set when we received high cortisol test results would also vary from person to person. It's crazy, huh?

Cushies are like snowflakes... none of us are exactly the same.
  1. Some people have higher biochemical data/lab values than me, but they don't have a tumor showing.
  2. Some have a pituitary tumor showing on their MRI but haven't had diagnostic results yet.
It is crazy to detect what each of us *should* have or will have, because we are all different. To get an understanding of highs and lows, please visit KateG's post about cyclical Cushies for help.


RESPECT THE MASTER: UNDERSTANDING THE PITUITARY GLAND
The pituitary is the master gland. It secretes nine hormones vital for every day functions--7 anterior (front) and 2 posterior (back). If you have a pituitary tumor, it can affect the production of these other hormones. Since TSH or thyroid stimulating hormone is one of these 9 hormones, many of us have thyroid problems. In fact, I have low thyroid, low FSH, low LH, low IGF-1, normal prolactin, uber high ACTH. I finally saw a doctor for low thyroid 3 years ago, and this year I finally realized that the meds were not working and I felt worse. That led me to find Cushing's online.I just search Google and found a FANTASTIC pituitary explanation.

Click here to see pretty cool description of pituitary hormones.

Here is another great little diagram of the pituitary, courtesy of OHSU Pituitary Unit. http://www.ohsupituitary.com/patients/pitAnatomy.html

Here are some Doctor-Patient Discussions about Pituitary Disorders from the great folks at the OHSU Pituitary Unit. They have a section on Cushing's. http://www.ohsupituitary.com/patients/video.asp


REQUEST THESE TESTS TO DIAGNOSE CUSHING’S
For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

1) copies of all of your lab results to date;

2) four lab orders for each of the following tests, to test as you see fit, according to your symptoms:

  • 24 hour urinary free cortisol (UFCs): normal range is 0-50. diagnostic is over 50.
  • midnight salivary cortisol (from your spit): normal range is 0-0.17. diagnostic is 5 and over.
  • midnight cortisol serum(from blood draw): normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.
  • cortisol serum tests (from blood draw). lab samples must be taken at 8 am and/or 4 pm. If they are not taken at this time, the results do not count.
  • random ACTH plasma (from blood draw) (many Cushing's patients see very high levels at 4 am, don't know why): normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on! These lab samples must be handled very carefully to get an accurate reading. I will post a link to the proper handling when I can find one.

In addition, there are many tests that you can ask a doctor to order for an overall hormone assessment.

These tests usually include:

  • thyroid panel (TSH, T4, T3)
  • pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary)
  • hormone panel (estradiol, testerosterone, DHEA, etc)
  • vitamin B12, vitamin D, ferritin — many Cushies have very low levels of these three, and if ferritin is low, it explains hair loss.

Oregon Health and Science Center in Portland, OR makes these suggestions when working with your doctors:
http://www.ohsupituitary.com/pros/workup.pdf

Others may suggest that you ask for other tests. I didn’t feel comfortable asking for specialized tests before I got the basics ones first. I felt that if I had the first battery of tests done and something came back abnormal, then I would ask for others. This approach worked well for me.


UNDERSTAND THE TESTS YOU ARE REQUESTING
Do a search on the tests above PRIOR to your doctor's appointment. Understand what you are asking for. This site will give you the quick and dirty. Click here to see great website called Labtestsonline.

Accept this fact: You will know more about Cushing's than your doctors.

Educate yourself about the nuances of Cushing's. You will need to be the new expert on Cushing's. Dig in and arm yourself with info. Don't take no for an answer. Your life depends on it.

  • Start researching medical journals and print articles to share with your doctor. Check out this link that our own Robin/staticnrg put together for us: Click here for medical articles.
  • Take a look at this whole journal edition dedicated to Cushing's! These 15 articles are free to download.
    Neurosurgical Focus, September 2007, Volume 23, Number 3.
  • Read the Cushing's Help and Support boards voraciously and understand cyclical cushing's, general symptoms of highs and lows (varies by person, but there are generalities).
  • Read people's signatures below their posts. You will learn so much from this simple act. It has helped me tremendously. Look at timelines. Look at test results... what do people get excited over? WHY? Click here to see all the signatures in one place.
  • I have learned all I know from the wonderful people on the message boards. I am proud to that is A LOT!

***********
YOU MUST BE PREPARED FOR EVERY DOCTOR'S APPOINTMENT.
Don't get dismissed by your doctor. If you get yourself ready at the beginning of this journey, you will find yourself only updating your information and reprinting it from the computer. This will save you from having to remember all the little things with this fragile and confused Cushie brain of ours.
Think of this as a courtroom.
Your diagnosis is the case to be tried.
The doctor is the prosecuting attorney and the judge.
You are the defending attorney as well as the defendant.
Your friends and family serve as the jury.
If you lose, do you get the death penalty...?
You must be ready. You must know your history, your case, your symptoms, your facts, your lab results, your timeline. If you don't know or can't understand your case history--and you lived it--how can you expect a doctor in 15 minutes to understand?
  • Get a big Big BIG three ring binder and file all your paperwork together. Memorize your numbers and lab results. They are your new multiplication tables. I put my lab results in order by date, with the most recent on top. This is the simplest because some doctors order tests that cross many categories, so I can't put them behind tabs like that.
  • I also ask the doc's assistant for a copy of the lab order before I leave the check-out desk at the office. I have never been denied. I go to the lab and get the blood drawn. I take my copy of the lab order home and look up the tests that were ordered on http://labtestsonline.org/, so that I have time to research these tests. I am always ready to discuss results with my doctor at the next appointment. I can guide the doc to the next step, in case he doesn't know (this is unfortunately more often than is just), and I often ask for the next tests I think are needed. Most doctors have given me the lab orders that I request. As I always say, The least you get in this life is what you ask for. No ask. No get.

BRING THESE THINGS TO YOUR DOCTOR APPOINTMENT?

1) List of your symptoms. I had over 40 symptoms that totally seemed unrelated to me but indeed were in fact related in one way or another to Cushing's and/or other related hormonal problems (see post below for my full list).

2) Weight and blood pressure history. I called all my old doctors and got this info. I have this back 10 years now, and it is clear how much weight I have gained and how my bp has gone up, up, up! First, I created a list of every doctor I could remember seeing. Then, I looked up their phone numbers and addresses on the internet. Next, I called each office, spoke with someone in charge of medical records, and asked for a fax number where I could send my written request for medical records (see sample in post below).

3) Amenorrhea summary. I created a month-by-month list tracking whether I had a menstrual period or not. In the past two years, I only had 10 of 24 periods. It is another main symptom that led me to seek a diagnosis online.

4) List of your current medication. Be sure to include prescription name, dose, how many a day, reason. Include over-the-counter medicine as well, even vitamins. If you ever took a steroid, please make sure you notify your health care team, as long-term steroid use can cause Cushing's.

5) Before and after photos, including dates (even better to use the date feature on the camera to show the date on each photo). Get a small photo album/brag book and put the photos in order. Go back as far as you can to show how you used to look.

6) Photos of my stretch marks. It is best if you set the date feature on your digital camera to show the date on each photo. With old photos, just type out the Month and Year on a Word document, and then cut the page into little slivers to slide into your brag book. See post above for my photos.

7) Photos of my buffalo hump. I took photos every two weeks, facing different directions (left and right) in different clothes, in different rooms to show that the hump is not a result of bad shadows/lighting, etc (even better to use the date feature to show the date on each photo).

8) Lab results and medical records. I also got these from all of my past doctors back to 1995. It shows that I am not fat and diabetic (normal glucose for years now), and allows doctors to see that I am/was healthy overall before now. This project is easier than you think. I made a list of all my doctors and kept them in chronological order. I moved around a lot in my 20s so I had many many doctors. Then, I took to the internet and searched for the doctor online. I called each office and asked for their fax number and who is in charge of medical records. I then faxed a letter I wrote to each doctor. I will paste that letter below in new post. I got my records mailed within 7-21 days. No hassle, and nobody charged me any money for them, which they can, per page, according to HIPAA. For my weight and blood pressure summary, I wrote *taken at doctor's offices* in the footer. For the summary of my lab results, I wrote "This summary is comprised from medical records from many doctors' offices. The original lab results are available upon request" in the footer.

9) Medical literature. Bring copies with you that say that the best testing is midnight testing (particularly blood draws for cortisol serum and ACTH plasma, plus midnight salivary cortisol tests). Also find articles on cyclical Cushing's (see above for one source). Never tell a doctor, "I read on the internet or message board that... They will immediately dismiss you and us. Instead say, "According to the medical literature, most endocrinologists agree that midnight salivary cortisol tests and midnight cortisol blood serum tests can determine if a person has Cushing's even better than a 24 hour urinary free cortisol test." I have learned that I have had the greatest success when I spoke to a doctor in medical terminology. I wouldn't say, 'I pee too much.' I would say, "I think I may suffer from polyuria as I have UFCs with over 3,500 mL per collection." I believe docs take you seriously if you sound like you know what you're talking about. And let's face it, you do, because you followed my steps above, right?!

Plus, after many, many, MANY doctor appointments regarding Cushing's, I can assure you that no doctor has ever argued anything I said about the medical literature. They are not up on it! They haven't read what I--and you--have read, and they know it! Make sure you run your appointment like you know it, too! I promise you, it will benefit you in the end! :)

Here is a link to Cushing's Support & Research Foundation's list of medical articles on many topics: http://www.csrf.net/Articles.htm

10) Your desire to get well. You know your own body. DO NOT LET THESE DOCTORS KEEP YOU DOWN. Do not take no for an answer. If the doctor won't order a test, tell them you will go see another doctor. Tell them that this disease didn't earn a spot on the Discovery Health's show "Mystery Diagnosis" if diagnosing it were so easy.

11) A healthy mindset/attitude. You have the right to be healthy and happy. Put yourself first. Start using your frustration over this to get mad and get moving. Doctors are not untouchable medical gods. In fact, a recent study shows that doctors talk about themselves during *your* appointment! The more people they face letting them know that they are not the end-all-be-all, the better off their next patients will be. Tell them that you disagree. Show them the medical literature. Challenge their authority. They are not more important than you, and their opinions are not more important than the patient's.
Trust your instincts. Most sick people say this is what saved their lives. If you can't make it work, then tell the doc YOU'RE FIRED, and get on with your life of getting better. As an aside, I look forward to writing sweet little you-were-wrong-and-I-was-right letters to all previous doctors (10+), pointing out the symptoms they missed and including photos so they remember me. All said in a nice but direct way ... all done in an attempt to make the road easier for those who grace those exam tables after us.

Take care of yourself, and take care of business.

Mox