Sleep

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Cushing's: Disease of the Night

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

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...

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Plop Plop Fizz Fizz: Oh What a Relief It Is

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

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

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!

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

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

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? 

This series of free online radio chats are for you.

MaryO, founder of Cushings-Help.com and Cushie.info, and Robin, active board member/blogger of Survive the Journey and Cushing's 365, 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.

- CushingsHelp | Internet Radio | Blog Talk Radio -

Interview with Dr. Ted Friedman DR. F 1/29/2009

Second Interview with Dr. Ted Friedman DR. F 3/12/2009

Dr. Ted Friedman Returns for his Third Interview 2/13/2011

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

Spinning Out of Control

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

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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

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)

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

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

•  Other Sections▼

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?

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

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.

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

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

Plain ol' Obesity or Cushing's?

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!

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

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

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.¹¹ Other 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

Do you see your story when reading Kathryn's?

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

Trip Recap

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

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

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

Life as a Cushie

Heading for Help

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 :)

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

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'

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

Erella's Story

Erella, who is featured in the last post, also has a one hour CBC 1999 documentary about her and her  introduction to the cushings world. It is 67 megs and you have to carefully follow instructions with rapidshare in the FREE DOWNLOAD area.http://rapidshare.com/files/441306528/01_Brain_Surgery_For_My_Soul.mp3

I want to thank Erella for sharing so much of herself and her story, as we all learn the most about Cushing's from other Cushies. 

Hugs to you, Erella.

Melissa

Cushing's documentary

Check out Erella's 30 minute documentary featuring her battle with Cushing's. http://www.erella.com/Video_Lightbox/index.html

SOS: Help a Cushie

26-year old Kathryn would like to hear from anyone with the same condition. She can be contacted by e-mailing kathrynanne1984@hotmail.co.uk

http://www.runcornandwidnesweeklynews.co.uk/runcorn-widnes-news/runcorn-widne...

New test for the Growth Hormone Deficient?

AEterna Zentaris, Inc. (Nasdaq:AEZS) announced that it has reached agreement with the Food and Drug Administration (FDA) on a Special Protocol Assessment (SPA) for Solorel® (AEZS-130, macimorelin) which will enable the Company to complete the ongoing registration study required to gain approval as a diagnostic test for Adult Growth Hormone Deficiency (AGHD).

Aeterna Zentaris is a late-stage oncology drug development company currently investigating potential treatments for various cancers including colorectal, ovarian, endometrial cancer and multiple myeloma.

GUEST POST: Best Kept Secret in Medicine

Sharmyn McGraw emailed this last week. You can read my previous posts about Sharmyn for some of the best info we have about Cushing's--from the patient's perspective here and here.

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

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor. 

Hello everyone!

Please take one minute and watch this video, Dr. Daniel Kelly from the John Wayne Cancer Institute in Santa Monica, CA. 

Pituitary gland problems have many symptoms (video and article)
       *(melissa says, "then share it with all your friends on facebook!"

Many of you know I am a national spokesperson for those afflicted with Pituitary Brain Tumors and/or Hormonal Disorders-The Best Kept Secrete in Medicine. And don’t panic, I have never asked anyone for a financial donation and I’m not now, but I do need your help.

I receive over a 150 emails a day and many of them are from people asking me to pass along a prayer or some damn thing to a zillion of my closest friends or you and everyone you know will have some angel pissed off and there will be no blessing for you….! WELL, it’s time we pass around something that can really make a difference in your life or even save someone’s life-I promise!!!!

Through the years I have done professional speaking, TV shows and written articles all to help raise awareness for those afflicted with pituitary disease. But the biggest impact was the show I did for the Discovery Health channel, Mystery Diagnosis; the show features my story living undiagnosed for seven horrible years with Cushing’s disease, caused by a pituitary brain tumor. Thank God the show is still airing and still saving lives!!! So please send this email to a zillion people to help make an even bigger impact!!!! And watch the ABC special with Dr. Kelly and pass it to all your friends, put it on FaceBook, YouTube, and Tweet your friends. Healthcare needs our help!!!

I have received hundreds of emails through the years and met hundreds of people whose lives were forever changed because of one TV show. Literally because of one Mystery Diagnosis episode people have been correctly diagnosed with a disease that doctor after doctor missed for years and years. Sadly in many cases because of a prolonged diagnosis it left the patient disabled, not because the pituitary tumor wasn’t treatable but simply because of lack of current and accurate information among our medical professionals and the public.

Pituitary tumors are the Best Kept Secrete in Medicine because they are so often misdiagnosed but can cause so many people to suffer or even worse die without proper treatment. Usually the patient symptoms present as multiple common health issues and unless your medical professional is trained to recognize the signs and symptoms related to a hormonal disorder caused by a pituitary tumor the patient is often left undiagnosed or treated for many different health conditions but never getting to the root cause.

The hard facts are we lack proper education so severely in the US about pituitary tumors and/or hormonal disorders that even our highly respected Dr. Oz made a completely inappropriate comment on TV about a patient that was found to have a pituitary tumor on the Oprah show. His statement was something about simply “plucking” a pituitary tumor out which is a perfect example of the lack of education even among a medical doctor who is looked at by many people as a know-it-all of medicine. But no one medical professional knows everything; however, when a patient presents with a laundry list of poor quality of life issues or a pituitary tumor is found on an MRI it certainly warrants a proper medical evaluation and if it is out of the doctors expertise they need to step up and refer their patient for another opinion.

Pituitary disease is a subspecialty field of Neuro-endocrinology. Obviously as a cardiologist it is out of Dr. Oz’s expertise but like many medical professionals, grossly downplaying the severity of a life threatening illness or not admitting when something is out of their level of expertise is just bad healthcare. Most pituitary patients go far too long without a proper diagnosis and in far too many cases never getting a diagnosis at all. We have been trained to trust our doctors and assume we are getting the best medical treatment; unfortunately when it comes to a pituitary disorder that just isn’t the case.

Pituitary tumors and/or disorders can cause: Rapid weight gain (obesity) or weight loss, heart disease, diabetes, high blood pressure, depression, anxiety, infertility, low libido, sleeplessness, hair lose, abnormal hair growth, enlarged hands/feet/jaw, blindness, and more. Most people suffer for years with a pituitary tumor and are most often told by their physician, “It’s all in your head. Exercise more and eat less” Well they are party correct but for all the wrong reasons...the pituitary gland sits at the base of the brain, and yes, hormonal disorders caused by a pituitary tumor can at times make the patient feel mentally unstable but more exercise and eating less is not proper treatment for a serious brain tumor. And we need better education for our medical professionals.

Studies show one in five adults may have a pituitary tumor-that’s 20% of our population. A healthy pituitary gland is as important to our quality of life as a healthy heart, liver, kidneys, and any other major organ or body part.

The good news is pituitary disorders in most cases is a treatable illness if a timely and accurate diagnosis is made but unfortunate they are life threatening when left untreated. So please take time to educate yourself and others about the Best Kept Secrete in Medicine. Please pass this email to everyone you know and FORSURE you will be improving someone’s life and you could even be saving someone’s life.

Many blessings,

Sharmyn McGraw

www.brain-tumor.org or www.hormones411.org
 

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center www.brain-tumor.org at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor.

RIP Janet

Rest in peace, dear Janet.

My heart breaks for Jennie, Janet, and their entire family. I am sorry for your loss, and I am sorry that the medical community failed your family.

Thank you Jennie, for sharing this story. In your honor and hers, I will share this story here on my blog, in hopes of saving someone's life.

The Cushing's community *must* continue to generate awareness for this devastating disease, and we must lead the medical community by example.

No life should be lost to this preventable disease. ~mm

Jennie Whitehead Brick wrote:

My sister, Janet Whitehead Mitchell, died Sept. 16, 2010 of Cushing's Disease. The autopsy revealed that she had cancer of the pituitary gland. She is only the 140th person in medical literature to have cancer of the pituitary gland. She was 59 years old. She had many of the symptoms of Cushing's for a few years, but ...was diagnosed just a few days before her death. I will do what I can to spread the word about Cushing's in the hope that someone else will get diagnosed earlier on in their fight with the disease.

Click here and scroll down to see Janet's high school photo and click here to see the photo from her obituary.

Collection of Cancerous Brains Helps Show Neurosurgery’s Rise

Super New York Times article about Dr. Harvey Cushing's collection of brains in jars, now housed in the Cushing Center at Yale. Homage to him as father of modern neurosurgery. Center has visiting hours! Be sure to check out the slide show:

Dr. Harvey Cushing, one of America's first neurosurgeons, kept extensive samples of his work, but many of the details have been lost. The brains and photos that are on exhibit at the Cushing Center at Yale University are believed to have been made as part of the patients' medical records. The collection includes photos taken of patients before and after operations, tumor specimens, and microscope images. In total, there are almost 10,000 glass plate negatives of patients treated by Dr. Harvey Cushing between 1902 and 1933.

Credit: The Harvey Cushing Brain Tumor Registry, Cushing/Whitney Medical Library

Collection of Cancerous Brains Help Show Neurosurgery's Rise

August 23, 2010
Inside Neurosurgery’s Rise
By RANDI HUTTER EPSTEIN, M.D.

NEW HAVEN — Two floors below the main level of Yale’s medical school library is a room full of brains. No, not the students. These brains, more than 500 of them, are in glass jars. They are part of an extraordinary collection that might never have come to light if not for a curious medical student and an encouraging and persistent doctor.

The cancerous brains were collected by Dr. Harvey Cushing, who was one of America’s first neurosurgeons. They were donated to Yale on his death in 1939 — along with meticulous medical records, before-and-after photographs of patients, and anatomical illustrations. (Dr. Cushing was also an accomplished artist.) His belongings, a treasure trove of medical history, became a jumble of cracked jars and dusty records shoved in various crannies at the hospital and medical school.

Until now. In June 2010, after a colossal effort to clean and organize the material — 500 of 650 jars have been restored — the brains found their final resting place behind glass cases around the perimeter of the Cushing Center, a room designed solely for them.

These chunks of brains floating in formaldehyde bring to life a dramatic chapter in American medical history. They exemplify the rise of neurosurgery and the evolution of 20th-century American medicine — from a slipshod trial-and-error trade to a prominent, highly organized profession.

These patients had operations during the early days of brain surgery, when doctors had no imaging tools to locate a tumor or proper lighting to illuminate the surgical field; when anesthesia was rudimentary and sometimes not used at all; when antibiotics did not exist to fend off potential infections. Some patients survived the procedure — more often if Dr. Cushing was by their side.

Most of the jars contain a single brain; a few hold slices of brains from several patients. Some postoperative photographs next to the jars show patients with tumors bulging from their heads. When Dr. Cushing could not remove a tumor, he would remove a piece of the skull so the tumor would grow outward rather than compress the brain. It was not a cure, but it relieved the patient of many symptoms.

Dr. Cushing, born in Cleveland in 1869, was an undergraduate at Yale and finished his career here as a professor of history of medicine. In between, he went to Harvard for medical school, did his early surgical training at Johns Hopkins and became a surgical professor there, and then spent most of his career as chief of neurosurgery, a new specialty, at Peter Bent Brigham Hospital at Harvard (now Brigham and Women’s).

When he began operating in the late 19th century, a few other doctors were also venturing into the brain, but for the most part the patients did not survive the procedure.

“In the first decade of the 20th century, Harvey Cushing became the father of effective neurosurgery,” the medical historian Michael Bliss wrote in “Harvey Cushing: A Life in Surgery” (Oxford, 2005). “Ineffective neurosurgery had many fathers.

“Cushing became the first surgeon in history who could open what he referred to as ‘the closed box’ of the skull of living patients with a reasonable certainty that his operations would do more good than harm.”

Sometimes doctors went into the brain and could not find the tumor. Sometimes they talked to patients during surgery. Dr. Cushing, for one, often used only the local anesthetic Novocain. (The brain itself does not have pain receptors, but having one’s skull cut open must have been agonizing.) Mr. Bliss writes that in 1910, midway through a 10-hour operation on the renowned physician and Army Gen. Leonard Wood, Cushing wanted to stop operating and continue another day, but General Wood — fully alert — begged him to continue.

Dr. Dennis Spencer, the chairman of neurosurgery at Yale and the Harvey and Kate Cushing professor of neurosurgery, said Dr. Cushing’s major accomplishment was “his meticulous operative technique.”

“Whatever approach he was going to use to get to a tumor,” Dr. Spencer said, “he had this incredibly good judgment in terms of where the tumor was, getting there without harming the brain and then getting out.”

Brain surgeons in those days were medical sleuths, relying largely on patients’ accounts of their symptoms to figure out where the tumor was. Dr. Cushing popularized an eye exam that took advantage of the specific ways in which different tumors can distort vision — a strategy used into the 1970s, when M.R.I.’s and other imaging tools replaced it. Even today, many tumors in the pituitary gland, which straddles the optic nerves, are initially detected because patients have trouble seeing.

Dr. Cushing also discovered that pituitary tumors could lead to vast changes in the body. Cushing’s disease and Cushing’s syndrome — two illnesses linked to hormones gone awry — are named for his discoveries.

Indeed, comparatively little progress has been made since Dr. Cushing’s time in actually prolonging life in brain-cancer patients. “It is fascinating how far we’ve come in terms of technology but not really in terms of progress for most malignancies,” Dr. Spencer said. “Everything we’ve done in the last 100 years has changed the progress for malignant brain tumors very little, extending life maybe eight months to two years.”

He added, though, that “in many tumors we are getting closer to the genetic understanding, and I’m optimistic in the next 10 years we will make a lot more progress.”

In addition to his medical achievements, Dr. Cushing won a Pulitzer Prize in 1928 for his biography of his mentor, Dr. William Osler. He devoted his life to his work, leaving little time to his five children. His three daughters gained notoriety for their marriages — one to James Roosevelt, a son of President Franklin D. Roosevelt, whom she divorced, later marrying the publishing plutocrat John Hay Whitney; one to William Vincent Astor, heir to a $200 million fortune, whom she divorced, later marrying the painter James Whitney Fosburgh; and the youngest to the Standard Oil heir Stanley Mortimer Jr., whom she divorced, later marrying the CBS founder William S. Paley.

The collection expanded while he moved from Johns Hopkins to Harvard and eventually Yale, where they ended up in dusty storage bins before their recent $1.4 million restoration, partly paid for by money from a former patient’s family. The brains and their records were a “complete mess,” recalled Dr. Gil Solitaire, a professor of neuropathology at Yale in the 1960s who once shared an office with some of the Cushing paraphernalia. “Some were totally dehydrated, and the jars were cracked.”

In 1979, the specimens were moved from the bowels of the hospital to the basement of the medical school’s dorms. It was there that the students in the 1990s started a Brain Society — with membership extended to anyone who had the nerve to sneak into the dank basement, walk through the cluttered hall of brains and sign a poster, which now hangs in the Cushing Center.

“It was a rite of passage,” said Dr. Tara Bruce, now an obstetrician-gynecologist in Houston, who became a society member during her first year of medical school in 1994. “Everyone went to see the brains. It was surreal. I had just got to Yale and I remember thinking, ‘I guess Yale has so much great stuff that they can just shove a bunch of brains in the basement.’ ”

Dr. Christopher J. Wahl, an assistant professor of orthopedics and sports medicine at the University of Washington, wrote his thesis about the brains when he was a Yale medical student, stirring an interest in the restoration.
“The most incredible thing is that it’s not just the physical documentation of the founding days of neurosurgery but a social document,” Dr. Wahl said. “The bravery of these patients that really had nowhere to turn and this guy who was — cowboy is the wrong word, but an incredible innovator who was doing things at the right time and place.”

The Cushing collection in the Cushing/Whitney Medical Library at Yale University at 333 Cedar Street, New Haven, is open to the public Monday through Friday, 8 a.m. to 8 p.m.; Saturday, 10 a.m. to 8 p.m.; and Sunday, 9:30 a.m. to 8 p.m. (203) 785-5352.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression

For the regular readers of this blog, you know that I may be more bothered by my languishing mental acuity than changes to my body. As my previous two posts show, my body has faced significant changes. Truthfully, I am bothered by both, rightly so.

I want to share a medical article Susan posted today. She is an active member of the message boards. We frequently share peer-reviewed medical literature, always in an attempt to understand our disease better. These "Cushies" know more about Cushing's than many, MANY endocrinologists.

I encourage you to click through and read the article below. I will excerpt a few passages here.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression.
J Neuropsychiatry Clin Neurosci 17:159-166, May 2005. Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D. Tampa, Florida. © 2005 American Psychiatric Press, Inc.

ABSTRACT

Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis. The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.

CASE SERIES

Case 4 (BLOGGER NOTE: This is totally me! I moved it to the top spot because this is a "cushie.")
Ms. D is a 36-year-old married Anglo woman, employed as a nurse, diagnosed with an ACTH-producing pituitary microadenoma in 1992. She was treated surgically following a brief period of hormone deficiency. At the time of her psychiatric assessment, however, she had regained full hormonal function. Ms. D reported that since regaining her hormonal function she noticed some "dragginess." She reported there were times when she did not feel very motivated, and she thought that it took much more energy for her to do her normal activities. She reported that when she would take pseudoephedrine for sinus problems, she would see things "with more clarity" and that she would be able to be more focused in her attention and her ability to complete her tasks. Otherwise she tended to procrastinate and get distracted from various tasks.

Case 1
Mr. A is a 48 year-old Anglo lawyer and architect, diagnosed with a pituitary adenoma (clinically nonfunctioning) and treated with a transsphenoidal resection in 1997. He first noted memory problems in 1991 that worsened over the years, causing problems such as concentration and focused attention. He reported problems such as getting lost in familiar places and forgetting the names of people he had known for many years. He believed his thinking process was slow and he was "not as quick on the uptake" as before. He reported that he had an excellent memory, never having to use a reminder book of any kind prior to these symptoms.

Case 2
Ms. B is a 55-year-old Anglo homemaker with a history of a prolactinoma, diagnosed 15 years before her psychiatric evaluation. She reported that her symptoms of the tumor were primarily mood swings, headache, and loss of menstrual periods. She underwent surgery followed by radiation therapy, ultimately developing panhypopituitarism. Since then, she has been managed on hormone replacement, but she began to notice short-term memory difficulties. She reported difficulty finding the right words to express her thoughts. She also noticed difficulty in concentration and focused attention. She reported occasional fatigue and depressed feelings. She reported intermittent suicidal thoughts when she reported the depressed mood, but no active plans of suicide were reported during those times.

Case 3
Ms C. is a 47-year-old Anglo woman, employed as a management supervisor and diagnosed with a pituitary macroadenoma (clinically nonfunctioning) in 1994. She underwent transfrontal surgical resection and did not receive any postoperative radiation treatment but did develop panhypopituitarism. Since 1996, several changes in her behavior and personality were noted. Prior to the tumor she was a very active person. She was able to do very well at work and maintain a leadership position. She could do multiple tasks at once and received a lot of satisfaction from her work. However, after her surgery and recovery, she noticed that she was no longer able to multitask. She was deriving less satisfaction from her work and experienced transient periods of sadness. However, she was most concerned about her lack of energy and motivation. When she was able to work, she had to organize her activities very thoroughly and continuously write down everything in order not to forget what her tasks were. It took a lot of mental energy to function, and after work she would often need to take a 2-hour nap when she returned home. She showed no motivation to adequately take care of her home, including normal household chores. She reported she was not able to muster up much enthusiasm to interact with her grandchild because she was concerned about her energy and drive.

OH YEAH: There was one other time I felt skinny

Cushing's and its related hormonal imbalances have led me to gain 100 pounds in about 5 years. That's difficult on a self-esteem. Recently, I liked what I saw in the mirror.

Boston, Massachusetts, May 2010

 

 

Austin, TX, July 2010

 

 

WANNA LOOK LITTLE: Get next to something bigger!

Some days, I don't care. I am going to do something fun. When I saw this hippo in a small Texas town, I knew the hippo people put those steps there for a reason. I tell you what... I've never felt skinnier!

 

Tell me all about yourself

Hi there. Soooo much has happened, and I am really late getting all of it posted here. In the meantime, I found something I wrote back in 2007 on the Cushing's message boards. Sadly, I feel the same way today. Maybe soon, I'll start to feel better.

It is difficult to see your body change when you are doing nothing to provoke it.
It is difficult to see your body betray you.
It is difficult to admit that your body is no longer your own.

So, while I'm getting my ducks in a row to update and share lots of good Cushing's info, maybe you can tell me more about YOU. Who are you, and why do you follow me on this blog?

I would love to have some guest moxie posters. Email me at moxiemelissa at symbol gmail.com, and tell me your story. I would love to post it here to share with others. If that is okay, please be sure to let me know in your email.

Have a good weekend.
Melissa

Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

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.

Pay no attention to the girl behind the smile.