Cushing’s Awareness Challenge 16

Posted on April 15, 2014 by MaryO

robin-support

That’s for sure!  Cushing’s patients have a lot of support these days, at least online.  I’m not seeing much offline in the way of regular group support meetings.

Over the years, there have been lots of local meetings but they’re mostly one-time events.  There are pictures of some of the past meetings here: https://www.facebook.com/CushingsInfo/photos_albums listed by place and date.

Many Cushing’s patients on the message boards and in Facebook groups exchange phone numbers and email addresses to get offline support.

Other ways to help support others you may never meet are to agree to be interviewed in a live voice chat (these are added to the podcast for later listening) or submit a bio.

The more you share, the more support others get…and the more they’ll share with you.

 

 

maryo colorful zebra

 

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Could you Shed Some Light on Cushing’s Disease?

Posted on April 14, 2014 by MaryO

Dear Dr. Roach: Could you shed some light on Cushing’s disease? Four people in the same family have it. The doctors say it has something to do with the thyroid gland.

— Anon.

A: Cushing’s syndrome, which is different from Cushing’s disease, is an excess of cortisone or similar corticosteroids. It can be caused by taking too much steroid for too long, usually as treatment for a serious medical condition. Cushing’s disease is a special case of Cushing’s syndrome, when the excess cortisone is caused by a tumor in the pituitary gland, which spurs the adrenal gland to make excess amounts of hormone. Weight gain, almost exclusively in the abdomen, a striking round “moon” face, a fat pad on the back of the neck and upper back (“buffalo hump”), diabetes, pigmented stretch marks and high blood pressure are common findings in any form of Cushing’s syndrome.

It is very unusual for Cushing’s disease to run in families. Also, it does not affect the thyroid, although thyroid conditions can sometimes mimic Cushing’s (and vice versa). I suspect that what this might be is a rare condition called multiple endocrine neoplasia type I (MEN-1). This does run in families, and combines risk for pituitary, parathyroid and pancreatic islet cell tumors. (The parathyroid glands sit on top of the thyroid gland and secrete parathyroid hormone, responsible for calcium metabolism. The pancreatic islet cells are where insulin is made.) Not everybody with MEN-1 will have tumors in all of these glands. Parathyroid tumors are the most common.

An endocrinologist is the expert in Cushing’s and the MEN syndromes.

​Dr. Keith Roach writes for North America Syndicate. Send letters to Box 536475, Orlando, FL 32853-6475 or email ToYourGoodHealth@med.cornell.edu.

From http://herald-review.com/news/opinion/editorial/columnists/roach/dr-keith-roach-teeth-grinding-is-common-in-the-elderly/article_bef63ba4-9b5e-5bff-b66a-3530be158857.html

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Cushing’s Awareness Challenge: Day 11

Posted on April 11, 2014 by MaryO

robin-uncontrolled

Robin has shared this quote from Dr. Prevedallo.  You can read more at the link at http://brainsurgery.upmc.com/_pdf/Review-of-Endocrin-Cushings.pdf

Over the years, I have seen that this is true, sometimes even for controlled Cushing’s.  Far too many Cushies have died.

Here are some of those that I know of:

Cushing’s is a terrible disease.

There is another Cushie I should add to this list. During the time I was home from NIH just before pituitary surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!  I still have the college alumni magazine that mentioned this.  I’ll have to find that and add it to the In Memory list.

My husband shared a bit about her in my bio:

During the same time Mary was at NIH, another woman had the same operation. She came from Mary’s home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

 

I know we’re always fighting with doctors to get diagnosed, to get treated but reading the stories of these people will hopefully inspire people to fight even harder to be heard.

Stay safe – don’t get added to this list!

8e1d2-maryo_colorful_zebra

 

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Cushing’s Awareness Challenge, Day 4

Posted on April 4, 2014 by MaryO
Another idea I borrowed from Robin – using a Wordle as inspiration for today’s post.
Even though I’m “in remission” since 1987, I’m still way too fatigued, napping every afternoon for several hours.  People think I should be normal since my pituitary surgery was so long ago.  Well, no.
me-tired
Just a few days ago, I posted this abstract on Severe fatigue in patients with adrenal insufficiency.  I don’t think that they needed to do this study at all.  Just ask any Cushie!
Giebels V1, Repping-Wuts H, Bleijenberg G, Kroese JM, Stikkelbroeck N, Hermus A.

Author information

Abstract

BACKGROUND:

Fatigue is a frequently experienced complaint in patients with adrenal insufficiency (AI) and may be influenced by cortisol levels.

AIM:

The objective of this study was to determine the prevalence of severe fatigue in adrenal insufficiency (AI) patients, to assess which dimensions contribute to fatigue severity and to determine the association between salivary cortisol levels and momentary fatigue.

SUBJECTS AND METHODS:

We performed a cross-sectional study in the outpatient department of a university hospital. Included were 27 patients with congenital adrenal hyperplasia (CAH), 26 patients with primary AI (PAI), 24 patients with secondary AI (SAI) and 31 patients with adrenal insufficiency after treatment for Cushing’s syndrome (Cush-AI). Measurements included computerised questionnaires to determine fatigue severity and physical and psychosocial contributors. Patients took four saliva samples at home, in which cortisol levels were measured.

RESULTS:

Severe fatigue was experienced by 41 % of the CAH patients, 42 % of the PAI patients, 50 % of the SAI patients and 42 % of the Cush-AI patients. Psychological distress, functional impairment, sleep disturbance, physical activity, concentration problems and social functioning contributed to the subjective experience of fatigue. Salivary cortisol levels were not correlated with momentary fatigue.

CONCLUSIONS:

A considerable proportion of AI patients experience severe fatigue. Salivary cortisol level is not a significant predictor for momentary fatigue in AI patients.

PMID:
24615365
[PubMed – in process]

From http://www.ncbi.nlm.nih.gov/pubmed/24615365

 

Back to my nap now…

maryo colorful zebra

Filed under: adrenal, Cushing's, pituitary | Tagged: , , , , , , , , , , , , | 3 Comments »

Severe fatigue in patients with adrenal insufficiency: physical, psychosocial and endocrine determinants

Posted on March 25, 2014 by MaryO
Giebels V1, Repping-Wuts H, Bleijenberg G, Kroese JM, Stikkelbroeck N, Hermus A.

Author information

Abstract

BACKGROUND:

Fatigue is a frequently experienced complaint in patients with adrenal insufficiency (AI) and may be influenced by cortisol levels.

AIM:

The objective of this study was to determine the prevalence of severe fatigue in adrenal insufficiency (AI) patients, to assess which dimensions contribute to fatigue severity and to determine the association between salivary cortisol levels and momentary fatigue.

SUBJECTS AND METHODS:

We performed a cross-sectional study in the outpatient department of a university hospital. Included were 27 patients with congenital adrenal hyperplasia (CAH), 26 patients with primary AI (PAI), 24 patients with secondary AI (SAI) and 31 patients with adrenal insufficiency after treatment for Cushing’s syndrome (Cush-AI). Measurements included computerised questionnaires to determine fatigue severity and physical and psychosocial contributors. Patients took four saliva samples at home, in which cortisol levels were measured.

RESULTS:

Severe fatigue was experienced by 41 % of the CAH patients, 42 % of the PAI patients, 50 % of the SAI patients and 42 % of the Cush-AI patients. Psychological distress, functional impairment, sleep disturbance, physical activity, concentration problems and social functioning contributed to the subjective experience of fatigue. Salivary cortisol levels were not correlated with momentary fatigue.

CONCLUSIONS:

A considerable proportion of AI patients experience severe fatigue. Salivary cortisol level is not a significant predictor for momentary fatigue in AI patients.

PMID:
24615365
[PubMed – in process]

From http://www.ncbi.nlm.nih.gov/pubmed/24615365

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