❓Has Cushing’s Affected your Job or Quality of Life?

I would love to take one of the surveys mentioned in this news article.  My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.

Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.

I could do as I chose – if I wanted to go somewhere, or do something, I just did.

Now, I work part-time and my studio is much smaller.  Everything I do is to accommodate my nap schedule.  I have to plan everything carefully so I can take my meds on time and be ready to sleep.

Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.

Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee.  (I went for it September 12!  Now I’ll have to explain to my endo.)

Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.

I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor.  Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing?  Or maybe the different brand is better for me.  Who can say?

What about you?  How has your life changed due to Cushing’s?

💊 Top Doctors Receiving Payments From Corcept, makers of Korlym

 

Top Doctors Receiving Payments From this Company

Totals listed account for all payments from August 2013 to December 2016.

DOCTOR PAYMENTS
PEJMAN COHAN

Endocrinology, Diabetes & Metabolism

BEVERLY HILLS, CA

$116K
RICHARD AUCHUS

Internal Medicine

ANN ARBOR, MI

$50,682
TODD FRIEZE

Endocrinology, Diabetes & Metabolism

BILOXI, MS

$40,012
ALAN COHEN

Endocrinology, Diabetes & Metabolism

MEMPHIS, TN

$38,156
AMIR HAMRAHIAN

Endocrinology, Diabetes & Metabolism

CLEVELAND, OH

$36,287
KIMBERLEY BOURNE

Endocrinology, Diabetes & Metabolism

ORLANDO, FL

$35,485
JAMES FINDLING

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

$31,486
TY CARROLL

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

$28,499
KEVIN YUEN

Endocrinology, Diabetes & Metabolism

SEATTLE, WA

$27,553
JOHN PARKER

Endocrinology, Diabetes & Metabolism

WILMINGTON, NC

$21,878

Top Teaching Hospitals Receiving Payments From this Company

Totals listed account for all payments from August 2013 to December 2016.

HOSPITAL PAYMENTS
HOSPITAL OF THE UNIV OF PENNA

PHILA, PA

$10,000
UNIVERSITY OF LOUISVILLE HOSPITAL

LOUISVILLE, KY

$5,000
UNIV OF MI HOSPITALS & HLTH CTRS

ANN ARBOR, MI

$5,000
CEDARS-SINAI MEDICAL CENTER

LOS ANGELES, CA

$4,550
UNIV OF MISSOURI HEALTH CARE

COLUMBIA, MO

$3,183
LANGLEY PORTER PSYCHIATRIC HOSPTIAL

SAN FRANCISCO, CA

$3,000
NATIONAL JEWISH HEALTH

DENVER, CO

$2,500
TEMPLE UNIVERSITY HOSPITAL

PHILADELPHIA, PA

$2,000
THE MOUNT SINAI HOSPITAL.

NEW YORK, NY

$2,000
ADVOCATE LUTHERAN GENERAL HOSPITAL

PARK RIDGE, IL

$1,700

 

See if your doctor is making money from this drug here:
https://projects.propublica.org/docdollars/company/corcept-therapeutics

⁉️ Can You Help With a Guest Question?

A guest on the message boards asks:

Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular periods, oily skin, acne, puffy face etc.

Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54396-i-have-a-strange-question-may-even-be-a-dumb-question

Thanks for your help!

⁉ What Do *You* Think?

This question was originally posted on Facebook.

 

I responded with a quote from this book: Harvey Cushing: A Life in Surgery

“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”

Other responses so far:

OP:  Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.

Mary Kelly O’Connor: I remembered from reading this book many years ago.

For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.

I know the circuses were exploiting the “freaks” but at least they could find a place in society.

I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.

OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…

Mary Kelly O’Connor:  My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)

 

 

⁉️ Can You Help? Adderall and Cushings

Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

⁉️ Cushing’s Survey

Cushie Jessica G writes:
​​​​​​​
“I am writing a research paper for my final exam. My thesis is that Cushing’s syndrome/disease is not rare, but frequently missed or under-diagnosed.

I have created 2 separate surveys as part of my research. One survey is for people who are undiagnosed but currently seeking diagnosis, the other is for people who have been diagnosed and treated.

Please take these quick surveys. I’m hoping that by incorporating these statistics into my paper I can make a valid argument and help raise awareness for all of us.”

— survey for undiagnosed people
https://www.surveymonkey.com/r/ZL77M97

— survey for diagnosed people
https://www.surveymonkey.com/r/6PQ7J87

⁉️ Would *YOU* Do This?

I remember someone on the House TV series trying a stunt like this on the episode titled Deception.

At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.

Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis

Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.

Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.

The study, Factitious ACTH- dependent, apparent hypercortisolism: the problem with late night salivary cortisol measurements collected at home,” was published in the journal Clinical Endocrinology.

The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.

The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.

Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.

Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.

The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.

When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.

The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.

The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.

The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.

The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.

Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.

They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.

From https://cushingsdiseasenews.com/2017/10/05/rare-case-of-woman-manipulating-late-night-saliva-cortisol-tests-to-get-cushings-diagnosis/