This is a 30 min Online Survey and Compensation is $50.00
Sign up at this link to receive an email invite to the study and see if you qualify.
What do you think?
ďźGrowth Hormone Study Opportunity
Here’s your chance to make your voice heard on Growth Hormone Issues.
Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.
Study Opportunity for Idiopathic Short Stature (ISS) Caregivers
This is a 30 min online survey and Compensation is $50
Please sign up at the link below for more information or to see if you qualify
âCan You Help? Very Few Symptoms
A guest on the Cushing’s Help message boards asked:
I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.
I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.
I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!
Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?
Anyone else with only a few symptoms?
Thanks!
Can you help Ellie out? Please respond here or on the Message boards.
Thanks!
âď¸ What’s on *Your* Medical ID?
You do have one, right???
I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.
There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.
There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.
So – what do you have on yours? Please share!
âWhat Do *You* Think?
This came up in the comments to https://cushingsbios.com/2018/11/17/jayne-in-the-media/
The question is
I dropped by this site because my friendâs daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?
What do you think?
âHas 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?
đ 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 COHANEndocrinology, Diabetes & Metabolism BEVERLY HILLS, CA |
$116K |
RICHARD AUCHUSInternal Medicine ANN ARBOR, MI |
$50,682 |
TODD FRIEZEEndocrinology, Diabetes & Metabolism BILOXI, MS |
$40,012 |
ALAN COHENEndocrinology, Diabetes & Metabolism MEMPHIS, TN |
$38,156 |
AMIR HAMRAHIANEndocrinology, Diabetes & Metabolism CLEVELAND, OH |
$36,287 |
KIMBERLEY BOURNEEndocrinology, Diabetes & Metabolism ORLANDO, FL |
$35,485 |
JAMES FINDLINGEndocrinology, Diabetes & Metabolism MENOMONEE FALLS, WI |
$31,486 |
TY CARROLLEndocrinology, Diabetes & Metabolism MENOMONEE FALLS, WI |
$28,499 |
KEVIN YUENEndocrinology, Diabetes & Metabolism SEATTLE, WA |
$27,553 |
JOHN PARKEREndocrinology, 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 PENNAPHILA, PA |
$10,000 |
UNIVERSITY OF LOUISVILLE HOSPITALLOUISVILLE, KY |
$5,000 |
UNIV OF MI HOSPITALS & HLTH CTRSANN ARBOR, MI |
$5,000 |
CEDARS-SINAI MEDICAL CENTERLOS ANGELES, CA |
$4,550 |
UNIV OF MISSOURI HEALTH CARECOLUMBIA, MO |
$3,183 |
LANGLEY PORTER PSYCHIATRIC HOSPTIALSAN FRANCISCO, CA |
$3,000 |
NATIONAL JEWISH HEALTHDENVER, CO |
$2,500 |
TEMPLE UNIVERSITY HOSPITALPHILADELPHIA, PA |
$2,000 |
THE MOUNT SINAI HOSPITAL.NEW YORK, NY |
$2,000 |
ADVOCATE LUTHERAN GENERAL HOSPITALPARK RIDGE, IL |
$1,700 |
See if your doctor is making money from this drug here:
https://projects.propublica.org/docdollars/company/corcept-therapeutics
âď¸ 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!
â What Do *You* Think?
This question was originally posted on Facebook.
I responded with a quote from this book: Harvey Cushing:Â 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 cushingâs 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:Â 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:Â 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)
âď¸ 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.