Cushing’s Syndrome Patient Advisory Board: Patient Qualifier
Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.Q1: Are you a U.S. Citizen and at least 18-years or older?
Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?
Q3: Did your doctor find a tumor on your Pituitary Gland?
Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:
- ketoconazole
- ISTURISA® (osilodrostat)
- KORLYM® (mifepristone)
- SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).
Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.
If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.
- Email: kirsten@thinkentrada.com
- Mobile: 936.232.5940
Can You Help?
❓Can You Help?
Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck.
After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.
I have extra fat in my sternal notch as well, looking at these pictures do I have a moon face, etc.
I’m waiting for the results of my 24 hour urine test.
Thought I would ask to see what you all thought. Thanks for your help.
This potential Cushie has posted several photos here.
Please respond here, on the message boards, or in the original post.
Thanks!
❓Can You Help?
Can someone please offer help, ive been suffering for a year and just got blood results today with a high cortisol reading. My doctor said that my contraceptive pill could have caused this, however, I am not on the regular pill but on the POP progesteron only pill.
Is anyone aware of if this raises cortisol levels the same way the regular combined pill does?
Any help would be so very much appreciated!
Please respond here, on the message boards, or in the original post.
Thanks!
❓Can 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!
❓Can You Help? Possible Cushing’s or Cortisol Issue
Hi wondered if anyone could help me out – been suffering with these symptoms lately and wondered if cortisol could be the issue
– Thinning legs
– Fat building in the trunk (abdomen and chest)
– Seemingly more fat under my chin
– Excessive fatigue even after a nights sleep
– Weak muscles – mainly back /arms and shoulders
– muscle wasting
– Feeling very low and anxious
Thanks in advance,
Can you help JT out? Please respond here or on the Message boards.
Thanks!
❓Can You Help? Looking for Naturopath
A guest on the Cushing’s Help message boards asked:
Hi, anyone here able to recommend a naturopath who has been successful in getting Cushings under control? Thanks!
Please comment here and I will get your answers to Heidi or on the boards directly.
Thanks!
❓Can You Help? Normal Test Results
From the Message Boards:
My GP has suspected Cushings for a while now. I have the extreme fatigue, muscle weakness, round face, facial flushing, Buffalo hump, weight gain right in midsection – all the alleged tale-tell signs. However, I’ve had to urine tests and one blood test and they are always normal.
I’m seeing a third endo now and she agrees with my GP and plans to do another series of blood tests.
I guess my question is has anyone else out there ever had initial normal cortisol test results only to later find out it’s Cushings?
Please comment here and I will get your answers to Lizzy or on the boards directly.
Thanks!
❓Guest Question: Legal Assistance for Cushing’s Patients
If you can help, please respond here or on the Message Boards. Thanks!
I believe I need legal assistance related to i humane treatment by city and/or county officials. I can explain further, if need be, once I find out if it’s even possible to get help. And I certainly cannot afford to pay an attorney, since my income is SSD (Disability), which is low and fixed, which has been the case since Cushing’s reared it’s remorseless, destructive head in 2008. Is there any legal assistance fund set up for Cushing’s patients?
❓Can You Help? Newbie Question about CBD Oil
This is on the message boards at http://cushings.invisionzone.com/tags/help%20to%20lower%20cortisol%3F/. If you can’t access it, respond here and I’ll share.
I would like to know if anybody has tried CBD oils to lower their cortisol levels? I have asked my Dr but he isn’t knowledgeable about whether CBD oils are useful for lowering cortisol levels. If anybody has tried them or has any information on there use in this field I would be interested in find…
❓Can You Help?
Guest Question from the message boards: Low TSH, Low FT4, buffalo hump and many other symptoms
I have been struggling with progressive symptoms of extreme fatigue, muscle weakness, increased anxiety and depression, rage, acne, weight gain, and sweating just doing small tasks over the last 3 to 4 years. I also have a very hard time controlling my body temperature. I get really cold, turn the heat up, get really hot, turn the heat down, over and over throughout the day. (I’m 36 years old) If I’m sitting I’m freezing. If I’m up moving I’m on fire and sweating. Just such dramatic ends of the spectrum. Anyway, for a long time my GP was only checking my TSH. (Hypothyroidism runs strong in my family). My TSH has always been on the low end of normal. I was feeling so awful, I insisted they were missing something and asked them to check my FT4. That has also always ran at the lower end of normal. They treat me with Levothyroxine to try to increase my FT4, but in doing so, cause my TSH to go even lower. I googled what it meant to have a Low TSH with a low FT4 and it said it could be hypothyroidism caused by a pituitary tumor. I then came across Cushing’s which started showing pictures of the classic “buffalo hump” and my jaw hit the floor.
About a month ago, I caught myself in profile in my mirror and was completely taken aback by my appearance. My husband and I aren’t sure how long my neck has looked this way. Either way I was just wondering what others thoughts were. My GP has ordered some kind of cortisol test thus far that I’ll go for tomorrow. I would also like an MRI of my pituitary and possibly adrenals. I’m just tired of sleeping my life away and have been searching for answers for so long. Please let me know what you think of the hump.
Are there other causes for this appearance? Thanks