Some Direction

I am being tested for this, can anyone give me any advise?

Report post

2 replies. Join the discussion

I went through all the testing for Cushing's . I was diagnosed with acth incidental macrodonular adrenal hyperplasia (AIMAH)... I had subclinical Cushing's. I had all the symptoms but not the stretch marks and hump on back. I had excess cortisol being realeased as I had tumors on both of my adrenal glands. My endo was able to get me into NIH ( National Institute for Health) in Bethesda Md.. They took my adrenal glands out and now I am on hydrocortisone and florinef for the rest of my life. What are all your symptoms... is it pituatary? What kind of testing are they doing...where do you live? Is your Dr. well trained in Cushing's as some Dr.'s aren't and don't know what it is. There is a cushings partner program on the internet that I am a member of and it has helped me alot. There are others that go through this and it is a great support group. I researched and researched the internet for all the info on Cushing's I could but the support group is really great for help and answering any questions you may have. I am on through facebook but it is a closed private group. If you are on facebook put in Cushing's Partner program and it will take you there. I hoped this has helped. I just had my bilateral adrenalectomy in October and this is all new to me now. Keep in touch and I'll help in any way I can. Kathy

Report post

I did my testing at UCLA, 2002, extensive, when Surgeon Dr. Daniel Kelly was there. Surgery 12/03. I did look like a Cushing's patient, with the Cherub face and excessive weight gain, hump on neck area, all the signs. It took them over 14 years to figure it out, and I looked like I was pregnant with twins 'for years'. I had a huge MACRO tumor in my Pituitary, and they took most of it out. It was a hard surgery, but so far the tumor has never come back. I do have complications from the surgery, and I live with low adrenal on and off, struggle and function as best I can. I have had much grief over the loss of my health, and learning to love my body as it is now. I had Cyclic Cushing's disease. You can learn more from (Cyclic Cushing's Disease Network). If I can be of any help, please don't hesitate to email me.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NADF

Help the National Adrenal Diseases Foundation reach its goals and support people like yourself by making a donation today.

Donate to the National Adrenal Diseases Foundation

Discussion topics

Resources from NADF

Join the Cushing's Disease Community on Inspire Today!

Community leaders