Connect
Anyone diagnosed with ACTH independent bilateral adrenal hyperplasia?
Diagnosed with ACTH-independent bilateral adrenal hyperplasia and had unilateral adrenalectomy in 2019. I was in "remission" for about 7 years, but its back now with a vengeance. I have my first appt at the end of June but I am looking at having my other adrenal gland removed and I am scared stiff!!
Anyone out there that can relate? TIA
Like
Helpful
HugInterested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.
Connect
@mslipe welcome to Mayo Clinic Connect. I am not familiar with ACTH - independent bilateral hyperplasia and don’t understand how it can be “back with a vengeance” since you had a unilateral adrenalectomy unless as you suggested, it might be the other adrenal gland. One thing I can assure you of is that you are never alone. There’s bound to be some members who have experienced something similar. Hopefully they will weigh in soon. In the mean time could you share what those 7 years of “remission” were like?
Hi Cheryl! Thank you for reaching out.
After my right adrenalectomy in 2019, my surgeon said I would likely need my left adrenal gland removed eventually. I should preface this with my diagnosis bilateral AIMAH was found incidentally on a CT scan of my abdomen for ovarian cysts/endometriosis.
Initially after surgery my cortisol levels remained within normal limits, and I did not require steroid replacement. After recovering from the surgery, I was able to work my 12h shifts, mountain bike, regular menstrual cycles, normal BP, normal cholesterol/LDL, normal thyroid, mental clarity/executive function intact.
Hello @mslipe, I had Cushings disease (pituitary), but know many patients that had adrenal Cushing’s. I’m sorry to hear what you’ve gone through and are facing again. There is a chance, with a superior adrenal surgeon, that you do not need to remove the entire adrenal gland. Seek out references and a second opinion from a surgeon that specializes in the adrenals. Also, check out CSRF.net for more patient information if you haven’t already. You are definitely not alone. After getting a second opinion, your options may change. Also, it’s not typical that you did not need steroid replacement after surgery unless you didn't have Cushing’s for very long and the other adrenal gland was still functioning normally. It is possible, but I am not a doctor, that the first surgery was not deemed successful and all the cortisol-producing cells were removed - causing you to have normal cortisol levels post surgery. I hope you are feeling ok!