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Cortisol deficiency, but with weight gain

Autoimmune Diseases | Last Active: 15 hours ago | Replies (110)

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YES! My autoimmune disorder started 11 yrs ago & was triggered by ankle reconstruction surgery. I started with "non-specific" symptoms that would culminate in episodes of extreme muscle soreness, excessive sleeping then into "shock". I gained 60 lbs in 4 months, which to me was absurd...I was a personal trainer at that time & wore a size 2 with 6% body fat. There was a lot of meds & more meds when those didn't work. After several years of this I applied to be admitted to the Mayo Clinic in Jacksonville...but, I "didn't meet criteria". Finally, at the start of 2026 I was sent to an Endocrinologist that tried to blow me off, at first, when I told him that I KNEW without a doubt that I had Adrenal Insufficiency. He said that I would have lost weight instead of gaining weight. He also stated that I was very tan & that wouldn't happen with AI & so on down the list. So, I told him that if he'd just do the specific testing that he would get to see something that, apparently, he'd never seen in his 39 yrs of experience...I would be that medical unicorn. He accepted the challenge and sure enough 1 hour into testing...positive Adrenal Insufficiency. He put me on Prednisone, against my arguments for Hydrocortisone instead. Over the last 6 months, I have had to make several ER visits & a hospital stay for Lactic Acidosis, which isn't a usual symptom/result but is classic of a medical unicorn. Yay, me?! Went back to my Endo, yesterday, and just happened to be showing signs of another Lactic Acidosis flare-up. The Prednisone wasn't working...finally, switched me to Hydrocortisone and was told to double my dose when I started feeling "off" again. Today, after 2 double doses yesterday & 1 this morning, my muscle soreness has greatly lessened, my balance is almost completely back, headache gone, my appetite is returning & I actually have some energy. I have suffered for years & within 24 hrs of the proper medicine & dosage...I'm feeling better than I have in a very long time!

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Replies to "YES! My autoimmune disorder started 11 yrs ago & was triggered by ankle reconstruction surgery. I..."

@psumm33 Welcome to Mayo Clinic Connect! I like your description of yourself as “a medical unicorn.” Have the doctors said how long you will be under treatment? Be sure to read some of the previous postings just so you’ll get an idea of how MCC works.

@psumm33 Your story is interesting and I'm glad you were able to advocate for yourself! I was on hydrocortisone for years for my low cortisol (fibromyalgia, chronic infections), but I never noticed it doing a lot for me. When I decided to wean off of it I found out just how dependant I was on it. Getting off of it was so horrible that I regretted ever starting on it in the first place. When I was finally off it, I started taking Adrenal Cortex (5 capsules per day) and I did that for a couple of months but wasn't sure how much it was helping. Then I went down to 2 capsules per day and gained 11 lbs in two weeks with no changes to diet or exercise. It wasn't until today seeing this thread that it occurred to me that could be why! I'm going to increase back to 5 Adrenal Cortex per day and see if the water weight comes off. Actually, over about 3 months of taking 2 Adrenal Cortex per day, I have lost 3 lbs of the water weight which now makes me wonder if my system is gradually improving on its own ask I fight the chronic infections. By the way, I have been a personal trainer in the past as well so I guess we both know the "standard" ideas and advice don't always (imo often) work.

I wanted to give you a heads up on maybe trying Adrenal Cortex as a more long term solution and also ask you if you think the water weight gain could be from reducing it. (Although I will find out soon as I go back up to 5 per day.)