Cortisol deficiency, but with weight gain

I'm going through everything you're going through! My doctor is amazing and believes its a condition call Secondary Adrenal Insufficiency. If you look that up, you will see all of the symptoms match. I'm seeing an endocrinologist next month. In my case, without the blood tests, including cortisol level, estrogen and progesterone, I wouldn't have known as I also have EDS and I'm post menopausal. Cortisol is necessary to handle stress, whether its daily stress any surgeries and if you get sick with a cold! This condition is life threatening if not treated and most likely, I will carry an emergency kit and be on hormone therapy for the rest of my life. If you research Secondary Adrenal insufficiency, you may find a lot of information. Hope it helps and I wish you so much luck!

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!

@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.

@becsbuddy Thanks! I'll have to be treated for the rest of my life. Years ago, most doctors referred to me as a medical mystery because I never present or respond in a "normal" way. On one of my hospital visits, a nurse said that I was really a "unicorn"...a beautiful & rare creature that most doctors go through their whole career & never get to see it. I loved that description so I adopted it. Lol

@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.)

@phdresearchmama Welcome to Mayo Clinic Connect! Just wondering, though. You mentioned being on hydrocortisone and then tapering off some and then starting to take Adrenal Cortex while watching your weight. Was a doctor involved with your care and prescribing the medications? One rule on Mayo Clinic Connect is to not suggest that someone try a medication. Only physicians can prescribe medications.
So, again, Welcome to MCC! I’m sure you will find many topics of discussion that will interest you.

m (@mh10)
and to everybody with adrenal insufficiency:
May I suggest preparing for your next endocrinology visit with a few specific questions?
For example:
1. What adrenal test did I have? Was it a dexamethasone suppression test or an ACTH (cosyntropin) stimulation test?
2. What time of day was my blood drawn, and what were my exact cortisol results?
3. If I had an ACTH stimulation test, what was my cortisol level before the injection and at each measurement afterward?
4. Was my ACTH level measured at the same time as my cortisol? If so, was the ACTH low, normal, or high?

5. Since I have Graves’ disease, could there be an autoimmune connection, and have I been tested for 21-hydroxylase/adrenal antibodies?
6. If my low cortisol does not explain the weight gain, what other hormonal or metabolic causes should we investigate?

7. Do my results indicate primary adrenal insufficiency (a problem with the adrenal glands themselves) or secondary adrenal insufficiency (a problem involving the pituitary or hypothalamus)? In this case, an MRI would be the next step.

8. Is there a possibility to test and include 8-AM cortisol together with ACTH, sodium, potassium, glucose, renin, aldosterone, and adrenal/21-hydroxylase antibodies?

@becsbuddy Hello, and I apologize. This was my first comment on Mayo Clinic Connect. I didn't realize that was a rule. Next time I will stop with describing my own experience instead of making any suggestions. I certainly was not trying to prescribe. I only wanted to make the point that hydrocortisone can be difficult to go off of, in my experience it was more difficult than anticipated by myself or my doctor.

Yes, I was working with three doctors through this process. One who prescribed hydrocortisone in the first place, another who supported me going off of it but was surprised by how painful and difficult it was for me. And a naturopath (who happens to also be a "real" doctor and prescriber) who recommended Adrenal Cortex.

Anyway, sorry again. I'll stay in my lane. I really appreciate being able to read other people's experiences here.

@becsbuddy Hello,
You are very kind and thoughtful. Your experience reflects what so many people go through.

I’m now in a position where I need to reduce my hydrocortisone, but unfortunately, I don’t have the medical support I need. My endocrinology appointment is still eight months away, and my PCP doesn’t seem to recognize that skin thinning can be related to hydrocortisone use.

So I wrote a summary for him. Whether he will actually read it, I don’t know. But I need to find a safe way to reduce the hydrocortisone, with regular cortisol testing and appropriate monitoring, which he would need to order. I’m hoping that with careful monitoring, I can reduce the hydrocortisone safely and give my paper-thin skin a chance to recover.

Thin, Fragile Skin, Bruising and Slow Healing: Hydrocortisone/Glucocorticoid Effects and the Possible Relevance of sPRP and BPCP: https://swaresearch.blogspot.com/2026/08/thin-fragile-skin-bruising-and-slow.html

@swalex Thank you for your compliment!
As for your PCP, I think you’ll need to hold on to him until the hydrocortisone taper is complete. Maybe approach him again with your study AND a schedule of how you will taper off. You would ask him to help by getting blood samples at routine intervals. You might also think of writing up the scenario with photos of your thinning skin. Like an educational study. He would just have to see all the benefits for him. You writing up a program ( you already wrote up 1/2 of it), keeping an educated monitor on things and then writing a post-study ___________________. (Can’t think of the word)