Cortisol deficiency, but with weight gain

Posted by m @mh10, Jul 10, 2023

Has anybody experienced unexplained weight gain when your cortisol levels are low? I recently had a two day stem test, which resulted with low cortisol levels that my adrenal glands are not producing correctly.. but I have unexplained weight gain. Usually when your cortisol levels are low, you lose weight.
I went back to all my test results from 2016 when I started to gain weight and feel drained and just sick. They gave me so many tests, and they claimed everything was normal. I did not have MyChart at the time, so I never could see the test results until recently when I scrolled all the way back to that time and seen my cortisol levels were extremely low. I don’t understand why nothing was ever done.

Last year, I started getting the same exhaustion and fatigue and weight gain for no reason and then I got Covid at the beginning of this year and then everything became severe. 24/7. That’s when I went back to the endocrinologist and thought it was my thyroid because I do have Graves’ disease, which is supposed to be in remission right now, but they said everything looked good in the normal levels, except my cortisol levels were low for that time of day and that’s when I took the stem test.
When I ask why I’m gaining weight, nobody knows. They want me to take steroids for the low cortisol levels, but I know I’m going to blow up once I start taking them.
I am also having muscle and joint pain and weakness in my whole body which I think might be related, but I don’t know… I just know I’m getting very frustrated.
Does anybody know or have any autoimmune disease that causes low cortisol levels, but unexplained weight gain instead of weight loss with fatigue and muscle and joint pain?
I’m getting tired of going from doctor to doctor when all they do is take blood tests and come into the room for less than five minutes to say blood tests are fine, nothings wrong. Ughhhhh I need answers!!!

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@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)

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@becsbuddy
Thank you.
My biggest problem is that my PCP is unwilling to order cortisol testing, even though I have to pay for it out of pocket.

You’re right about the importance of documenting this, and I’ll collect dated photos of my fragile skin as it hopefully recovers.

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