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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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jbradley0903 | @jbradley0903 | Dec 1 10:53am
In reply to @mh10 "YES somebody finally took the time to figure it out! It was the head dr at..." + (show)
@mh10

YES somebody finally took the time to figure it out! It was the head dr at the Endocrinology center that I went to that specializes in pituitary growth, hormone disorders. He did another stim test on me. And he said the reason my cortisol was low in my adrenal glands is because it was coming from the deficiency in my pituitary gland and that’s why I have the weight gain. He put into my insurance company a request for medication which is very expensive. It’s a growth hormone called genotropin. He also said there’s a good chance of insurance company is going to try to fight to pay for it because it’s so expensive, but I WAS approved.!!! I have not started it yet because the pharmacy is still processing it.
The doctor also said if your cortisol insufficient, it’s just from the adrenal glands that is called Addison’s disease and you will have weight loss. When you are experiencing weight gain, it is not coming from the adrenal glands as a primary source, the pituitary gland is causing that which is called Secondary adrenal insufficiency.
I just hope when I start taking that it works because I feel miserable right now and this weight gain is so depressing!!!
So if you’re having this problem, go to an Endocrinology Clinic and have them checked your pituitary gland!!

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I just read through this whole thread and THANK YOU for sharing your experiences and possible resolution. I have been to so many doctors over the last 2 years. So many blood draws, hormone panels, everything looks fine, maybe try taking vitamin D (heavy eye roll). I finally got in with an endocrinologist who gave me the overnight suppressions test (awakening response was very low but serum was normal, so again- nothing to be done). My levels were extremely low, but I have been struggling with weight gain when I’m not actively starving myself for years. I work out, I eat healthy and in high-protein macros, and if I don’t drop to 800 calories a day I just gain weight.

This has given me so much hope, and I feel like I can finally approach one of the doctors with a suggestion instead of dreading yet another telling me “wait and see”. Thank you!

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