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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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jabreuva | @jabreuva | Sep 20 4:19pm
In reply to @mh10 "YES somebody finally took the time to figure it out! It was the head dr at..." + (show)
Profile picture for m @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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yes for last 5 years been thinking its high cortisol. had same exact symptoms as yours. had covid many times thinking wrecked havoc on my body.. Just i am getting worse with fatigued/malaise its unbearable and body muscle aches everywhere. Now added is i am dizzy every now and then and no explanation. I was thinking maybe HRT would help and went to gyn and they did blood test and sure enough my cortisol which i thought was high because of this crazy weight gain was very low. very interesting and happy i found this site. thank you for sharing your journey as I going to begin another one w this new information.

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casserole22 | @casserole22 | Sep 20 8:55pm

Have you had your insulin levels checked or looked into insulin resistance?

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ericalane402 | @ericalane402 | Oct 7 10:17am
In reply to @mh10 "YES somebody finally took the time to figure it out! It was the head dr at..." + (show)
Profile picture for m @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!!

Jump to this post

@mh10 I am definitely taking this article to my endocrinolgist. I have the same issues and have been gaining weight for years. I eat healthy and excercise and it seems like when i do this i still gain weight. My thyroid levels are all fine. I had to sit there and beg because i am still so fatigued and losing muscle strenth even though i was working out until my arms starting shooting pains in both upper muscles. She did a cortisol test on me and they are right on the low side. This is the first cortisol test i have ever had and she assumed they would be high because of my constant weight gain. So i am going in this thursday for a Stim test. I will bring this article and make her read it and go from there. Thing is I was recently very sick and was put on a steroid treatment. So that makes me think, "was i lower than this and the steroid treatment brought it up a little?" Thank you I hope you feel better on the medicine and lose weight.

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mandyust21 | @mandyust21 | Oct 17 11:26am

I have the same going on. Thyroid test all normal. I pd out of pocket for full hormone levels. I have low cortisol 4.0 taken at 1:00pm. I'm trying to get the ACTH test, but PCP is not sending over my bloodwork & notes. I have all the signs of Addison's Disease. Sounds like you do too. People die from Adrenal Crisis. I don't understand the whole medical field just letting people suffer. THIS IS AMERICA....

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1 reply
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mrsr1234 | @mrsr1234 | Oct 18 5:45am

Hey, I totally feel your frustration. I had to figure out (...on my own...) that I need to have my cortisol levels checked, re: all the symptoms x years. I'm an RN but should have a medical degree by now! I found a few articles, and while they may not have the 'answers' that we're looking for, I thought that they explained 'things' better than most docs do right now. Also, find a new endocrinologist. And if that one doesn't help you, find another one. I know it's a PIA, but if we do not advocate for ourselves, who will??? Best ...
https://www.urmc.rochester.edu/news/publications/health-matters/does-adrenal-fatigue-cause-weight-gain
https://www.drhagmeyer.com/adrenal-fatigue-weight-gain/

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htolan | @htolan | Oct 18 4:52pm
In reply to @mandyust21 "I have the same going on. Thyroid test all normal. I pd out of pocket for..." + (show)
Profile picture for mandyust21 @mandyust21

I have the same going on. Thyroid test all normal. I pd out of pocket for full hormone levels. I have low cortisol 4.0 taken at 1:00pm. I'm trying to get the ACTH test, but PCP is not sending over my bloodwork & notes. I have all the signs of Addison's Disease. Sounds like you do too. People die from Adrenal Crisis. I don't understand the whole medical field just letting people suffer. THIS IS AMERICA....

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@mandyust21 I am 72 , have had asthma for years and when I was younger they gave you tons of prednisone when your asthma got bad. In the ‘90’s I developed secondary Addison which is adrenal insufficiency. My adrenals don’t work. I finally gave up and simply take 5 mg of hydrocortisone a day to function. I haven’t gained any weight. My doctor says that that amount is close to what the body would make in a day. Mine tests at .4. I am doing okay .
I recently went through a 7 hour back surgery, had no problems and didn’t have to be infused with cortisol.
Good luck everyone!

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1 reply
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mandyust21 | @mandyust21 | Oct 18 8:29pm
In reply to @htolan "@mandyust21 I am 72 , have had asthma for years and when I was younger they..." + (show)
Profile picture for htolan @htolan

@mandyust21 I am 72 , have had asthma for years and when I was younger they gave you tons of prednisone when your asthma got bad. In the ‘90’s I developed secondary Addison which is adrenal insufficiency. My adrenals don’t work. I finally gave up and simply take 5 mg of hydrocortisone a day to function. I haven’t gained any weight. My doctor says that that amount is close to what the body would make in a day. Mine tests at .4. I am doing okay .
I recently went through a 7 hour back surgery, had no problems and didn’t have to be infused with cortisol.
Good luck everyone!

Jump to this post

I've only been taking prednisone since about Feb. Started at 10mg, went
down to 5mg. I've been sick for over 3yrs, before any prednisone. I took
Benzo's for along time, then was taken off cold turkey. I think this is
what started it all.

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bbanks80 | @bbanks80 | Oct 27 2:11pm
In reply to @flmommy2 "Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight..." + (show)
Profile picture for flmommy2 @flmommy2

Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight gain and no answers. I’m so miserable and nobody is doing anything to help

Jump to this post

@flmommy2 Hi flmommy2. I have been reading through this thread, because I have a lot of the same symptoms. I have a question for you though. How old are you? Is there a chance you are in perimenopause? It is actually AMAZING how much estrogen affects the body.

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Becky, Volunteer Mentor | @becsbuddy | Oct 27 8:05pm
In reply to @bbanks80 "@flmommy2 Hi flmommy2. I have been reading through this thread, because I have a lot of..." + (show)
Profile picture for bbanks80 @bbanks80

@flmommy2 Hi flmommy2. I have been reading through this thread, because I have a lot of the same symptoms. I have a question for you though. How old are you? Is there a chance you are in perimenopause? It is actually AMAZING how much estrogen affects the body.

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@bbanks80 Welcome to Mayo Clinic Connect! I’m so glad you found this site! May I ask, how did you find Mayo connect?
You said that you have many of the same symptoms—are you finding answers? Just ask a question of all the women who use MCC. I hope to see you around!

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karenjjames67 | @karenjjames67 | Nov 14 9:43pm
In reply to @flmommy2 "Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight..." + (show)
Profile picture for flmommy2 @flmommy2

Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight gain and no answers. I’m so miserable and nobody is doing anything to help

Jump to this post

@flmommy2
I am feeling just like this. Just got blood test done Cortisol is 1.0
Weight gain
Low Vit D
High WBC,MHC,LYM

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