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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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mayisgh | @mayisgh | Jun 6 1:16pm
In reply to @tinamarieh "I’m going through this exact same thing ! I get so very exhausted and every single..." + (show)
Profile picture for tinamarieh @tinamarieh

I’m going through this exact same thing ! I get so very exhausted and every single joint in my body hurts and my body aches. My cortisol levels came back low but yet I’ve gained about 20-25lbs in a short period of time and I also have issues with my hands aching , burning , and finger swelling . I don’t know if this is related ? I can’t seem to find anyone to help me and it also seems to worsen depression and anxiety.

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maybe it could be a neuropathy.

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kimlissa | @kimlissa | Aug 25 11:13am

Thank you for posting. Same issues. Thanks to you, I have a road map to follow now.

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pjbcorsi1955 | @pjbcorsi1955 | Aug 26 9:08am

Read Janie A Bowthorpe books on thyroid health. I see a functional doctor for deficiencies in vitamins/ minerals to support the thyroid. I have Hashimoto's

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againisay | @againisay | Aug 26 5:56pm

Sorry you are going through this. My journey is sorta similar. I have Graves, Type 1 diabetes and Thyroid eye disease. Are you on methamizole? I had lost a bunch of weight when me Graves stabilized but seem to be putting it right back on since my Methimazole dosage was increased.

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christineepadgett | @christineepadgett | Aug 30 2:30am

I am currently in this predicament, Graves, TED and all. Extremly frustrated.

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christineepadgett | @christineepadgett | Aug 30 6:36pm
In reply to @mh10 "YES somebody finally took the time to figure it out! It was the head dr at..." + (show)
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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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Can you please tell me if the medication worked?

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m | @mh10 | Aug 31 7:30am
In reply to @christineepadgett "Can you please tell me if the medication worked?" + (show)
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Can you please tell me if the medication worked?

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Genotropin

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dbetton | @dbetton | Sep 20 5:09am

Thank you for this! I am new to this group and I have this same issue. I watch my lab numbers for ACTH levels decrease each time I’m tested and one Dr tells me it’s nothing to be concerned about. The Endocrinologist wants me to take the hydrocortisone and says how serious it is and when I ask to get a second opinion he says it’s not that serious and they probably won’t call me for an appointment!?!?!?!? Exasperated is what I am at this point!!! What specific tests should I ask for and is there a specific doctor I should be seeing other than the endocrinologist ?

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John, Volunteer Mentor | @johnbishop | Sep 20 7:32am
In reply to @dbetton "Thank you for this! I am new to this group and I have this same issue...." + (show)
Profile picture for dbetton @dbetton

Thank you for this! I am new to this group and I have this same issue. I watch my lab numbers for ACTH levels decrease each time I’m tested and one Dr tells me it’s nothing to be concerned about. The Endocrinologist wants me to take the hydrocortisone and says how serious it is and when I ask to get a second opinion he says it’s not that serious and they probably won’t call me for an appointment!?!?!?!? Exasperated is what I am at this point!!! What specific tests should I ask for and is there a specific doctor I should be seeing other than the endocrinologist ?

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Welcome @dbetton, I think an endocrinologist is the specialist to see but I can understand why you are exasperated. I think if it were me and I couldn't get the endocrinologist to explain in layman's terms why he thinks it's not serious that I would seek a second opinion. I also wouldn't feel comfortable with an answer that seems to close the door on the discussion.

There are quite a few other discussions and comments on cortisol levels if you want to scan through them - https://connect.mayoclinic.org/search/discussions/?search=cortisol%20level.
Here's some information on ACTH that may be helpful for answer your questions - https://my.clevelandclinic.org/health/articles/23151-adrenocorticotropic-hormone-acth.

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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