1. < Autoimmune Diseases

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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 2, 2023
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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WOW @mh10 I’m so glad you got some help!! And I’m also glad it’s not an autoimmune disease! We go through these doctor hunts all the time. My insurance company also denied the doctor’s order or an infusion because of the cost, but after a second request, they agreed. Don’t lose hope! Be sure to stay in touch with us as you get better! Your experience will be a good model for others!

REPLY
dearley | @dearley | Sep 3, 2023

I was ill for two years w:extreme fatigue, skin hyperpigmentation, episodes of low back, leg & abdominal pain before being diagnosed w/full blown Addison’s Disease (adrenal insufficiency). The cause is said to be autoimmune. I just say that to let you know that I did NOT lose weight, if anything, I gained about 10 #.
Because that did not fit w/the weight loss symptom, I always figured it was from the food choices I made to fulfill the ‘extreme’ salt cravings I had (e.g. lots of Ramen Noodles, chips, etc.). That being said…you still will not be DX’d w/Addison’s unless your adrenals fail to respond to the ACTH Stimulation test.

Now…something to think about. You are not DX’d w/Addison’s Diseases until your adrenals are 90% nonfunctioning, so…in the interim, as your immune system continually attacks your adrenals, but they are 30, 50, 70% functioning, you get left undiagnosed. It’s sad, but true for many people.

But back to your weight gain question…I was 34 years old, I had never weighed over 125# in my life. At the time of DX, I weighed 134#.

I hope you get the answers you are seeking.

REPLY
dearley | @dearley | Sep 3, 2023
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!!

Jump to this post

May I asked the name of the facility, as well as the doctor that diagnosed you?
Thank you in advance!

REPLY
m | @mh10 | Sep 9, 2023

It was Metro Detroit Endocrinology Center, Dr. Alzohaili.
I haven’t been able to start the medication yet because apparently there is a shortage of the pen cartridge that is needed to administer the medication and this is only something I can get from Pfizer. This is ridiculous. The special Pharmacy give me the number of Pfizer so I can call them and see if I can get the pen so the pharmacy can send me out the medication. I was unsuccessful because I dealt with a very unfriendly woman on the phone at Pfizer and she just told me she don’t know when they’re going to get them back but they are out of stock. I guess they’re spending all their time making unlimited free Covid test and vaccines, and forgetting about and not caring of the manufacture other important medications. 🙄

REPLY
amybp | @amybp | Oct 19, 2023

I am curious if you ever got answers. They just finally checked my cortisol levels which are extremely low, but I’m gaining weight. I have EDS, HS disorder, POTS, Microscopic Colitis, diabetes, and a laundry list of diagnosis. Post cancer, BRCA1+, and my grandfather had adrenal cancer…. But am curious if you ever got any answers

REPLY
salkenyon | @salkenyon | Dec 5, 2023
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!!

Jump to this post

Hello @mh10
I read your posts about low cortisol and weight gain. I’ve been struggling with some health problems and most recently it finally came to a head.
My cortisol was low pluse aldosterone, testosterone, FSH/LH.
I’m a nurse and I knew enough to know it was endocrine related but I can’t find an Endocrinologist that will help me.
Can you share the contact info for the provider that diagnosed your pituitary problem?
I believe my problem is with my pituitary as well.
Any help would be greatly appreciated.

REPLY
1 reply
pjrockz88 | @pjrockz88 | Feb 29 11:11pm

I am having the same series of issues. I have a small frame and gaining so much so fast physically hurts. I will be following your story. Just received my low cortisol test results after begging the doctor for the test.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 2 9:41pm
In reply to @pjrockz88 "I am having the same series of issues. I have a small frame and gaining so..." + (show)
@pjrockz88

I am having the same series of issues. I have a small frame and gaining so much so fast physically hurts. I will be following your story. Just received my low cortisol test results after begging the doctor for the test.

Jump to this post

@pjrockz88 Welcome to Mayo Clinic Connect! We’re glad that you found us and hope that you will continue to participate. Let’s ask @dearly and @mh10 can return to the discussion and give you their helpful hints.
Can i ask how you found Connect?

REPLY
1 reply
m | @mh10 | Mar 3 8:54am
In reply to @becsbuddy "@pjrockz88 Welcome to Mayo Clinic Connect! We’re glad that you found us and hope that you..." + (show)
@becsbuddy

@pjrockz88 Welcome to Mayo Clinic Connect! We’re glad that you found us and hope that you will continue to participate. Let’s ask @dearly and @mh10 can return to the discussion and give you their helpful hints.
Can i ask how you found Connect?

Jump to this post

I’m sorry I thought I posted an update but I guess not . I finally was able to start the Genotropin at the end of October and I seemed to have more energy for just a little bit but didn’t feel quite normal. Around Christmas, it went back to square one (probably from overdoing it, and added stress). I just seen my doctor for a follow up a couple weeks ago and he increased my dosage and also I’ve been doing my own research because I am tired of living like this, so since February 11th I quit eating process foods altogether, and I started the carnivore diet which I have been researching and it’s supposed to heal auto immune diseases and so much more. Go to YouTube and search Jordan Peterson and his daughter (forgot her name) and the carnivore diet. It healed them. So I don’t know if it’s the increased dosage of the Genotropin and/or the carnivore diet but I am feeling so much better. And this is within a month. When starting off on the medication, they start at a certain dosage, and it has to be tweaked like any other.
My Endocrinologist told me he is the only doctor around that believes that growth hormone injections treat this disease. And he correct because I have been to many and had no answers or help. He is the head of the Metro Detroit Endocrinology Center in Dearborn Michigan. His name is Dr. Azohaili.
So if you live in Michigan, I would suggest make an appointment there. If you don’t live in Michigan, I would call around to different endocrinology centers in your area and ask if any of the doctors specialize in this. If not, I would make a trip up to Michigan. He is a lifesaver.

REPLY
mlee3580 | @mlee3580 | Apr 24 6:16pm
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!!

Jump to this post

I’m assuming you’re in MN since you mentioned U of M but would love to know who finally figured this out. I’m going through the same thing. Gained 50lbs in a year which is a lot when you were only 100lbs to begin with!

I see someone in endo. At the beginning of June but that’s just with Park Nicollet

REPLY
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