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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jbradley0903 | @jbradley0903 | Dec 1, 2024
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 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!

REPLY
tsalston | @tsalston | Mar 20 7:47am
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 can't not thank you enough for the post!! It has been such a struggle getting docs to see or understand what I am feeling. This post changed everything for me!! I am scheduling an appt with an Endocrinologist today. God bless you!!

REPLY
tsalston | @tsalston | Mar 20 8:00am
In reply to @mh10 "I’m sorry I thought I posted an update but I guess not . I finally was..." + (show)
@mh10

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.

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I am so happy for you. Jordan Peterson's daughter name is Mikhaila.

REPLY
abigaildbaeza | @abigaildbaeza | 3 days ago
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

Has the Genotropin helped you lose weight ? I have the EXACT same issue, I have extremely low cortisol but I gained so much weight and I can’t lose any of it? I’ve done more cardio, strict diet, weightlifting, keto, NOTHING is working. I hope you see this 🙁

REPLY
baciobabe | @baciobabe | 2 days ago

I don’t know if my cortisol levels have been checked, I will need to look through all my crazy blood work. It has been since COVID and I got so sedentary that I thought the weight was from that but it just keeps coming on. If one more person blames it on my age I’m going to scream! I went from 117 to 180 since 2020 but now I go back and forth with “slight” anemia, rheumatoid factor “low” but pain and fatigue high. I struggle to stay awake most days. I’m exercising off and on through the day. Seeing a physical therapist for my knee but she’s not too intense although I’ve noticed some improvement. People don’t want to hear how shitty you feel and how frustrated I am so it makes me feel pretty isolated. Photos then & now 😵‍💫
REPLY
1 reply
abigaildbaeza | @abigaildbaeza | 2 days ago
In reply to @baciobabe "I don’t know if my cortisol levels have been checked, I will need to look through..." + (show)
@baciobabe

I don’t know if my cortisol levels have been checked, I will need to look through all my crazy blood work. It has been since COVID and I got so sedentary that I thought the weight was from that but it just keeps coming on. If one more person blames it on my age I’m going to scream! I went from 117 to 180 since 2020 but now I go back and forth with “slight” anemia, rheumatoid factor “low” but pain and fatigue high. I struggle to stay awake most days. I’m exercising off and on through the day. Seeing a physical therapist for my knee but she’s not too intense although I’ve noticed some improvement. People don’t want to hear how shitty you feel and how frustrated I am so it makes me feel pretty isolated. Photos then & now 😵‍💫

Jump to this post

I’m so sorry you’re going through this. It’s hard to find doctors who will just listen, they all say the same thing but no one cares to actually dive deeper into the ROOT cause. It shouldn’t be this difficult to lose weight. People make it sound so easy. Just eat less and workout more! I wish it was that freaking easy!! It makes me feel pretty isolated too, I had to cry in my closet the other day because none of my clothes fits me the way it used to. But nothing in my diet or workout routine has changed !

REPLY
1 reply
baciobabe | @baciobabe | 2 days ago
In reply to @abigaildbaeza "I’m so sorry you’re going through this. It’s hard to find doctors who will just listen,..." + (show)
@abigaildbaeza

I’m so sorry you’re going through this. It’s hard to find doctors who will just listen, they all say the same thing but no one cares to actually dive deeper into the ROOT cause. It shouldn’t be this difficult to lose weight. People make it sound so easy. Just eat less and workout more! I wish it was that freaking easy!! It makes me feel pretty isolated too, I had to cry in my closet the other day because none of my clothes fits me the way it used to. But nothing in my diet or workout routine has changed !

Jump to this post

I feel ya. I’m starting to record my food in fitness pal, maybe you can help me to be accountable. The main purpose is to illustrate to my doc. I had some kind of seizure last September and like I said, fall asleep without notice and so now they’re saying maybe it’s sleep apnea. Sure I have it because I gained weight but why! My legs and toes spaz out and sometimes my hands. The neurologist checks me for carpal tunnel, yes I have that too but it’s not giving me a seizure where I lay on the floor and every muscle inside and out is wrenching. I’m taking a bunch of gabapentin and arthritis pills and that helps the fire under my skin.

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