Cortisol deficiency, but with weight gain

Hi @mh10, I know it can be frustrating when you can't find any answers and you are struggling to manage day to day. You mentioned exhaustion and fatigue along with the unexplained weight gain. Here's some information on the topic that might be helpful.
--- Unexplained Weight Gain and Fatigue: Underlying Conditions: https://www.verywellhealth.com/unexplained-weight-gain-fatigue-5115526

Have you thought about seeking help or a second opinion at a teaching hospital or major health facility?

One of my Endocrinologist is a U of M doctor and she don’t understand why my cortisol levels are low and I’m gaining weight either. I have another Endocrinologist (not U of M) that had actually did the stem test and is the one that wants me on steroids. But she doesn’t know why I’m gaining weight either.

When I went back through my charts to look at my tests I had seen a U of M doctor back in 2016 and my cortisol levels were so low that they were flagged in my chart and that’s why I don’t understand why that doctor never did anything either, and that’s supposed to be one of the best hospitals in the country. 🤔

I actually have all the symptoms of Hashimoto’s disease, but because my thyroid levels are in the normal range, even though it may be towards the border of those normal ranges, they will not even consider it… any of the doctors. My right side of my thyroid is also enlarged but because there’s no nodules there they will not look into that further. I just don’t know what to do because it’s like if your blood tests don’t show it then they don’t try to figure out what’s wrong with you. I should’ve became a doctor because it seems like all they have to do is order test and look at them and see their patients for five minutes and if the blood test does not show anything then they say there’s nothing wrong and go home. SMH

I have Hashimoto’s. Be sure you are taking your thyroid meds as prescribed. And on the day of a test for your thyroid ask your doctor if you should or should not take your thyroid meds that morning of the bloodwork. Also do you take any supplements with the thyroid meds at the same time that can interfere with accurate test results.
And I know it’s exhausting seeing doctor after doctor but seek out a THE specialist in thyroid disease in the country. If it’s difficult getting to them, perhaps they may be willing to consult with you via zoom or over the phone to look at your test results and history and give you some advice.
Best to you.

I’m not on thyroid meds right now because my Graves Disease is in remission.
I’m actually in the waiting room right at this time waiting to see another endocrinologist specializing in the pituitary gland.
I’m not getting my hopes up that they’re going to figure anything out today, I lost faith… 🤷‍♀️

Thank you for letting me know. Hope your appointment goes well. Let us all know.

Have you ever had tests to look for antibodies? I ask because you mentioned that much of your symptoms worsened after Covid. I developed antiphospholipid syndrome (clotting disorder), as well as Sjogren's from either Covid or the vaccine, and some of your symptoms sound similar to Sjogren's. Just a thought, and I hope you find answers.

I just now read your challenging post. I was sleeping all day and all night, craving salt and loosing all body hair underarms and legs. Old doc Brushed it off. Left his practice and went to new doc. She checked cortisol and sent me to endocrinologist who did further test. Sure enough I have acquired adrenal insufficiency. And I am overweight by a lot! Guess we all don't fit in the same category that medecine wants to put us in.
I was put on steroids and was worried about gaining more weight too. But the Dr. said the prednisone is just replacing what's missing. Since it's not extra prednisone it won't cause the same side effects that normally occur.
I have to carry an injectable kit with me at all times and wear a bracelet because if i get sick or have any procedures done the amount gets increased.
I hope this helps in some way. I also have connective tissue disease and fibromyalgia so my pain is still present and I'm still exhausted most days but I'm not sleeping all day anymore. Not even a nap. So the prednisone has helped and I gained maybe 5 lbs. which could be from anything. I've been on the medication for over a year now. I don't believe this is an autoimmune condition which is why my rheumatologist never discovered it. It's an endocrine problem.
Best of luck to you. I know how frustrating it is to get these things figured out. Keep at it and follow your instincts.

I’m in super similar situation. Also have Graves, numbers look fine except low cortisol and high platelets and FAST unexplained weight gain.
Are you on any meds where that is a side effect?

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

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!!