Cortisol deficiency, but with weight gain

No, I’m in Michigan.
I got ACTH stimulation testa.
That’s how I knew it was coming from the pituitary gland, which was making me gain weight instead of losing weight.
Have your cortisol checked first. Then you will have to find a place that will do that because the doctors these days are useless and you have to research to find a good one.

Welcome to Mayo Clinic Connect. Agreat place to connect with folks who have had similar experiences.

@mlee3580 Welcome to Mayo Clinic Connect! I’m so glad you found this site. Everyone is so helpful and will answer your questions and give helpful advice. Can I ask what brought you to Mayo Clinic Connect and how you found us?

Hi, I just googled my symptoms and this page appeared!

Your low cortisol levels are likely from the autoimmune disease Addisons disease, where you have antibodies attacking your adrenal glands. Many people with one autoimmune condition have others. If you were diagnosed with Graves’ disease, that is autoimmune and is the first phase of Hashimoto’s thyroiditis. That phase lasts about 1-2 years, then turns into hypothyroidism as the antibodies destroy your thyroid gland. That could be why you are gaining weight. Both low thyroid and low cortisol cause extreme fatigue. I would make sure your endocrinologist checks your thyroid function and anti thyroid antibodies to see where you stand. You may need thyroid hormones as well as the steroids for the low adrenal function. These 2 conditions are treatable and once stabilized on adequate doses of hormone replacement, you should feel much better and weight should return to normal. Please let us know how you do going forward.

This sounds very similar to what my 18 year old daughter is going through. She has Behcet’s (diagnosed in 2017). She recently had a sudden syncope episode on 1/24/24 and since has had weight gain and severe weakness. Cortisol and ACTH are critically low so they diagnosed her with central adrenal insufficiency and started her on steroids. The steroids haven’t helped and have just made the weight gain worse. She still has all the fatigue and weakness, plus the negative side effects of the steroids. They can’t find a cause for the central adrenal insufficiency. She’s had 2 MRI’s in the past 3 months and both are normal. She feels terrible and we aren’t getting any answers. She has several specialists at UNC medical center including an endocrinologist. We did just send all of her records for an evaluation at Mayo Clinic in Minnesota and I’m waiting to hear back.

@sarah0906 Welcome to Mayo Clinic Connect! I’m sure that you’ll find some other members who have had symptoms like your daughter so they can give you information and tips.
I’m glad to read that you’ve sent all of her records into Mayo Clinic. Just so you know, Mayo Clinic is more than busy so they may determine that the care at UNC is more than adequate and turn you down for an onsite visit. It’s very disappointing, but you can ask your doctors to work with Mayo Clinic. Here’s hoping that your daughter gets the appointment!

@mh10 Is the new medication helping??? Curious as this is the exact same scenario as my daughter. The cause for her low cortisol is her pituitary gland and she’s had fast weight gain.

Hello! I had been seeing an Endocrinologist for about 10 years due to being told I have an adrenal adenoma. Over the years, he continued to run only a handful of tests and even though they were showing abnormalities, he always said they were within normal range. I have packed on 50 pounds over the years and am the poster child for what someone looks like that has Cushings disease. I have every single symptom for the disease. Yet when I asked him, he said no, that was not it. For about three years now I have been suffering back pain on the right side (that is the side that the adenoma is) that has me in agony most days. I have recently gone to a new Endo who is much younger and she sent me for a battery of tests, most all of which he has never ordered. The result for my ACTH, plasma is < 1.5, cortisol 4.4 and Dhea 13.1 apparently all are out of sorts. It took three weeks for the results to come through
and I literally just looked at them. So I have no idea what the Doctor's take is on all of this.

I do have many health issues, the adenoma, thyroid nodules, lung nodules, high blood pressure, high cholesterol, high triglycerides, you name it. I use to be very physically fit and active and now I just feel absolutely horrible. I will definitely see what the doc has to say about the potential for the pituitary possibly being part of the problem and so appreciate yours and everyone else's comments. As sad as it is to know many others have similar problems, it is comforting to know I am far from alone.

Could you please post an update since it appears your last post was from two months ago. I truly hope you have found some relief!

Best to you!
T

@terinez
Soooooo glad you have gone to a new doctor! Well done!
Hope you get the answers and direction you need.
Wishing you all the best.
Let us know how you progress.