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Cushing's and Autonomic Nervous System Disorder (ANS)
I think I've had Cushing's for at least 5 or 6 years. I was diagnosed a year ago. My ACTH was high which led to a pituitary surgery. My ACTH dropped but cortisol didn't. After the surgery I was told that the surgeon couldn't find the tumor. My cortisol have decreased slowly but not all the way. Nobody really understands what's going on with me. I may start taking cortisol-lowering medications soon. Also, 2 years ago I was diagnosed with an orthostatic hypotension, which is an autonomic nervous system disorder. I really feel terrible most of the time. I looked on different AI websites and they all say that Cushing's can affect the ANS. I asked 2 endocrinologists about it and they denied that high cortisol affects the nervous system. I hope that eventually when my cortisol is under control my orthostatic hypotension. Did anyone experience the same?
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Sorry, correcting my statement. I meant to say that I hope that eventually when my cortisol is under control my orthostatic hypotension will improve.
Hello. I'm familiar with Cushing's syndrome; I've read a lot about it because my wife had it. I suggest you continue searching for an endocrinologist. You need to find the cause of the elevated ACTH and cortisol levels. Please be persistent. If there wasn't a tumor in the pituitary gland, you need to find the source of the problem. Perhaps you could talk to an endocrinologist about a dexamethasone challenge test to start with. If the endocrinologist is good, they'll know what they're talking about. Best of luck.
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I have not had your experience, but I also had Cushing's for 5-6 years. In 2015, I had a pituitary tumor removed. All returned to normal. In the fall of 2025, I was diagnosed with a recurrence, but the suspected tumor did not show on the MRI. So my endocrinologist put me on Isturisa to reduce my cortisol levels. The medication lowered my blood pressure, but the lower pressure was not from the disease.
Having dealt with Cushing's twice, I know that my endocrinologists have done lots of testing and different types, and then repeated it a couple more times to make sure the results are consistent. I agree with the previous response. I would recommend that you talk to your endocrinologist about other testing and/or see another one for another opinion. Good luck.
Hello @hope2457 Im sorry to hear about what you are experiencing. I was treated with pit surgery in 2020. If you were treated at Mayo, I am surprised that you were told that Cushing’s does not impact the nervous system. We know there are plenty of emotional changes to us as Cushing’s patients, but there can also be physical changes to our brain. Published article link:
https://onlinelibrary.wiley.com/doi/10.1111/jne.13466
Agreed to keep finding an endo who will try more to locate the source and cause for the elevated cortisol even though your ACTH levels went down. Perhaps there could be an adrenal tumor or other ectopic location. Wishing you well in your journey!
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