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Hello, I have cushing syndrome and my cortisol levels are pretty much none existant does anyone else have this issue? Of so how iz it being treated?
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That’s definitely not something we hear every day! When you were diagnosed did you have high cortisol? Or when you say you have the syndrome, do you mean you have the collection of symptoms but when you get tested your cortisol is very low? Which cortisol test is that?
A member sent in her story several years ago about having all the symptoms but coming up short when it came to getting a diagnosis because no tumor showed on scans and the testing was inconsistent. Somewhere in all that she went for a sleep study test and turned out she had sleep apnea. Once she started using the cpap machine, her symptoms resolved. Waking up multiple times at night was “triggering” her body to make excess cortisol all night, so even though she was exhausted when she woke up and would have low morning blood tests, this turned out to be the source of her hypercortisolism.
A patient taking cortisol blocking and replacement meds might not have skewed cortisol results.
But under most circumstances, a patient is not going to have Cushing’s and adrenal insufficiency at the same time.