I recently had the IPSS because all of my tests for cortisol come back high, and the dex supp test did not suppress at low dose but did supress at high dose. IPSS results all came back low, suggesting adrenal, tho. CT of adrenals looks normal. If my cortisol is high but the IPSS results are low and the adrenals look fine, what else could be causing the high cortisol?
Thank you, your time and attention to this means a lot to me.
I can tell you from experience (and you can google or use your favorite search engine for this - there are papers on it) - imaging on the adrenals is a bit less than perfect. I had at least one CT before my surgery and the day before my surgery that said my adrenals were normal - removal proved that mine were 2x normal size. I have friends who have had theirs removed (and not just in the USA) who have had the same experience and some were even larger than mine. Even worse - a few of us (including me) had CTs after the surgery and found to have normal adrenals AFTER removal.
As for sources - alas, it can be the pituitary, the adrenals or it can be ectopic. I know in my case, my tests all pointed to adrenal - but I had pituitary so it can really be unclear. Pituitary tumors can be teeny and still toss off an adrenal tumor. Suppression more points to a pituitary source and that you did not at a low dose is actually pretty good for an adrenal source.
The IPSS is a pretty good test of location if you have had imaging that did not show a lesion (I am assuming your pituitary MRI - and I hope you had a really good dynamic one came back clean?).
Do you get copies of your labs - how is your ACTH? If adrenal, your ACTH should be on the higher side as the pituitary should be trying harder to signal the adrenals. ACTH though is a super fussy test - so a chilled tube, spun right after the draw and then prompt freezing is a good test - anything other - in particular if the tech drops it in the bin - you are sunk as the test will come out lower just for handing. That will also indicate location to an extent. Now a super high ACTH can indicate ectopic but you have to get really accurate testing.
I had the IPSS too - ah the lovely trim job you get... :)
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.