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... :)
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