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High cortisol high ACTH
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High cortisol high ACTH

34 year old male just had a pheochromocytma tumor removed two months ago and I'm still having blood pressure and arrythmias .

Did 8am cortisol and it was 19.5 range was to 19.4

ACTH was 161 top of range was 63

None of these doctors can tell me what's going on so I figured to try here. Please help me out if u can

What's my next step
3 Comments Post a Comment
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657231_tn?1390151580
What type of doctor did you see?

While the cortisol is was just a bit over, the ACTH is pretty high. It can indicate Cushing's - but there is no one test for Cushing's and so it takes several sets of testing as well as several types of testing. Also a silly doctor will do a dex suppression test and if you fail that (by suppressing) may say you are ok and not test you any more.

Lots of Cushing's symptoms overlap with a pheo - did you get copies of your testing for the pheo? And a copy of the pathology from the surgery?

Is your endo a neuro-endo?
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Avatar_m_tn
yes got copies of pathology report , and testing , had 2 ct scans , octreoscan and mibg scan , all showed on adrenal gland , had a 1.3cm bloody pheo taken out 4/23/12 , guess it was about to burst .

the surgeon called me today and said bloodwork was fine and my other endocrine specialist thinks i might have another tumor  and mens syndrome maybe . hate doctors , these guys work togather and they tell me the exact opposite
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657231_tn?1390151580
I would not, as a layman and a former battler of Cushing's myself, see your testing as fine - but ah, I was told that many a time. They were wrong.

I would contact a pituitary center and get the testing that you need. Take the stuff that you have and get what you need as far as testing. MEN is pretty difficult to test for - there are many types (and sub-types) so easier to prove with family history on your side - so it would help to compile a family health history of those with endocrine tumors - specifically pituitary, pancreatic, adrenal, thyroid, parathyroid are more interesting to them - and that data can help pinpoint what to test for or just diagnose you. (I laughingly tell them I have MEN-JEN - my name being Jennifer - as I have has pituitary, thyroid adrenal and ovarian issues - but they won't test me for MEN even though I am hypo para, hypopit etc)...

It takes a lot of testing to determine the issue - so be patient and keep us posted. The health pages below (or to the side - they keep moving...) should help.
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