I have been tested for cushings since I have a history of a pituitary microadenoma, weight gain, facial acne and rosacea, begining of a hump, headaches and facial hair... The ACTH baseline was at 60 but when supressed it was all normal. A CRH test was done and my endo says he ruled out a tumor in any other part of my body that I still have a small maybe 3mm pituitary microadenoma. My last MRI was not showing my 5mm microadenoma that was found in 1987 and 1992. :-(
I would find another doctor. Let me explain it to you like this.
The pituitary puts out ACTH and that in turn signals the adrenal to put out cortisol. The pituitary senses the amount of cortisol and from there, can either reduce or increase the amount of ACTH depending on what is needed. Hormones work is what is called feedback loops - most all of them do.
Dexamethasone takes away the signal - then think - the pituitary is now cut out of the loop and thus the adrenal is the issue if the result is high.
If the adrenal fails to put out anything on dex, then the tumor is not on the adrenal - it would be pituitary source.
So a suppressed dex test should be a test of location, not a test of exclusion! The test actually confirmed the pituitary tumor as the issue, not told the doctor that you did not have a problem. However, doctors that are not skilled in Cushing's use the test as a test of exclusion.
As long as you have symptoms, you should get adequate testing. Even the new guidelines say 3 tests that differ - so you should get more testing anyway and more if there is clinical suspicion. Is your endo a regular endo that does mostly diabetes or a pituitary endo?
I would contact a neuro-endo at a pituitary center. It may take a while (it took me over 12 years as well...) but your doc is being an endiot.
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