Within the last year, I moved to a different area of the state and have had to completely change my doctors, labs, etc. I have had 3 ACTH test run during the past 9 months. Each time, my level is way above the range of 5-27 - mine has been over 100 each time with the most recent being 168.

I feel fine - have no other health problems, and my endo says as long as I feel ok, she isn't too worried about the levels.

Have any of you had this problem?

Judy

Did he also test your cortisol? Even though you may be feeling fine - it should be investigated. Different people have different tolerences and the end result is that is that the cortisol will damage your body. Find a pituitary specialist.

My cortisol level is not listed on my last two lab print-outs. Tomorrow, I plan to call the endo in Austin who originally diagnosed me in '87 - he is the best, so maybe he can give me some advice also.

Thanks for responding,

Judy

ACTH by itself is not diagnostic. You need to have the cortisol - as the ACTH tells the adrenal glands to secrete cortisol. So depending on the level of cortisol, you see where the problem is - but, as I found out, it is not fool proof as I had normal ACTH and I had pituitary Cushing's but the usual way is as follows:

Cushing's disease (pituitary tumor making ACTH)
Cortisol High
ACTH High

Adrenal tumor
Cortisol High
ACTH Low

"Ectopic" ACTH (ACTH made by a tumor outside the pituitary, usually in the lung)
Cortisol High
ACTH High

Addison's disease (adrenal damage)
Cortisol Low
ACTH High

Hypopituitarism
Cortisol Low
ACTH Low

Because there can be exceptions, you need an experienced doc... but and ACTH of 100 should not be ignored especially since most labs do not perform the test accurately (chilled lavendar toped tube, promptly spun, frozen immediately) and ACTH degrades within minutes at room temperature thus making your results lower than they really are. So if your tub was tossed in a bin, your ACTH was probably much higher. Always get copies of your tests before you leave the office and next time you get your ACTH done, pester to spin and freeze immediately, do it at 8am, and be fasting.