ACTH numbers?

[Seifert_09]

I would like to know what the collective levels of ACTH are . When I first started seeing my endocrinologist my numbers were 103,193,196. This when I started my daily hydrocortisone regimen . I take 20mg right when I rise and then 10mg @ 1. The lowest I was able to get my ACTH was 28 once. Now I am at usual 80-85. Now mind you the normal level is 0-46. This high level I’ve gotta think plays a big part of why my moods are all over the place. So my question to the group is what kind of success and struggles have you had when it comes to taking hydrocortisone and the like. Thanks again in advance !

[Aaron98]

My ACTH levels were over 9000 pg/mL before diagnosis. That seems exceptionally high, and I have never personally heard of anyone having higher levels than that. They once got down to about 70 or 80 pg/mL. In the last year, I've had a few blood tests, and the levels average around 1200 to 2000 pg/mL currently. This is with a daily dosage of hydrocortisone between 25 - 30 mg.

My current endocrinologist tells me that high ACTH levels in and of themselves are not dangerous, and that we do not alter steroid replacement therapy dosage based on those levels. This goes against what other endos have told me in the past, so who knows?

I've asked for both a 24 hour cortisol profile blood test and an 8 hour day curve cortisol blood test, and been denied both. I understand that these are standard tests in the UK when someone is diagnosed with adrenal disease. The standards of care for those with adrenal insufficiency in the US are pretty pathetic.

Anyways, hope this information is helpful. Happy New Year!

[SongStream]

My ACTH levels have varied from 50 pg/mL (where normal is <=46 pg/mL) to 905. I have my blood drawn in the morning usually after 90 minutes after my morning prednisone (5 mg which is equal to 20 mg of hydrocortisone). My endo's M.O. is to increase my dosage to lower my ACTH levels which is concerning as I already have osteoporosis and need to curb any further risks. Like Aaron, I too have questioned about the 24 hour cortisol profile blood test for a more accurate account but was easily dismissed. My question on ACTH was raised on my fatigue complaint.