Good afternoon, everyone! I have an interesting situation, and I would appreciate your thoughts and insight.
When I was first diagnosed with primary adrenal insufficiency, my ACTH levels were found to be very high, in the 9000 pg/mL range. The endocrinologist that I originally saw started me on 10 mg of hydrocortisone (HC) in the morning, and 10 mg of HC at night. A few months later, my ACTH levels were found to have decreased to around 700 pg/mL, but the endocrinologist had me increase my dosage to 20 mg HC in AM, and 10 mg HC in PM. At one point about a year ago, my ACTH levels measured as low as 72 pg/mL, which is just above the normal range.
In February of this year, my ACTH levels were found to have gone back up to 1,800 pg/mL. As a result of this test, my former endocrinologist then had me increase my HC dosage to 20 mg AM, and 20 mg PM, and added fludrocortisone 0.1 mg daily. When more blood work a month later found my ACTH levels to still be in the 1,800 pg/mL range, my former endocrinologist had me increase HC dosage yet again, to 40 mg AM, and 20 mg PM. At this point I emailed him asking if this high of a dosage could have negative effects in the future, such as osteoporosis or cataracts. He replied tersely, saying that I shouldn't worry about that, and that my HC dosage needed to be as high as necessary to bring down my ACTH levels. The implication was that a high ACTH could kill a person with adrenal insufficiency.
Due to a change in my wife's and my insurance coverage, I decided to switch providers, and saw a new endocrinologist a few weeks ago. She was somewhat shocked to learn that my former endocrinologist had continually ramped up my HC dosage every time he found my ACTH levels to be higher than a normal range. She told me what was most important was that I was receiving enough steroid replacement, and that my ACTH levels may never come down to a normal range again. She also stated that to her knowledge, a high ACTH level on its own is not dangerous. My ACTH levels most recently measured at 1,080 pg/mL a week and a half ago. The new endocrinologist's recommendation now is to slowly taper down my HC dosage over several weeks, ending up back at a maintenance dosage of 20 mg AM, and 10 mg PM.
I wonder how two specialists in managing Addison's disease or primary adrenal insufficiency can have such opposing recommendations. For those of you with adrenal insufficiency, have you found your ACTH levels to still be significantly above normal, despite steroid replacement? Have the endocrinologists that you have seen been concerned about a continued high ACTH level? Have they ever stated that a high ACTH level alone could be dangerous to your health?
Thank you for your replies. Perhaps this could spark another discussion on what to do when our doctors contradict each other. I hope that you are all doing well.