I've been back in the states for a couple of weeks now. I just got my blood work results back and my ACTH levels are up to 310. 6 months ago they were 214
My morning cortisol was 21.2 to (a little high) the high range was 19
I've been to 2 endocrinologist in the past and the have no answer for me, this is when it was high but lower then now.
Does anyone have knowledge on high ACTH?
I giigled but would like some real world experience.
Thanks
Written by
deengo
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I raised this question on an Addisonian board because of the uncertainty of the fluctuations of my ACTH levels. For the past 9 ACTH readings, my levels were a High 905 and
Low 98. My last test result was 401. Most endos have a knee jerk reaction and that is to increase your cortisone which can be harmful. Since I already have osteoporosis, I was concerned about this. My understanding is that the test is only a snapshot in time of your ACTH levels. This will vary as to when you take your cortisone and take the test. I copied a response to a comment concerning ACTH levels:
Ur endo should not be trying to normalize ur ACTH for those with PAI or otherwise u will have excessive weight gain .
I came across a good paper saying patients with PAI should have ACTH 3-4 times normal so ACTH of 112 would indicate excessive replacement and may account for ur weight gain.
Mult factors play in, timing of draw relative to doses, etc.
ACTH is accurate since it only reflects levels at the time of draw.
Checking the ACTH level is finding out if the body is satisfied or is hollering for more cortisol. Depending on how fast your body gets the replacement cortisol into the blood stream and how fast it metabolizes it (gets rid of it), will determine how much ACTH the body thinks it still needs. The blood test is just a snapshot in time. It doesn't indicate whether the level of ACTH at the time of the blood test is on its way up or down so a variation of time that sounds insignificant might make a big difference in the level of ACTH.
I think you should send the paper below to your endo.
As you can see it takes several hours for the ACTH level to drop after a dose of glucocorticoid. The authors suggest that a single cortisol test can be used to assure adequate replacement. Thier data also suggests that increasing the glucocorticoid dose had little effect on the rate ACTH falls .
I take 5 mg prednisone which has an intermediate half life and is converted to 20 mg of hydrocortisone which has a short half life.
Thanks for the very informative reply. I saw my endocrinologist this last week and she wasn't concerned about anything. She said a ACTH hit test wouldnt show anything because my cortisol levels are already high, maybe because of the high ACTH.
She did prescribe hydrocortisone (20mg) for emergency purposes, like if I had a attack like I did in the Philippines.
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