Dear CKL,

With a CAH patient, cortisol levels are normally not used to make a decision on adjusting medication, once the diagnosis is made. It is because---since CAH patients don’t naturally produce cortisol---levels of cortisol detected are merely a reflection of how much medication is left in the body. That information is not as useful as knowing what EFFECT the hydrocortisone medication has been on the adrenal hormone levels.

In your son’s case, yes--the cortisol levels are low in the morning. But that is to be expected because his medication has generally gone out of his system during the course of the night. His adrenal hormone levels are also generally low. That shows that his medication is having the intended effect.

To make decisions about medication adjustments, a doctor generally looks at the levels of 17-ohp, androstenedione, and testosterone. Your son’s levels generally showed that he was well suppressed.
In my opinion, most peds. endos would probably have looked at them and decided to either 1) keep the medication dose, as is, or 2) reduce dose slightly.

Again--yes--the cortisol is important in establishing the initial diagnosis, but once diagnosis is confirmed, it is generally not considered to be that informative. Most doctos do not regularly measure it, as part of regular monitoring of treatment.

Hope this helps answer your question.

Best Regards,
Carol

P. S. I am sorry I am just responding now. I do not get the chance to read the message board as much as I used to, so often miss a lot of stuff and have to play "catch up."