CindyMy son was diagnosed with salt-wasting CAH (21-hydroxylase deficiency) at 2 weeks of age after experiencing symptoms of lethargy, weight loss and vomiting (no newborn screening for CAH here in Utah). His 17-OHP was 657 ng/ml so I guess that would be 65,700ng/dl (is that right?). At any rate, he was a very sick little boy. Two weeks later (after treatment, of course) it was 0.95 ng/ml.
He has been well-controlled most of his life (he is now 3) except once when we reduced his florinef too much and the 17-OHP went up to 324.6 ng/ml (32,460ng/dl). At that time he seemed to be sick a lot and just wasn’t himself. When we increased the florinef again things went back to normal. I think we tested him about 3 weeks later and his levels were normal.
My doctor goes by the androstenidione more than the 17-OHP to adjust the cortef dose. He thinks it gives a more long-term picture of what is going on. We test androstenidione, 17-OHP, & plasma renin every 3 months. (More often if there is a problem or a medication change).
I hope that helps....