Hi Julia,

You are talking about normal values and Val is talking about CAH-acceptable values.  Our children shouldn't have "normal" 17-OHP results.  If they do, it is a sign of oversuppression.  I've seen many opinions about CAH-acceptable 17-OHP values, and they differ considerably.  1195 ng/dl is on the high side, but not scary.  Stress in the moments before and during the blood draw can cause a very elevated 17-OHP.  It does not have the same immediate effect on the testosterone or androstenedione.

Personally, I've lost confidence in serum 17-OHP results for my girls.  We have switched to 24-hour urine testing for a more complete picture.  The last time we did both blood and urine testing in the same 24 hours will give you an idea why.  My younger daughter's 17-ohp was 1800 ng/dl, which in itself would have indicated undersuppression and prompted a dose increase.  Her testosterone was 0.02 ng/ml (reference range 0.08-8.0 ng/ml), which is below normal and definitely wouldn’t indicate undersuppression.  What do you do with such conflicting info?  Fortunately, we’d also done 24-hour urine.  Her pregnanetriol was 1.5 mg/24hrs (reference range <0.3).  This is fine for CAH kids.  Her 17-ketosteroid result was 0.9 mg/24hrs (reference range 0.1-3.0).  Well within normal.  We did not do a dose increase.  She continued to do well on the same dose.

Whether to follow 17-OHP results or androgens (androstenedione or testosterone) is a great question.  The answer for us lately has been androgens.  Following 17-OHP has consistently resulted in oversuppression for my girls.  This may be in part because they are tough sticks, and the blood draws are always a bit traumatic (thus an elevated 17-OHP).  If your daughter is upset by the blood draws, this is something to keep in mind.

You didn’t mention reference values for androstenedione and testosterone for your daughter’s age.  If her results are within or near the reference values listed on the lab reports, I would very much hesitate to do a dose increase.  I would ask the endo if you could wait and see what the next set of labs look like.  Soon your daughter will be old enough to do a 24-urine collection reliably, and you’ll be able to get a picture of what happened over the course of the day, instead of just at the moment she was being jabbed!

I’ve talked with other mothers of older children who feel as I do – that I can predict what the test results will be.  You’ll get very adept at assessing the changes you see in your daughter.  I’ve taken a much more active role in the management of my daughters’ care in the past few years.  Our endo is all for it – she knows that nobody knows our children better than we do.  We have become partners in determining the best treatment for my girls.  Your endo should be willing (and able) to explain the decision to do a dose increase despite the testosterone and androgen results.  If her androgen levels creep up the next time, you can do a dose increase then.

Good luck at your appointment.  Let us know what the endo says.  I’m always interested in another opinion.

Laura K