Hi ckl,

I am sorry for keeping you hanging. I did see your earlier post, but wanted to check a few things first before I responded. I hate to say things without being at least reasonably sure of what I’m saying. A couple of things:

The revised labs that you posted indicate this:

1. Low DHEA (even though you have posted that it was normal. Again, are you certain of the units which you noted...i.e. "micrograms/deciliter"? The number makes more sense as "normal" if the units used were "nanograms/deciliter", which is a bit more common when measuring DHEA.)
2. High cortisol
3. High ACTH
4. High 17-Ohp

First, assuming that all the numbers and units are correct, as stated, I agree that there are several inconsistencies here. In someone with CAH, one would expect HIGH DHEA, and LOW cortisol.......not the opposite.

At the same time, (in my opinion) the DHEA and cortisol numbers are secondary to the ACTH and 17-OHP numbers, when making a diagnosis. I think it would be very difficult for a doctor NOT to suspect CAH when confronted with such high ACTH and 17-ohp numbers. I don’t believe there are many other reasons, or many other medical conditions, besides CAH, that would cause a child to present with such high numbers.

But, remind me again (I’m sure you’ve mentioned it before...I’m sorry but I don’t remember): What caused your son to have his blood drawn and be diagnosed with CAH, in the first place? Was he diagnosed through a newborn screening program? Did he suffer from an adrenal crisis in the first weeks of life? Were other tests also run at the time, such as electrolytes?

I know how much easier it would be if all lab tests, and all lab values, made perfect sense and came out the way we expect them to. But sometimes they don’t, causing us to doubt the accuracy of what we’ve been told....I am the same way as you, the slightest inconsistency used to throw me into a complete tailspin. With time, I’ve (hopefully) been able to figure out a bit better what is really important, and what to let go. Easier said than done, I know.

Anyway....I really can’t give you a definitive reason why your son’s cortisol levels was high, when they drew it at birth. Perhaps, it is because he does have SOME adrenal function, i.e. 1 or 2%. Perhaps they drew his blood at a moment when he was extremely stressed, causing an abnormally high cortisol reading at that particular moment in time....I really don’t know. I do know that cortisol levels can be highly variable. In and of themselves, I don’t think the levels are not enough to make or rule out a diagnosis.

There is no reason for you not to ask these questions of your son’s doctor, though. Even if the diagnosis doesn’t change and the end result is the same, I think your questions are valid questions, and deserve a thoughtful response. From your previous posts, I’ve always thought your doctor sounded like a good doctor, and I would also be interested in hearing what she says.

Best,
Carol