Congenital Adrenal Hyperplasia

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re: high cortisol in non-CAH daughter
Mar. 28th, 2007   11:46am
I'm struggling with this myself, if you've been reading this board then you've already read about this. In my daughter's case, I believe her high cortisol reading was the result of being taken off prednisone for 1 day prior to the test. She has chronic hives and so being taken off the pred made them worse (a rebound effect) and that stress caused her cortisol to rise. Of course, that's my theory. Can't wait to hear what the endo says--she had a repeat test done this week.

One thing I've learned is that 1 cortisol test doesn't tell you very much, except that your body is capable of producing cortisol at that level. If the readings are high, then it tells you that you don't have adrenal insufficiency, when your body is not ABLE to produce enough cortisol. Cortisol levels not only vary through out the day, they are pulsatile, meaning released in pulses, not in a steady flow. To get a more accurate reading, they should take 3 levels in 15 minutes or so and average them. I've not seen anyone do this, but if you read research papers involving ACTH stim testing, that is how they usually do it.

So you should really do a repeat test to see if the level is high again, and then think about stresses that might cause it to go high. Maybe the insulin resistance or PCO is causing some stress? I really don't know, but it's something to consider. Is there any reason to suspect Cushings? Why was she getting her cortisol level checked in the first place?

As far as LOCAH, unless her 17ohp levels have risen, it seems unlikely. Maybe worth checking again with a repeat cortisol level. This does bring up an interesting question. As I recall, your son's stim test results were pretty high for a carrier. Could there be another mutation that they missed that your daughter has? Maybe she is a symptomatic carrier and he actually has LOCAH. Did you and their father also get genetic testing?

Kat




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