Congenital Adrenal Hyperplasia

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To anyone able to help with lab results!
May. 23rd, 2008   3:36pm

Could you kindly offer some clarification on some ACTH stim results for me?  I believe I have a form of LOCAH.  My stim results did not indicate 21hydroxylase deficiency or 3 beta.  However, my stimulated deoxycortisol levels were not normal. 

At baseline:  20 ng/dl (normal)

30 minute draw:  153 ng/dl  (marked high)

1 hour draw: 186 ng/dl  (marked high)

Normal range according to the lab are < or =51 ng/dl

My doctor called the other day and said everything was "normal".  These don't look normal to me.  I tried calling her office and of course, they will not be in until tuesday:(

 According to all the articles I have found,  a diagnosis for 11 deoxycortisol deficiency is made with levels 3 times the upper limit of nomal.  Mine clearly are.  Is   I am so frustrated!  It has been over a year of trying to get answers and 8 different doctors!  I pray that it was just an oversight and she did not see the results for 11 deoxycortisol:)  I really like her and would like to not have to search for yet another doctor who knows something about LOCAH and will treat me.

anonymous
anonymous




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