Hi Anonymous,Elevated 11-deoxycortisol (also known as "Compound S") is something you see with CAH caused by 11-hydroxylase deficiency. With that said, I have to say I do not have a good feel for what a normal or abnormal lab number is for 11-deoxycortisol. At the same time, if your stimulated number (186 ng/dl) is 10x your baseline number (20 ng/dl), perhaps you have good reason to believe something is "off" and you may have a mild, or "late onset" form of 11-hydroxylase deficiency CAH.
Do you have any other symptoms? With 11-OH deficiency, androgens are also elevated. So, you can see many of the same virilization issues as with 21-OH deficiency. Unlike 21-OH deficiency, however, 11-OH deficiency is often associated with high blood pressure. Do you have problems with hypertension? If the answers to the above are "yes", then--coupled with your lab results--it may be reasonable to suspect a form of CAH.
Obviously, you are an adult, at this time. I assume you are seeing an adult endo? Unfortunately, adult endos don't really seem to know much about CAH. It's not that they are poor doctors, but since CAH is usually diagnosed in childhood, adult endos just dont' seem to have the experience. I would suggest the following (which might seem sort of strange): Perhaps you should consult with a good pediatric endo. They generally seem to know more about diagnosing CAH via lab test results. I think more pediatric endos are extending their practices to include adult CAH patients (my son's own endo, included)simply because they realize that there is a gap in the care available for adults. I don't know what area you live in, but I might ask CARES for a referral to a good pediatric endo in your area.
Hope this helps. Best,
Carol
