Hi Smiley!

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I wasn’t diagnosed until I was an adult, in spite of obvious symptoms throughout my childhood.  They didn’t know much about CAH then, though.

My first doctor didn’t know what to do, so she sent me to a specialist.  At that time, I didn’t need anything more than birth control pills to regulate my periods and spironolactone to help control my hairiness.  The combination left me feeling 100% better though!  My heart rate slowed, my appetite diminished to normal, my insomnia went away, and I stopped having hot flashes all the time (mind you, I was 22 when I was diagnosed -- not menopausal).  My periods went back to normal, the hair growth slowed, and I just felt better.

Last year my symptoms got much worse and my DHEAS level was about 10x higher than it was the year before.  My new doctor put me on a very low dose of dexamethasone (a steroid).  I was very skeptical.  After three months on dex they repeated my bloodwork, and it came back NORMAL for the first time ever.  I haven’t lost weight, but I dropped two sizes; the fur I’d grown all over my belly has pretty much fallen out, the hot flashes are better again, my heart rate is slower, and again, I just feel a lot better. 

The specialist my first doctor sent me to was an endocrinologist specializing in women.  The doctor I have now is a OB/GYN, but the first non-specialist I’ve had that is more eductated in CAH than I am.  May non-classical (or late onset) CAH patients are on steroids, and many aren’t.  Some have a lot of side effects, some don’t.  My CAH had only last year progressed to the point where I really needed the steroids.  Just make sure the doctor you’re seeing is well-educated, particularly since most endocrinology studies are on men except in the field of fertility.