Sorry, my hubby needed the phone line so I had to go quickly in the last post, and didn’t answer one of the questions you asked.

When Robert had his ACTH test, he scored in the 800’s at 60 minutes.  I honestly can’t remember where he fell before the stim. was added.  But that put him in the high carrier range.  At home, mine began at 768, and went to 6,599 at 1 hour.   Part of the reason mine could be so high is the cysts on my ovaries could be producing excessive androgens (a mere possibility not a fact for sure, I’m told).

He is more symptomatic than I am.  He has  temporal balding that began in his late 20’s, has always had acne and still does, dark sallow skin but he’s half Hispanic so I don’t know if that counts, he’s 5’ 7’’ which is shorter than his brother and much shorter than his younger sister who is 5’ 9  3/4".  He does get stressed out somewhat easily, and when he gets sick, particularly upper respiratory illness lingers.  He has always had sinus problems, and rarely ever has unblocked nasal passages.  [aside... he snores like a banshee!], he also had problems with infertility (low count and low mobility both).  So naturally we assumed it was him.  In fact, when we were giving them the huge stack of family paperwork, they seemed to be more interested in testing his ACTH than mine.  They almost didn’t want to test mine.

The only thing I can remember growing up that would even be remotely symptomatic would be that I would dehydrate very easily, and had a heat stroke at band camp one year.  I also had two periods a month occasionally when I was 16, but that was quickly cured with three months of birth control pills and didn’t return until later in life.  However, I was somewhat moody and depressive as a teenager, as I listed in the last post... but then again, what teenager isn’t?  Most of my symptoms are in adulthood, and that would be the oily hair and complexion, and mild temporal balding ( only during extreme physical stress) like childbirth.  It did grow back within a few weeks.  I have never had the facial or chest hair though (thank goodness).  I do have the painful cysts as well as two periods a month that showed up around age 16 and also 28 (I’m 30 now).  Hopefully the Cortef will curtail that somewhat.  But when we first heard about CAH we originally thought it was my husband that actually had it, based on his symptoms.  Funny how life has a bit of irony isn’t it?

I had to laugh about what your husband was saying to you about being interested in genetics.  I never thought I’d be remotely interested in genetics as well!  My cousin Kim received her doctorate in Genetics at Calvin (I think she said Calvin) and I was asking her questions shortly after Savannah was born and she was flabbergasted and said "wait a minute, how do you know about all of this?"  She quit her job years ago because she had 4 kids in 5 years (a set of twins among them, and one is disabled), so most of it was foggy to her.  She did tell her sister to get tested though because she seemed symptomatic, and began pulling and dusting the old books from the shelves.  Funny what a difference being somebody’s mommy makes.

P.S. how did that conference go?

Adina