I am a 45 year old mother of 3 with Late onset CAH.  I was diagnosed at age 32 but had concieved (miraculously) 2 children by that time.  I chose not to treat my LOCAH and went on to have one more child(10 years apart but with no medical intervention). Also, of interest is the fact that after a lifetime of 2-3 periods a year, a tubal ligation after my last child 9 years ago has left me with regular monthly periods.  The docs are stumped. One and a half years ago I had a severe change in my health.  Previously I was healthy, athletic, normal weight with no major complaints.  I did feel my energy was substandard but worked through it.  The change brought me to my knees.  I was exhausted, horrible headaches, weak, shaky especially in my legs, had a feeling like I had no balance.  These symptoms persisted in earnest for 6 months.  Then I started to see some improvement but it was a see saw.  Get better, slide back.  Eventually I was put on hydrocortisone even though all the Doctors felt my symptoms were not necessarily caused by my CAH.

I started on 20mg HC, 10mg AM, 5mg noon, 5mg dinner.  I am now down to 15mg but the schedule is 10mg at bedtime and 5mg AM.  I guess I feel better most of the time.  I do see a definite deterioration before my period.  However, my skin has erupted since starting the meds.  Previously, my skin was under control.  I have also gained 8-10 pounds in 5 months.  Reducing the dose has not helped.

My question is if fertility is no longer an issue, why treat locah?  Testosterone is beneficial in preventing osteoporosis so why suppress it at this stage.  I thought I was getting HC for the cortisol that I appeared to have a deficiency of.  But the doctors seem more set on controlling hormones.  Which brings me to my final question and thought.  I am sure I am perimenopausal.  My hormones are all changing.  Maybe it is more important to address the perimenopausal hormone changes than suppressing the androgens caused by LOCAH. 

I appreciated any thoughts or experience on this subject.  I am really considering weaning myself off the HC and see how I do.  But I am trying to gather as much info as possible before I do that.

Thanks Denise