I was diagnosed at the age of 38 years with osteoporosis.  I have never broken a bone in my life, have never had an eating disorder and do not smoke. The only reason I requested a bone density scan was so that I could compare my 'normal bones' to those of my son, who has CAH.  It was quite a shock to discover that my bones were far from normal!  I was referred to an endocrinologist who did a full hormonal screen, which showed completely normal levels of calcium, thyroid and oestrogen (the latter showing that I am far from menopausal).  I also had a synacthen test, which showed a 'normal' level of 17OHP for a carrier (I had not realised before this that carriers have higher levels than non-carriers). The only unusual result was my high urinary sodium excretion, which could be a cause as salt leeches the body of calcium.

My consultant did say that he wonders whether there could be a connection between the carrier status of CAH and osteoporosis but as far as he was aware, this has never been looked into.  Bone density is not usually looked at in women before the menopause and I only found out my condition by chance, which is good as I am now on medication to improve my bones and prevent them getting worse.  I would just be interested to hear whether any other carriers of CAH have had the same diagnosis but doubt that many have had the bone density scan.  I certainly do not look like a candidate for osteoporosis and lead an active and normal life.  I read with interest that in the US they are discovering that osteoporosis is a real possibility for patients with CAH but are carriers also at risk?   Perhaps they too should all be offered a scan as the earlier the diagnosis the sooner you can start improving the condition.