Hi All
I am a 52 y.o. female (12/7/1954) and am still arguing with the endos abt this problem. The endos think they have this worked out but I don't believe them. I was taking dex only .125mcg. I have argued for years that dex has too many side-effects, finally I found an endo who agreed. It is no longer used in the UK for this reason.
I now take 20mg hydrocortisone tabs, fludrocortisone 100mcg, both daily and have an injection for emergencies. Usually if hospitalized, which is rare, Emergency ppl don't know what to do. If dehydrated try Gatorade or a sports drink, look for the highest sodium content. Recently dehydrated and given Stemetil (for nausea) too. I carry my own medical notes as Medic Alert is not used if you are conscious and it can be too difficult to explain when in crisis. I would also suggest you add calcium in high doses to your diet.
Pls be careful of electrolyte (sodium, potassium) imbalances, depression, inner trembling, vision and dizziness, problems which may pass unnoticed. I have only found out recently that inner trembling is something to be aware of. I was misdiagnozed for menopuase (started at age 44). If unsure about anything, ask for a 2nd opinion. I had to step out of the circle of thinking of the endos I was seeing before someone agreed with me. New endo said I was right, meds wrong, testing wrong etc.
I see a psychiatrist each fortnight and that is worthwhile, in fact I think it is essential for females. Little attention is paid to the psychological impact of CAH and you also have another dr for another opinion. I have had problems with suppressed anger. You also have to educate your GPs as all I've met have never heard of CAH.
This is the first time I've posted on this subject. Most ppl seem to enquire abt their kids. I just thought I would post so you would not have to undergo nor misunderstand possibilities/side effects which may occur. My father was a GP and told me nothing. I am married and we do not have children, although tried IVF for many years. Repromed were interested in v high progesterone levels and considered RU486. I said No as 20 years ago as this drug was too controversial.
