MICHELLE R -  I have tried to minimise my dose enough to keep my levels sane but to also maximise my well-being. However, I’m not altogether sure that I have succeeded too well. One major problem is that even if I have levels done every six months (as an adult), I basically have to stay on a lowered or raised dose for six months until the next lot of testing to evaluate the success of that dose - hormonally. Although, I do know that I bombed  three weeks ago on a lower dose as I got the shakes, acne and a terrible cough which wouldn’t clear up. I asked my GP to do a 17-OHP and it was quite raised. So I had to go into ’rescue mission’ to bring down my levels and once the cough went I knew I was back on track.

ANGELA - I am thinking of discussing with my endo the virtues/benefits of trying another medication. I also take Losec for stomach problems. In fact I had my second gastroscopy only this week for worsening symptoms. ALSO I think you are way too young to be having stiffness in your joints. I’m beginning to wonder whether some of the really bad sore/stiff joints muscles I’ve had these last six months have been because of too low a dose.

ANNE-MARIE - I’m due to have a bone density scan done in the next couple of months.

WOLVERINE - You’re quite right about improvements in treatment and management taking decades to achieve - tough luck for us tho’! (I guess we’re at least alive and didn’t need to transgender). Regarding lack of energy - my Endo’s x 3, (childhood & two adult endo’s), over the years have just written in their notes, "lack of energy", "fatigue" or "constant tiredness" but never seem to offer a constructive explanation. To me it’s useless in the notes without some practical help!!! Sounds like a couple of you young ones have bursitis (?coincidence). My doctor thinks I may have a hip bursitis also. You suggest that you’re coping better on the Hydrocortisone than the Pred. How has it helped if you don’t mind me asking?

???? - Yes, I do think that the sheer length of time one takes these meds must have an effect. Added to that a cortisol/synthetic replacement dose such as we take cannot duplicate the exact pulses and rhythms of endogenous cortisol that happens throughout each day. Multiply that by many years and I believe our bodies live under quite a lot of stress. I don’t think the effects necessarily manifest until perhaps the fourth or fifth decade of life.

Thanks all, for your positive attitudes and responses. Maybe I’m a bit depressed at the moment - where life does tend to lose some of its colour and that mixed with constant discomfort and too low a steroid dose, doesn’t help. I need perhaps to make some changes and follow-up on the counselling that I’ve NEVER been previously offered and work through some of the psychological aspects/frustrations of having CAH - better late than never, I guess!