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Yes it is me from the UK. As you know my son (SWCAH) uses the pump to deliver hydro slowly and continuously which follows the circadian rhythm perfectly and has been on this now for 4 years (this week). When he initially started on it, he was on a high dose of hydro and over the years he has had the dose lowered, as we have found he needs less hydro to keep his 17 OHP perfect and where we want them.
When the dose was higher, (he gets 100% absorption and we know exactly what amount of cortisol he is getting) he initially got enough mineralcorticoid from the hydrocortisone, so he stopped taking fludro and his renin stayed stable. However now his dose has been lowered he needs some fludro again. His doctor wanted to make sure he would be OK without it, hence all the extensive regular testing! What amazes me is that he feels no different in himself with or without the fludro, he feels great, so hence my interest. Tests did show that his b/p had started to drop when standing and obviously his renin was high etc, and as he has started surfing, yes madness in this cold climate, he is more than happy to take it.
Your hydro dose is high for LOCAH but you obviously need it and it is unusual to start fludro at your age but it is really good to hear that you are doing so well and it is an inspiration to others and important others know these things can happen.
The genetic testing would have been interesting, only in case as I said you have some unusual markers.... it seems that some salt losers amazingly are only diagnosed later in life, or can give up their tablets - I cannot even pretend to understand all that!!
