Hi Curtis,I know it is simply ages since you posted this message - however I wanted to post a reply because I think it is sad and unsatisfactory that you feel this way about your CAH management and treatment. You ARE important!!
I think everyone needs a measure of validation from their doctors when they have a chronic condition - Diabetics certainly get it in spades. They get help with this and help with that - ad infinitum!!!
So too are you correct about the care between paediatric and adult clinics which somehow switch from excellent/good to abysmal where CAH is concerned, by and large. Even adult female CAH people get it tough with Endocrinologists who so often can't get you out their door quick enough. Apart from the blood test results and BP readings, they often don't even know the right questions to ask their patients in order to elicit if they are missing stuff. I don't think these doctors realise how many people fall through the 'cracks of care' because of their lassez-faire attitude.
As a female I know for years my consultations were so perfunctory that eventually I stopped going to my visits like you, because I figured if they didn't care why should I?
I have since found an AMAZING Endocrinologist who is a real keeper and looks after my now many complex medical conditions. Keep looking and I hope you find just the right mix of an excellent and compatible endocrinologist - you deserve one. You all do!
