Hi Elaine,

You were sorta close about my age! I’m 36 but people think that I’m 26 or at the most 28 :) and I actually feel like I’m 26 too.

I hear ya about the over supression part becasue at one time they had me up to 20mgs of pred a day for awhile scary and it didn’t achieve the effect thet were after but did give me more pronouced cushingnoid like symtoms due to our friends ..the cortisone drugs but we would be worse off without them :P

 I always took like 5mg of pred - I never was that fat unless in was winter and I was at the height for my bio-family and went in to puberty at 12. I had enough paws measuring me and touching me all so very interested in my puberty but to only instill anxiety that funnels of Becks beer couldn’t take away. It took me until my late 20’s until I stopped flinching when people would put out a hand to touch me and being touched depending on the person is still physically painful.  They worked up to the 20mg pred for awhile because they were trying to counter act either what the CAH was doing by way of effects while in puberty or they were just throwing more pred at what my actual puberty was supposed to be and they didn’t help......she has hair gasp! lets throw more pred at her and I swear the hair just grew more but it did stop on it’s own after i reduced the pred myself  when I left that state : )  

I  was the one that told the new Endo that yep errrr  .......10mgs that is what I take and the blood test came back super ummmm should of told her that it was 7.5mgs of pred because she fussed when I wanted to go lower. So I  went to another one and ripped and roared until he stated ok 7.5 it is and the blood work and was super. I like Endos but again I’m not a lab number : 0 I am particularly quite found of the endo that I have had for the last three years and he is brilliant but even he doesn’t know everything plus he is pleasant to look at and if one has to have chronic medical conditions? it is an added bonus if the one that you trust with your health looks good also but by far the best looking one yet is this gastro doc.

So...all I was asking for was to swap a 5MG hydro dose out here and there with a 5 or 10mg of pred whenever I felt the need for it and I experimented with a friends pred that she didn’t need. I figured that back in the day THEY & the surgeon thought it was in my best interested to slice and dice my genitals to fit their specifications. They had me taking 20mgs of pred with the side effects that go along with that. They had me service students and they learned about CAH ...took away my dignity and violated my bounderies in the process but they really meant well .

So... me the person with the condition should be able to ( just this once see ) if taking pred here and there might help me and it did. I don’t shuffle in the morning like I was doing for awhile trying to walk, I have my appetite back, I’ve lost a little weight, I exercise, I wake up without an alarm clock and I’m pretty much mellow/happy/rested  for the most part like a cat and never ever a dog  instead of being cranky and tired.

I thought the endo would be happy but the reality is that what I’m doing can’t be charted even though I feel great. I do understand the nature of the speciality and unfortunately it is about their baselines and numbers and not how the patient feels. We think the surgery stuff is a controversy  hehehehe when to treat thyroid conditions is a trip also- you will get the synthroid when they are ready and if you want to try another type of medication and keep the same endo? it isn’t going to happen. 

I’ve met my quota for writing before the other ones start calling me names or going you’re sarcastic or you need a theraphy.....yeah I went to a therapist and she thought CAH had someone to do with transexual because people that transed came to her school and talked about CAH among other conditions. The other therapists all thought I was Ok but thought I had "alot of medical #### to deal with" as you do also from reading your all your posts. Thanks Elaine for writing and being out there. It is amazing how far the medical knowledge has come with our condition.....sweet indeed : )