Carol, I was on .625 for a year, then last summer went down to .5 (that took about 2 weeks of being very tired), then about 3 weeks ago my endo recommended going to .375.  I lost 10 pounds going from .625 to .5 and now at .375 I'm finding I'm feeling anorexic - and very tired when I get up in the morning and wiped out by afternoon and sleepy. I have lost another 2 or 3 pounds in the last 3 weeks. The last 3 days I have taken .425 just because it scares me when I start to feel like I was (really wiped out and not clear thinking - precursers for me to crisis) and I feel much better. My face and stomach are WAY thinner than they were - I can see my ribs too - Ihave to be careful though that I'm on enough steroids. I think I'll stay with .425. Don't think .375 was enough for me. I have tried taking Dex in the morning - for about 2 months - it made me feel foggy headed. I don't have problems sleeping unless I get up to go to the bathroom and start thinking about stuff to do for my classroom - then I can't go back to sleep because I think I'll forget what I was thinking about. I put a paper and pencil next to the bed to write things down and that helps me get back to sleep.

I don't know if you've read my posts during the last year about my brother and his similar problems to mine. He has been to two endos and both refuse to give him an ACTH test or test his DHEA and 17OHP. He's had chronic headaches and anxiety - he's 40  and missed tons of work - luckily he's at Boeing and has lots of sick leave. Anyway - I talked to a guy in Canada with LOCAH that has similar symptoms to my brother. He and I did a conference call with my brother about 2 weeks ago and we both decided that I would give my brother one weeks worth of .5 Dex pills and if it helps his headaches we would take the findings to yet another endo (my brother and I live 3 hours apart). Anyway - I mailed the Dex to him and he got them today. I can hardly wait to see if they help him (lord knows they won't hurt him) The poor guy has been in misery for several years now and on every type of pain pill known to humans for his headaches and nothing works - if it's his cortisol (which has come out low during testing) we'll know why the other things he has tried didn't work (beta blockers, anti seizure medication, Imitrex, etc etc etc) I'm not one to share medications - in fact I'm against it - but Jeez - anything that will help to get him diagnosed with CAH. The endos that he saw  - when he mentioned that his sister has CAH - said "Well, extra testosterone isn't a problem in men" I could SCREAM! Sorry for the rant - if any of you out there believe in the power of prayer - please pray for my brother Tom. Thanks

 

Susan A..