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Addison's Disease Message Board

Addison's Disease Board Index

Hi there- this posting is long overdue as I'm having a VERY difficult time managing my meds, moreover, my life. I was diagnosed w/ Addison's 3 years ago, and probably lived w/ extreme adrenal insuff. for a few years before that. I'm new to this forum and am hoping that someone out there might have some suggestions for how to get through the night without waking up in sort of adrenal crisis mode (EVERY night). I wake up every night/very early a.m and feel horrible; extreme nausea, lightheaded, fast heartbeat, and in need of cortisone, salt & food. It's making me extremely depressed because then when I do need to wake up, I am soooo wiped out. It is a battle to get to work by noon & I often am dragging myself through the day. I am 38, 5'4 and only weigh 96 lbs. This is another battle - if anyone has any ideas how to put on weight....I'd love to hear. I am very hypoglycemic and so need to eat every few hours, so my low weight certainly is NOT from lack of calories.
Currently I'm taking 25 mg of hydrocortisone divided into 3 dosed throughout the day, and then I take 1.5-2mg prednisone (equivalent to 6mg hydrocortisone) around 9p.m.... this usually carries me through until about 5a.m. I don't fall asleep until around 11:30 so getting up at 5 is not enough sleep for me, nonetheless, I wake up and have to deal w/ feeling totally screwed up... then I go back to sleep. Anyway, I don't want to babble too much, but if anyone has any ideas, suggestions, similar frustrations, etc. PLEASE drop a line.... whatever I am doing clearly is not working. Does anyone take time-released hydrocortisone or prednisone? This seems like it might be the answer. FYI - my last cortisol test showed cortisol less than 1. Obviously I'm pretty fragile.... sometimes it seems so unreal.

Thanks in advance for any advice.....
Hi there. I'm sorry you're feeling so poorly. I was diagnosed with Addison's a year ago, and I am also trying to get my meds balanced. I do think I'm fairing a bit better, though. My experience has always been that if I took my hydrocortisone too late, that's what kept me awake. I also need Fludrocortisone to keep me feeling well. As a matter of fact, I've found that the dosage I seem to need is nothing like the textbook protocol: Upon rising, I take .88 Synthroid (I'm hypothyroid, too), .1 mg Fludorcortisone, and 10 mg Hydrocortisone. THAT'S IT. That gets me through the day, and I've begun sleeping through the night, which I haven't done in years. Now everybody's different, and I'm not telling you to try what I'm doing, but I think you should listen to your body, which is clearly telling you that what you are doing is NOT working! I very much question why you are taking both Prednisone and Hydrocortisone, too. Seems like overkill. And it seems like you should be on Fludrocortisone, as well. Perhaps you need a second opinion? I hope you find the answers you're looking for. Take care.

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