Today was better, but then I took it really easy. I relaxed, managed to pick up the house and I *did* breathe. But still, up and down, up and down. While I'm still adjusting to the medication am I supposed to be resting or trying to live a normal life?
As for tests: I've had AM cortisol, ACTH serum (not stimulation), electrolytes and CBC. That's about it. The final diagnosis was made by my symptoms and response to steroids. I've got the elevated K, the decreased sodium, the pigment marks around my eyes, lips, groin, armpits and waist. I've had hyperkalemic paralysis multiple times and persistant low blood pressure. After my son was born I had every symptom of an Addisonian crisis. It took me a year to recover. I've been so weak the I was wheelchair-bound. My gyno says the Addison's explains my persistant lactation, but I haven't figure out *that* connection as of yet. I had a mysterious year of no menstral cycle followed by 5 years of long, irregular cycles. Muscle spasms, tachycardia, palpitations, you name it.
And it all went away with a steroid shot. Heck, I even lost 13 pounds after the shot. Turns out that what we always thought was water retention was massive inflamation that would never go down.
The doc tells me that he'll be able to tell me if it's primary or secondary with the AM cortisol and the AM ACTH draw. I don't buy it.
I have to stay up until about 2AM with my son every night so that's why I'm on the weird schedule. I don't wake up until around 10. (plus or minus an hour) So my 10AM is a "normal" person's 7AM and my 2AM is a normal person's 11PM. So, if I take my second dose at 3, it's like taking it at noon.
I'm upset about the prednisone. I've never done well on it when I've tried it over the years for different things. It's like I trade a half a dozen problems for a half a dozen new ones. The Kenelog and hydrocortisone feel perfect to me with no obvious side effects. I'm frustrated with my dr for blowing me off and giving me prednisone even when I told him it made me feel like crap and requested hydrocortisone. *He* was listening to an endo consult that is soon to be my new dr. I'm shopping for other options.
I can't thank you all enough for helping with my confusion and frustration. I do need to do more homework. (and I've done a lot!)