Addison's Disease Support Group

Jeep,
Glad your appointment went well. I hope they get you all sorted out. WOuldn't that be a hoot! Nice to hear some good news.

Vanyel

Jeep,
That's great!! I thought abt your appt when I realized the date. I'm glad you made out so well.

I wish I'd had a Dr like that 20 yrs ago. :) might have had a life, at least an enjoyable one. I wish I could go that route, but the insurance would probably be a problem.

I hadn't been on. Was feeling pretty bad all of a sudden and didn't know why. Now have a bladder infection. Fever, crappy! Felt pretty good for a couple days. Had decreased the hydrocort. to the 30/20 for 2 wks. Gotta get down to the 20/10 and stay on that before my Hershey appt. Hmmmm, never thought, wonder if it should be increased with this fever? Oh well. Gotta run to the pharmacy before they close at 5. Not open up here on weekends.

What all did the Dr do, or tell you?? I'm curious.

But also haven't been getting the Daily Updates??? I don't know if it's my mail. No idea.

Hi Van! HI Maggie! I too am glad to finally have some good news about my care to post on here!
Maggie, you asked what all the dr told me and did..it was a lot for such a "quick" visit!
she DID tell me about "Sick day Rules" which I never knew about where if you have an infection ( like you do Maggie) you need to increase your steroids by a certain amount for 3 days! An infection like UTI, Bladder , bronchitis and if you run a fever of 101! This was good to know and maybe YOU need to know this so ask your doctor!
she agreed I am on too high of a dose and that the dangers of that are Cushioningoid Syndrome and Osteoporosis. So she said the normal maintenance dose is much lower ( I think even lower than the 10/10 I was on) BUT that is a personal dec between the dr and the patient so am NOT giving advice here on that at all!
She is testing me for Celiac Disease. she thinks the abdominal symptoms and wt loss may be that. I hope not as everything that you can not eat is what I DO EAT! UGH!
She ran a bunch of labs for so many things i really don;t even know! Different anti-bodies and thyroid tests and ACTH which she asked me if I have salt cravings which I do, but have had that for many years, and she said i shouldn;t have those cravings so it may be an ACTH or Aldesterone issue I think? Or it could be hormonal.
she gave me an rx for the injectible steroid but the phcy called to say they don;t make that anymore. I would have to get it compounded and my ins won't pay so I called her office and am hoping there is a different kind that she can prescribe.

She also thinks I should see a rheumatologist to re-evaluate the fibromyalgia as she thinks it may not be that but some other disease that should be treated differently.

so, I am to call her Monday or tuesday to see how i am tolerating the reduction in steroids. I am only going down 2.5mg at a time but I think she wants me to lower it every 4-5 days.

She was just very helpful and very thorough and well, it was just a great experience! FINALLY!
Oh this was interesting: she checked my reflexes on my kness and my rt leg did something that made her comment. It kicked out ok but the return was odd she said and that is indicative of a thyroid issue! Huh never knew that! My left leg did not seem to respond much at all and that is the leg I have the bad weakness in and of course forgot to ask her about that! So will ask on Monday.

Ok am beat ( got up at 3 Am yet again today..3-4Am seems to be my new wake up time!)so am off to bed!
Will write messages soon!

Hey Jeep I so agree with you I went to my local dr's around where i live and then i gave up and went to University of Cinci. and i say to my self every day why did i not do that 6 years ago!!!! when all my problems started !!! So Yes i agree Jeep !!! :)