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Addison's Disease Message Board

Addison's Disease Board Index

Hi, my name is Kathy. I was diagnosed with Addison's in November after seeing an endo at Mt. Sinai after seeing four endocronologists in Jersey that treated me like a psych case. I've been hospitalized 15-20 times since may. Each time I went to the er after two or more days of non stop vomitting and severe stomach pains. I had my gall bladder removed, and the episodes of vomitting and severe pain persisted. I was diagnosed right before major ankle surgery, thank goodness; my endo said I had so little steroids I wouldn't have survived the flu let alone major surgery. I'm still very confused because I have symptoms and lab results that don't seem to fit into what I've learned about Addison's. I haven't menstruated in 2 years, I'm lactating (my prolactin level is normal and was told it was "impossible" to lactate if that was the case, I literally had to take out my breast and show the dr.) My thyroid antibodies are sky high, but my levels are normal. I have a pituitary adenoma but am told that is just a coincidence. My vitamin D is exceptionally low. I'm on 10mg of prednisone but I still am so incredibly tired. I saw my gp today and my resting pulse was 140. My endo dr. says the vomitting episodes are addison's crises, but the dr's in the hospital always order a gastro consult- they're convinced I have an underlying stomach issue. I chose the user name hot mess because I am constantly sweaty and extremely hot; it may sound silly but it's extremely uncomfortable. There are days I have no energy and i can't eat a thing and I feel totally hopeless. My endo dr. seems great but she scared me at my last visit. She said having one organ fail increases my chances of having my other organs fail. She mentioned the thyroid, ovaries, liver and kidney. I am looking for any info anyone is kind enough to share. Particularly I am curious if my symptoms are typical, plus what if any tips anyone can offer on how to feel better. Thank you in advance to anyone who replies:)
I too was put on prednisone when i was first diagnosed with addisons. My advice to you is first to convince your doctor to change you over to hydrocortisone (cortef). it' SO MUCH BETTER than prednisone, even though you have to take it two or three times a day.
Hi Kathy:

I agree with Reemu, Hyrdocortisone is much preferrable to Prednisone for treating Addison's. You should probably also be on Fludrocortisone. However, I think you're right, and what's going on with you is much more than Addison's. Your symptoms do sound like endocrine issues to me, too, and it sounds like your hormones are all out of wack, hence the lactating, hair growth, etc.

Glad you're familiar with Mayo. It would be a long trip for you, but you need some answers. I am glad to hear you don't have the added burden of nursing a baby while all this is going on. Good luck, and let us know how you do!

Your symptoms sound very similar to mine. I was diagnosed about 12 years ago. I am currently taking 20mg of Prednisone and .2mg of Floudrocortisone a day. when I start getting sick I up my dose to 30 or 40 for three days then wean myself back down every three days until I reach my normal dosage. I also am constantly tired no energy, sometimes no appetite. Although I have not been diagnosed with diabetes, I was told to monitor my blood sugars because they tend to either go high or low. There are days when I feel great and days I feel absolutley horrible. My GP has been a god send. He was the one that found it after many trips to the ER and almost passing out on the highway while driving. I did see endocrinologist and I have not found one I truly like. They treat you as if you don't know what your talking about. Who else would know your body better than you? Even after being on the steroids for many years, I still have elevated Sed rates, white cell counts (which can be caused by the steroids) and who knows what else. I haven't had a period in 5 years, I get extremely warm and sweaty and it can happen various times of the day and many times through out the day. I try to avoid anyone who is sick because when I get sick it takes me forever to get over it. Thank god I have only had an Addisonion Crises twice. And I hope to never have another one. If you go in for surgery, please, please please make sure they give you a stresser dose of steroids prior to surgery. This is extremly important. If you have any questions, please feel free to contact me.

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