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Addison's Disease Message Board

Addison's Disease Board Index

Thank you so much for replying- this is my first time posting on anything- I was convinced no one would respond, and I really feel like I need all the info I can get from real people who have gone through it. I just want to clarify, I'm not nursing a baby, I have no idea why I'm lactating and neither do my dr.'s. Thank you for suggesting the Mayo Clinic, I don't know why I hadn't thought of that; my sister went there years ago when she had a chronic illness that no one could diagnose here. I really want answers to the symptoms that the Addison's does not explain. For instance, after my ankle surgery in November I spent four days on the heart ward with supra ventricular tacchychardia, which my endo dr said is unrelated to the Addison's; I saw a cardiologist and he was "intrigued" but had no answers. That, the lactating, the high thyroid antibodies, the swollen ankles, the weight loss, always feeling like its 110 degrees but my body temp is 96, the pituitary tumor, the super high pulse rate, the markers for a rare tumor (pheochromocytoma), the hand tremors, I feel like it all has to mean something. Also I have fine blond hair growing all over my face! They all seem to be endocrine related symptoms. The endo dr. I'm seeing now (she's the one who diagnosed the Addison's, everyone else literally blew me off) is at Mt. Sinai in New York and runs a research lab. She's taking me very seriously but I don't feel like she's investigating these other symptoms. I will look into the Mayo clinic. I'm not able to work right now, so if my insurance pays for it I'll be there! Thank you again for your kindness, and the suggestion, I will definitely look into it as soon as possible:)
I was diagnosed 10 years ago with Primary Addison's. I do not have any pituitary involvement. I had a hard time keeping my weight up at first. Now I am just the opposite. I have gained so much weight and I think it is from the steroids. I have hand tremors as well. I also get extremely warm and if I sit for too long, my ankles will swell as well. I have a fast heart rate. Just recently I started having problems of passing out. Now my doc thinks my heart muscle is weak due to the Addison's and being on the steroids for so long. I just wanted to let you know that most docs don't really understand the disease and because it is so rare, they really don't think to look for it. Like I said it took my doc many years to find out what I had and in the mean time, I felt like I was a hypocondriac(sp?).

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