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denadet (@denadet)

Multiple autoimmune diseases

Autoimmune Diseases | Last Active: May 19, 2020 | Replies (33)

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@mrsjaneorr

Upon my first diagnosis, Sjogren's, I was advised that having just one auto immune disease is rare and to expect them to find more. Yes, they did. Primary Biliary Cholangitis, Hashimotos, Gastroparesis, Ulcerative Colitis, peripheral neuropathy GERD, arthritis. My eyes are too dry and I can rarely drive, lost my teeth to dry mouth. I can't touch anything frozen with bare skin, I have to wear three pair of socks. Constantly exhausted. As long as I am rambling, here is the short story: I had a primary that knew I had issues and he nearly killed me. My TSH was at 78, I was in diapers (I am 56), daily nose bleeds, high blood pressure patch and 26 pills a day!!! I went to him for a year with diarrhea and nausea. He just kept telling me to take Pepto. Luckily I had PBC and I was able to talk to another doctor (pcp wouldn't refer me out, thought he was "all knowing"). The GI found the ulcerative colitis and the gastroparesis….these were stopping the absorption of my thyroid meds. The last time I saw him was a year ago, he'd pulled out his RX pad again. I stood up and said, "no thanks, I need a new doctor" and I walked away.
Found a new primary (who told me about the TSH at 78). He took the blood pressure patch off (I have always had low bp) and told me I would get better.
I looked at what I was taking, 4 of the prescriptions I was taking was for anxiety and depression. I was misdiagnosed with anxiety/panic attacks that were, in fact, gastroparesis so I weaned myself off of those meds. I was also on Gabapentin for Fibromyalgia, I quit those, too.
Now I take my Urso, levothyroxine and an antacid. About once a year I get a round of Prednisone.
I lost 50 pounds in 3 months! I KNEW I wasn't eating enough to support weighing 180!!! I am only 5 feet tall!!
I have had people say to me that the doctors know what's best for me. I will NEVER put full trust in anyone regarding my health ever again. If I don't look out for me then no one will.
Hang in there and learn all you can so you can make decisions or at least ask questions so you understand.

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Replies to "Upon my first diagnosis, Sjogren's, I was advised that having just one auto immune disease is..."

Hello @mrsjaneorr, welcome to Mayo Clinic Connect and thank you for sharing your experience and why it's so important to be your own advocate for your health. It means a lot coming from a person sharing their own personal experience and how being a strong advocate for their health has helped them. Great advice!