Autoimmune Diseases and What We Aren't Told
Last updated: April 2023
Hello all, I am in Australia and until 2019 lived a healthy and active life.
Searching for answers
I have had an underactive thyroid for years (15) or more but have never been told it was Autoimmune related, I then developed an intolerance to gluten (Coeliac disease) again not knowing it was Autoimmune related.
Move forward to April 2019 and I go to the Doctor thinking my thyroid was underactive again to be told "nope," off to see Gastroenterology as my liver levels were high, what did that mean?
Seeking a second opinion
I was diagnosed with Primary Bilinary Cholangitis. Never heard of it, what does it do? Got no answers from the specialist but was put on medication and was asked to come back and see them in a month. I asked for a new specialist as the answers I got from this one did not sit well with me and I did some research and the disease was horrific to me. Moving on from this, my new specialist is fantastic and I am being well looked after.
"We think you have lupus"
In 2022 I went back to Doctor thinking again of thyroid or liver issues, but "NO, we think you have Lupus"; November 2022 I went to a Rheumatologist and was put on Plaquenil for Lupus, and here we are today with 4 Autoimmune diseases and absolute hate for my body and system as I try to process and function. I am mentally, emotionally, and physically exhausted most days and I am trying to work full time and renovate a house and pretend that life is great, and I am happy. I am not, and it is bloody hard.
Which resource do you think is most urgently needed in the lupus community?
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