- CASE FILE
I have been living with an unknown autoimmune syndrome for most of my life that my oldest daughter is starting to show signs of too.
ABOUT THIS CASE FILE
I have been living with an unknown autoimmune syndrome for most of my life that causes fatigue, episodes of vertigo, joint and muscle pain and the random growth of tumors (generally benign, but often painful) all over my body. I had the right side of my thyroid removed in 2000 due to the suspicion of papillary carcinoma (pathology inconclusive) and the left lobe of my thyroid was removed in 2004 after finding hurthle cells during an aspiration (also inconclusive results from pathology after removal). I had genetic testing done around 2005 in an effort to find out what was causing all of these issues at the recommendation of my maternal/fetal medicine doctor requested it due to myself and my children having some traits that made her think it was a potentially fatal endocrine syndrome (I can’t remember the name of it, but it wasn’t, thank goodness)! The traits she noticed were: thyroid masses, thyroid cancer, inflammation of lymph nodes, smaller than normal head circumference without cognitive impairment, lumps on the lower, inner jawline and blood disorders (I have Factor V Leiden).It has been rough dealing with all of these issues and trying to make sense of why feel the way I do, especially to doctors and other people, but the hardest part of it all is that my oldest daughter (19) is starting to have the same problems with her thyroid and random tumor growth. Please help us find out what this is so my daughter doesn’t have to go through this.