In July 2013, I was at my business boiling out our fryer with chemicals. At the same time, we had resurfacers here using chemicals on the bowling lanes. The next day, I developed a high fever, cough and 5 days later (that's when I went to the doctor) I was diagnosed with pneumonia. I was put on medication to help and got better. About 5-6 weeks later, I started loosing my hair. It started with small, round patches and increased to shedding. I went to a general practice physician. Upon physical examination, he noticed that my thyroid was enlarged. (T3 and T4 tests were normal). He sent me down to ultrasound that day and it showed 2 nodules, one in each side, of my thyroid. One was small, nothing to worry about, but he sent me to a surgeon to have a fine needle biopsy of the other. The surgeon had to do 2 biopsies, one week apart, due to him not being able to get enough cells at the first biopsy. The biopsy results showed a follicular mass. He referred me to Siteman Cancer Center in St. Louis, Missouri. My slides were sent up to them and reviewed before my appointment but the doctor I was going to see set me up with ANOTHER biopsy before I even saw him on the day of my appointment with him. He said it was nothing and sent me on my way. I went to an internal med physician who did the normal thyroid testing and my levels were normal. He did say that he had done a specific autoimmune test and that my results were off the chart. He stated that it was probably an autoimmune issue causing my hair loss, fatigue, bone and joint pain, swollen eyes, etc. But, he didn't want to put me on any Synthroid because my results were within normal limits. Nothing accomplished from that doc...strike 2. Sought out a dermatologist who looked at my head and did injections to my scalp. When that wasn't producing good enough results, she used some kind of acid on my head to produce a reaction. Unfortunately, I had a severe reaction to that. Went to see a derm "genius" up in St. Louis, Missouri. He put me on Cyclosporine and...my hair was starting to grow back!! Unfortunately, with being on Cyclosporine, you have to have monthly bloodwork. After month 2, my bloodwork came back that I had tested positive for TB. So, he made me immediately get off of the Cyclosporine and see an infections disease doctor. She put me on a combo of drugs to kick the TB. (Chest xray was normal). I was to take the meds once a week for 6 months. A combo of 9 pills that had to be taken in front of a health department employee to make sure that I was taking them and wasn't going to cause an outbreak, I'm guessing. I was asymptomatic. No cough. No sputum. Nothing. After the 2nd week of treatment I got very, very sick. Fever, chills, vomiting, nausea, and severe headache. Went back to infectious disease doctor who, upon checking into her office, checked my blood pressure and it was sky high (186/110). She wanted to admit me into the hospital but I refused. She put me on BP meds and told me to stop the TB drugs until this could be gotten under control. She did a urinalysis and it showed some kidney issues. So....off to the kidney specialist I went. By the time that I saw him, my kidney function was normal again. I have contacted the derm genius and asked to be put back on the Cyclosporine but he won't do it until I have completed TB treatment. I can't complete the TB treatment because it makes me sick. It is a latent form only, not active. Still my main concern is my hair loss and small joint pain, etc. I have tried and tried to relay this information to several docs and no one can pin point what is wrong with me or point me in the right direction. My test for Lupus was equivocal, not positive, not negative. One of the docs suggested Hashimotos Thyroiditis. I'm concerned still about the thyroid mass and the fact that if it is an autoimmune disease that is attacking my thyroid and hair follicles, which one is it and what can I do to get a definitive diagnosis and treatment. I am in the medical field but cannot diagnose myself. HELP!
posted on
Fri, 14 Nov 2014