Positivity POTS EDS MCAS

August 17, 2021 – the day everything changed. I went to bed that night thinking everything would be fine and I would be onto my normal work activities the next day.

2:00 a.m. and I shot up in bed. My heart was pounding, my vision was gone, I felt faint, I was sweating through my clothes, I was having trouble breathing with chest pain and I soon became unsure if I was going to make it. Evan called 911 and I was quickly at Beverly hospital.

I didn’t feel right at all – it was really hard to explain. Standard blood work was within the normal limits and my EKG was normal. A thyroid panel was run and sure enough my TSH was elevated at 11.85 and my T3 was slightly elevated outside normal limits. The emergency room doctors all thought they uncovered it – this was all due to an issue with my thyroid.

Off to primary care the next day for a follow up. They chose not to repeat labs to see if anything changed. I was started on a very high dose of Levothyroxine. Something still wasn’t right – I could feel it.

Day 8 of Levothyroxine, I started feeling worse. Evan headed to the grocery store to ensure we had food for the week. I stayed home on the couch because I had no energy. All of a sudden, I was sweating through my clothes and my heart rate shot up to 160. I felt like I was going to pass out. I crawled to the freezer to get some ice packs to cool myself down. I had no control of my temperature and quickly started convulsing and my body started to get really cold. I couldn’t get my heart rate down and was having severe chest pain. My body was bright red, which I now know is flushing. I called Evan frantic. He was scared, I was scared.

Back in the ambulance and off to the hospital again……..