The cooler, rainy weather has me not feeling so good today. The weather seems to really affect my CRPS! I’ve had a lot of stinging, stabbing nerve pain today. Which makes it really hard to focus on anything. Earlier today, I was attempting to study when my phone rang. It was my endocrinologist’s office saying they had gotten back my latest lab results and my TSH was high. She said they were calling me in some Synthroid and they would do some follow-up lab work in May to make sure my levels come down.
Let’s back up a little to June 2017, I started having heart palpitations. I had had these for awhile, but they were noticeably increased. I assumed my potassium was low since I had had the same issue before when my potassium was low. So, I call my family physician for a lab draw. My potassium came back normal. But the TSH he added on, came back low (meaning my thyroid was overactive or hyper). In the meantime, I notice on my Fitbit that my heart rate getting up into the 140’s while I was resting. The palpitations continue getting worse and I lost about 10 pounds! On top of all this, I was feeling very anxious, which was not normal for me.
Long story short, my endocrinologist won’t see me until I go to the ER. My endocrinologist is at a different hospital than where I work, as my hospital doesn’t have an endocrinologist. I go to the ER, who says I need to see endocrine. I’m frustrated because I know I need endocrine, but endocrine won’t see me until I get cleared by ER for the heart issues. Anyhow, I finally get an appointment with the endocrinologist who redraws my labs and finds that I’m hyperthyroid and diagnosed me with Graves’ disease. I start on a medicine called, Tapazol which I continue taking until just before my surgery in May 2018. While on Tapazol, I had to have monthly lab draws to make sure my thyroid was responding appropriately and not too fast. Since I stopped taking Tapazol in May, I have had regular lab draws to ensure my thyroid wouldn’t become hyperactive again.
Since I started getting my labs drawn, when I was 21, I have always been more on the hyperthyroid side. I also have a thyroid goiter with nodules that I have to get an ultrasound on a couple times per year. So, imagine my surprise when I get the call that my thyroid was under active! I immediately get on my phone and type in CRPS and Hypothyroidism. Guess what I find? 30% of all CRPS patients have Hypothyroidism! Now, recently I was taught that: correlation does not equal causation. I was taught this in a rather embarrassing way, but we learn best from our mistakes and I doubt I’ll ever forget that one! Ha! So, I can’t say for certain that I have Hypothyroidism from CRPS. However, it’s a big coincidence if it isn’t related. For other CRPS sufferers out there, ask for a TSH level yearly! It’s a quick and easy blood test! CRPS affects people, way more than the area that is painful! I’ve said before and I’ll say it again, we have to be self-advocates! Don’t rely on anyone else, do the research yourself and know your body! Ask questions and don’t be afraid to stand up for yourself!
Resources:
Complex Regional Pain Syndrome: Systemic Complications. (n.d.). Retrieved March 25, 2019, from https://www.google.com/amp/s/www.practicalpainmanagement.com/amp/11877
Ami’s Journey 