Living with a Body That Attacks Itself

This post is sponsored by Horizon Therapeutics.

My journey with Graves Disease goes back about 14 years ago. When I was 28, I attended the Michael Buble concert and met some friends at Kansas City Power & Light District afterward. I started feeling dizzy and asked my husband to find me a chair, which in the middle of a crowded bar was nearly impossible.

The next thing I remember was waking up on the sidewalk outside the bar with a fireman leaning over me. Apparently, I had passed out and my husband and some friends carried me outside to get fresh air. I was out for several minutes. I’m sure the fireman thought I was just an over-served 20-something…  along with everyone else that watched the event happen. That was not the case.

I knew something was off with my health — I had been feeling weird for weeks. My heart would palpitate, and I would get dizzy if I had to stand for long periods of time. My clothes were loose (but, I wasn’t trying to lose weight). I would get short of breath walking up stairs.

I went to see a doctor, and they ran bloodwork and did a battery of tests on my heart, brain, etc. Most everything checked out, except my bloodwork showed that my thyroid levels were very high and outside the normal range. I was referred to an endocrine specialist, who diagnosed me with silent thyroiditis, a virus that attacks the thyroid. There was no treatment, and I had to return for bloodwork every few weeks but the issue would resolve on its own with time.

Our year anniversary was right around the time my thyroid symptoms started.

Being recently married and approaching our 30s, we were anxious to start a family, but I was told not to try to conceive until my levels returned to normal. With thyroid conditions, abnormal levels could cause miscarriage or other issues with fetal development. Finally, after a year of monthly bloodwork and check-ups, my thyroid levels returned to normal. I went on to have three healthy pregnancies and forgot all about my thyroid issues, thinking they were in my past.

After Anna was born, my symptoms flared again.

After the birth of my third child, I started feeling off again. It was very hard to describe to other people as I looked healthy on the outside and most of my symptoms could be attributed to just being a busy, tired mom with three kids. I had extreme fatigue, muscle weakness, heart palpitations, shaky hands, body temperature changes and was the lowest weight I had been since before I got married.

I went to my primary care doctor for bloodwork, and they found thyroid levels out of the normal range again. I was again referred to an endocrinologist who did an extensive workup and found I had the antibodies for Graves Disease, an autoimmune disease that causes the thyroid to become overactive and produce more thyroid hormone than the body needs. Learning that I had an actual disease was scary, but there was also a sense of relief that they finally figured it out, and it wasn’t all in my head.

For the past five years, I’ve had regular visits with my endocrinologist, donate about eight vials of blood every three months to the lab and have good days and bad. I’m lucky that my Graves Disease is manageable without medication, as the treatments have side effects and are often riskier than the disease itself. My symptoms fluctuate, and most days I feel completely fine. But, there are usually several off days each month where the extreme fatigue, muscle weakness, heart palpitations and shakiness flare. I know to take it easy on those days and let my body rest. With autoimmune diseases, your body is literally attacking itself… so I have to accept when it’s acting up and make sure I rest, eat well and give myself a break. Graves disease can affect my body in other ways as well – brittle bones, heart issues, anxiety, and makes me more vulnerable to developing other autoimmune diseases. I always have to stay on top of my symptoms and wonder what is next.

Recently, I learned that fifty percent of people with Graves Disease are at risk to develop Thyroid Eye Disease (TED).

TED is a rare and serious autoimmune disease that can get worse over time, causing eye bulging, double vision and terrible pain, and even blindness in more severe cases. If not treated early, TED can cause serious damage to vision and appearance of the eyes. I do occasionally suffer from dry, itchy eyes and always assumed this was attributed to allergies or sensitivity to my contacts. I hadn’t thought about this being related to my Graves Disease or a new condition I could develop altogether. Part of my health plan will now include paying better attention to my eye symptoms and visiting a Thyroid Eye Specialist for annual check-ups.

If you or someone you love has Graves Disease, pay attention to any eye symptoms. If you notice changes in your eyes, like bulging, light sensitivity and pain, don’t just assume those symptoms are part of Graves disease. Write down any eye symptoms you or a loved one might be experiencing and report them to a TED Specialist – such as an oculoplastic surgeon or neuro-ophthalmologist. To find a nearby TED Specialist and other resources, visit www.FOCUSonTED.com.

Laura is wife to Marty, and mom to Michael (11), Joseph (9) and Anna (5). She spends most of her days juggling working from home, shuffling kids to activities and can usually be found cheering on the boys from the baseball stands. She is born and raised in Kansas City, graduated from KU (Rock Chalk Jayhawk!) and has spent most of her career in advertising sales. She loves big Italian family dinners, trying out new restaurants in Kansas City on a rare date night and can never say no to an impromptu dance party with her kids.

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