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I Have Graves’ Disease: What to Know About It and the Risk for Thyroid Eye Disease

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This post is sponsored by Horizon Therapeutics

Standing at the front of my classroom, I could feel my heart racing as my 8th graders milled about, waiting to take their seats until the final moment when the bell rang. A quick glance at my watch proved my heart rate was much higher than normal. I had no idea that what I was experiencing would result in a diagnosis of Graves’ disease and a constant need to listen to my eyes.

The Importance of Listening to My Body

I’d felt my heart race with nervous excitement as a new teacher, but I was a veteran teacher. I often felt this way on the first day of school with the anticipation of meeting students at the start of a new year, but it was late February. We were well into the school year and the routines that came with each class period. There was nothing unusual about my day to make my heart behave this way.

The sensation disappeared after I started to go through the day’s lesson but became more frequent over the next couple weeks. Sometimes my heart rate would spike sitting at the dinner table. Other times I’d wake up in the morning and be getting ready for a day of teaching and notice my heart was beating quickly. Having a higher heart rate during non-strenuous activities in various parts of my day seemed very strange.

How Heart Rate Data Led to My Graves’ Disease Diagnosis

As a half marathoner and OrangeTheory Fitness fanatic, I’ve been wearing a heart rate monitor that connects to my Garmin watch for the past 5 years. I love seeing the stats that come from my workouts. I also know my typical resting heart rate and my body’s cardiac response during various parts of my OrangeTheory workouts thanks to these devices.

For those not familiar with OrangeTheory Fitness, it’s heart rate-based interval training consisting of rowing, cardio, and strength training in a 60-minute class. The 5 heart rate zones, resting, easy, challenging, uncomfortable, and All Out, correspond to colors (gray, blue, green, orange, and red). They indicate when to push harder and when to pull back for recovery. Spending 12 minutes or more with your heart rate elevated in “The Orange Zone” boosts metabolism and helps burn fat and more calories.

I’ve regularly attended OrangeTheory for the past 5 years, taking 3-4 classes a week. We always start class with a 5-minute warm up where my heart rate is typically 105-120 beats per minute (bpm). This puts me in the blue zone, sometimes I get to the green zone (120-140 bmp) at the very end of the warmup.

The first time my heart rate reached the red zone during a warmup, I thought it was a fluke. It’s unusual for me to reach the orange zone and be working at 84% of my targeted heart rate (typically 144-156 bpm) during the first few minutes of class, let alone over 90%. During the next two workouts, I saw the same thing happen during warmup.

One night when I sat down on the couch to wind down and watch TV, my heart rate spiked again. My Garmin watch notified me of unusual heart rate activity, so I opened the Garmin Connect app on my phone.

I scrolled back through the past two weeks of heart rate data and discovered my resting heart rate averaged 80 bpm. Normally under 60 bpm, my heart rate had been measuring 74-90 bpm over the past week.

As a healthy, active individual who hadn’t ever experienced cardiac related health issues, I knew I needed to see a doctor. I couldn’t ignore more frequent spikes in my heart rate and higher resting heart rate. I knew something was wrong even though I had no other symptoms and felt fine.

Visiting Urgent Care during COVID wasn’t on my weekend agenda but after waking up and having my heart rate spike shortly after, I found myself in an empty waiting room. I spoke with the receptionist through plexiglass from over 6 feet away. I practically had to frisbee my insurance card to her, hoping it would slide through the narrow slit between the desk and plexiglass.

Once in an exam room, I described my symptoms to the doctor. My resting heart rate was in the normal range while we were talking. I scrolled through my heart rate data to provide a historical perspective from the last two weeks.

Vitals were taken. Bloodwork was done. I left with the directive to make an appointment with my primary care physician (PCP) to review my lab results.

Later in the week, my PCP asked me many of the same questions as the urgent care doctor did. She also noticed that I had lost almost 10 pounds since my last visit. The combination of weight loss, elevated heartbeat, and high levels of thyroid found through my bloodwork indicated an autoimmune disorder called Graves’ disease.

What to Know About Graves’ and Thyroid Eye Disease

My doctor explained what Graves’ Disease is, possible causes of Graves’ Disease, and referred me to an endocrinologist.

When I met with the endocrinologist, she asked me some specific questions about my eyes, such as:

  • Did I feel any eye pain or pressure behind my eyes?
  • Had I noticed any bulging of my eyes?
  • Was I experiencing double vision?
  • Were my eyes sensitive to light, watery, or dry?

Wait, my eyes? When I learned I had Graves’ disease I was surprised to be talking about my eyes. I wasn’t experiencing any of the eye symptoms she asked about, but she told me about Thyroid Eye Disease (TED) and that up to 50% of people with Graves’ disease may develop TED.  

Like Graves’, TED is an autoimmune disorder. Graves’ disease affects the thyroid while TED affects the muscle and fat behind the eyes. They are separate, but related conditions.

Image courtesy of ThyroidEyes.com

Many with thyroid conditions like Graves’ may develop TED, but each disease requires different doctors and different treatments. Surprisingly, many people can live with Graves’ for years without ever learning about TED, even if they experience eye symptoms like bulging, pain, or double vision. It was helpful that I learned about TED when I received my Graves’ diagnosis. Thankfully, my doctor was up to speed on the differences between Graves’ disease and TED.

Image courtesy of ThyroidEyes.com

While I wasn’t experiencing TED symptoms at the time of my Graves’ diagnosis, my endocrinologist explained they can progress over time.

In between regular visits to my endocrinologist for blood work to monitor my thyroid levels, I’m taking medication for Graves’. I’m mindful of monitoring for TED symptoms like bulging, redness, dry eyes, watery eyes, pain, double vision, and light sensitivity and any changes in my eyes.

I know to contact my endocrinologist immediately if any eye symptoms present so they can refer me to a TED Eye Specialist – an ophthalmologist with advanced training in diagnosing and treating TED. Track TED symptoms and seeking treatment early is necessary to prevent the progression of TED which can lead to serious eye damage. 

Listen to Your Eyes: The Importance of Focusing on Eye Health 

In honor of July being Graves’ Disease Awareness Month, it’s important to know about the potential risks of TED. Whether you’ve been living with Graves’ for years or have been recently diagnosed, it’s not too late to focus on your eye health.

Listen To Your Eyes provides the following tips if you’ve been newly diagnosed with Graves’ or experiencing symptoms of TED.

To learn more about the symptoms of TED or to find a TED Eye Specialist near you, visit FOCUSonTED.com.

This post was sponsored by Horizon Therapeutics, but all opinions are my own and based on my experience being diagnosed with Graves’ disease. If you think you may have Graves’ or TED, please contact your doctor to be diagnosed and treated for these autoimmune disorders which require being vigilant about monitoring your symptoms.