How my Apple Watch kick-started my convoluted journey to getting diagnosed with an uncommon medical condition

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How my Apple Watch kick-started my convoluted journey to getting diagnosed with an uncommon medical condition
The author at the 2022 Kentucky Derby miniMarathon and the 2022 Malibu Half Marathon.Josée Rose
  • My Apple watch showed my daily average heart rate was 90 or above — which is really high for me.
  • I made a virtual medical appointment and brought three months of heart-rate data from my watch.
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I was sitting on my couch in July, trying to cool off from another 90-degree day, and I glanced down at my Apple Watch. My heart rate was over 90.

I thought it was odd. Ever since I started running when I was 25 — completing six marathons and about 30 halves — I've had a low heart rate. Now, at 42, I'm still a pretty active person: I regularly ride my Peloton and run twice a week; I see a personal trainer for strength training (and to meet my goal of doing one strict pull-up). The highest my heart rate usually gets when I'm on the couch is about 80 beats per minute, and that's during a scary movie.

Since I had seen a cardiologist and gotten a normal EKG in May, I was confused.

I restarted my watch. I restarted my phone. I double-checked my heart rate myself. Nothing changed — it was still above 90.

For the next week, I became obsessed with checking my heart rate on my Apple Watch — when I was on the couch, when I was at my desk, when I woke up in the morning, and when I was out on walks.

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It was always too high.

I noticed other unusual things too — my heart rate would spike when I went for a run or rode my Peloton and I'd have to stop. I was constantly sweaty, including when I was sleeping — but I brushed it off. After all, it was a heat wave.

I mentioned all this to a close friend whose husband died from a heart problem at 42, and she urged me to see a doctor.

Little did I know, it would be the beginning of a convoluted journey.

As my appointment approached, I started worrying that my concerns would be brushed off, so I wanted to come armed with data. I pulled three months of data on my heart rate from my Apple Watch using a third-party app. As I sketched it out on paper, it showed a clear pattern — my average heart rate had been steadily climbing, from the 70s in May to closer to 90 by the end of July.

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In early August, I had my virtual visit with a One Medical physician assistant. I explained my problem, referring back to my data. I remember specifically saying, "I know the normal average heart rate is between 60 and 100, but for me, having a heart rate of over 90 consistently when I'm doing nothing is not normal."

After peppering me with the usual "Are you stressed?" "Did a life-changing event happen?" "Is your job OK?" I said, "I feel like something is not right." Finally, the PA suggested I get bloodwork to test my thyroid.

Of course, I then went down a Google rabbit hole. I'm ashamed to admit that I wasn't 100% sure what the thyroid does. I learned that it plays an important role in regulating your metabolism, and when it's out of whack, your heart can race and you can feel hot and sweaty all the time.

How my Apple Watch kick-started my convoluted journey to getting diagnosed with an uncommon medical condition
Peloton BikePeloton

Things went from bad to worse

I finally accepted that I was sick the day after my appointment when I struggled to complete a 30-minute Peloton Classic Rock ride. It wasn't challenging, but my heart rate was a good 15 points higher than usual.

A few days later, I felt much worse. I was easily fatigued, I could hear my heart pounding, and it was a challenge to climb the steps to my apartment. I was waking up in the middle of the night feeling like my skin was on fire. I was severely uncomfortable all the time.

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As soon as I got my bloodwork results, I took a screenshot and sent it to my endocrinologist friend. "Real deal, darling. You have an overactive thyroid. You will be okay, I promise," he texted back.

I went back to my cardiologist to double-check my heart and then tried to find an endocrinologist in New York City. I called Weill Cornell since I'm already in their system, but I was told I couldn't get an appointment until 2024.

One Medical had given me a referral to Mount Sinai, but the earliest appointment I could get was for September 8. I was disappointed and frustrated at the prospect of another month of feeling terrible.

Luckily, my cardiologist was available immediately. After an EKG, a heart scan, and four days of wearing a heart-rate monitor, I was told that "I have a beautiful heart," and it was doing its job by reacting to my overactive thyroid.

While I was at the cardiologist's office, I got a text informing me that I'd be able to see the endocrinologist the following day. I couldn't believe it. I actually sent the text to a friend to ask him to read it to make sure I wasn't seeing things.

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How my Apple Watch kick-started my convoluted journey to getting diagnosed with an uncommon medical condition
Checking a patient's thyroid.peakSTOCK/Getty Images

I'm glad I didn't ignore my body's signals — and my watch backed me up

The endocrinologist was upfront with me. She said she suspected I had Graves' disease, an autoimmune disorder that can cause "your thyroid to act like it's a VCR stuck on fast-forward." She told me that all of my symptoms pointed to an overactive thyroid and ordered more bloodwork, which confirmed her suspicions.

She prescribed two medicines: a beta blocker to help stop my heart from racing, and methimazole, which is meant to slow down my thyroid.

Nearly five of 100 Americans ages 12 and older have hypothyroidism, or an underactive thyroid. Hyperthyroidism — what I was experiencing — occurs in about 1% of people over the age of 12, and it affects women more often than men. Graves' disease is one possible cause of an overactive thyroid.

It's been about two weeks since I've seen her and she's adjusted my medicine twice. She explained that it could take at least a month for me to start feeling normal again and to take things slow and relax — no high-intensity workouts for now. After dealing with minor side effects from the medicines, I'm finally starting to feel like myself, and I'm hopeful I can have a fun upcoming break at the Jersey Shore.

I'm glad I didn't ignore my body's signals — and that I had hard data from my Apple Watch to back them up. The symptoms of thyroid problems can be vague, and it would have been easy for me to brush them off. Maybe I would have convinced myself I was just out of shape.

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Being a runner can increase the difficulty of getting a diagnosis, as Runner's World has reported. But as a runner, I was in touch with my body — and I had hard data, too.

I know that I'm lucky — I have good medical insurance, I understand our healthcare system, I have a job that allows me the flexibility to take care of medical issues, and I have the confidence to say, "Something isn't right. Can you please look into this?"

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