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Tips for Tracking Thyroid Eye Disease Symptoms

Jessica Hanson's avatar image

By Jessica Hanson

3 min read

It was a scary moment when I first realized that my eyes were changing. I had been practicing makeup techniques for my wedding later that year, and something was off. I could not pinpoint what it was, so I removed the makeup and started again. Still wrong. More makeup remover. Try again. One more time. I started to get upset, sent some pictures to my mother, and she was the one who recognized the change.

The next few years with Thyroid Eye Disease (TED) were (to put it mildly) a stressful process, and trying to track symptoms through the mirror alone was difficult, like watching my hair grow. Eventually, I found that I needed to stand back and look at the bigger picture over time.

My recommendations for tracking symptoms of TED

Looking back over the past three years, here are my recommendations for tracking symptoms:

  • Photos- Though I grew to dislike taking photos of myself, these photos were strictly for a medical purpose. I did not need to frame them, they did not need to be Instagram-worthy. I recommend taking photos at regular intervals (ie weekly, twice a month, monthly - your doctor may have a preference) so you and your healthcare team can see the progression clearly over time. I also recommend taking photos facing forward along with profile photos on each side.
  • Consistency- Whenever possible, I took these photos at the same time of day, in the same room, with the same lighting (artificial light in a bathroom for example will be more consistent than seasonal natural light by a window), no flash, without makeup, using the same camera orientation (vertical selfie), etc. I found that facing forward, relaxing my face, looking straight into the lens, and trying to make my photo as bland as possible created the most consistent photos. Navigating different angles, poses, facial expressions, and lighting makes it very difficult to see how symptoms are truly progressing.
  • Create a folder- Having the photos together in one spot is helpful when comparing images. I highly recommend picking a non-triggering photo for the thumbnail image (how about something soothing not related to TED at all, like a sunset?). Though they were helpful for tracking symptoms, these photos did not make me happy, and I did not need a reminder of my medical condition every time I opened the photo app on my phone.
  • Include old photos for reference- I was sure to include a few photos of what I looked like the year prior to my diagnosis. Several happened to be close-ups where I was looking straight forward at the camera. I added a few others featuring different angles and facial expressions. My ophthalmologist asked to see these several times, so it was helpful to have them handy.
  • Create a timeline of important points and dates- My journey continues to be very long and complicated, and it really helped to have a timeline written down. Mine included when I started to experience symptoms of both Graves’ disease and thyroid eye disease, when I was officially diagnosed, when different treatments started and stopped, and when my thyroid levels stabilized.
  • Keep a symptoms diary- Many TED symptoms are not visible in photos. Watery eyes, dryness, pain, vision changes, swelling - keeping a diary of when these symptoms happened, how long they lasted, fluctuations, things that provide relief, etc can be important. This can also be a helpful tool for your doctor in determining when symptoms stabilize. (Remember to contact your doctor right away if you experience pain or vision changes).
  • Create a summary for your doctor- Before any given appointment I would look back over the previous few weeks/months and create a summary of my symptoms and experiences, noting any patterns or growing concerns.
  • Make a list of questions and take notes- My doctor has learned that I show up to every appointment with a list of a dozen questions. Preparing for these appointments in advance helped me better express my concerns and needs. I took thorough notes throughout our discussions, which helped me stay on track and create a roadmap for the future.

    • In conclusion

    TED often made me feel like I had no control. I was at the mercy of this autoimmune condition, and the wait for meaningful treatment was excruciatingly long. While these tools could not help me regain control or lost time, they did help me feel prepared and helped me collect important information that was necessary for my treatment.

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