Judy had been living an active lifestyle after she retired as a library assistant for Portland Public Schools for 30 years. She kept up with her lifelong love, ice skating, went hiking and camping– as she puts it, “pretty much outdoors-y stuff.” In 2013 though, she began a health journey to deal with her thyroid that fluctuated from under-active to overactive. Finally she discovered she had thyroid eye disease, a disease that threatened her ability to see and continue doing the activities she loved. She spent the next few months learning what that meant and what she could do about it.

Thyroid Eye Disease

Thyroid eye disease (TED) is a progressive, rare autoimmune disorder that can eventually rob patients of their ability to see. It causes a range of eye issues, including double vision, sensitivity to light, swelling, dryness, grittiness in eyes, tearing, redness, irritation, and bulging. The disease is caused by autoantibodies which activate a signal on the cells. It leads to the severe inflammation and swelling of the cells, muscle, and tissue behind the eye. The progressive disease can cause long-term damage to the patient’s vision.  TED often occurs in people who are living with Graves’ disease, which is an autoimmune disease that causes hyperthyroidism, but is a separate disease that needs to be treated differently. Further, TED tends to limit the affected person’s independence and daily life.

Her Diagnosis

Judy described how she went through the full range of thyroid activity. After her 2014 diagnosis reporting that she had low thyroid activity, she went on a thyroid medication that catapulted her into having a thyroid levels that were way too high, and was put on medication to lower it again. When she went to a check up later, she describes how her doctor inquired if she had any vision issues. She didn’t, but the doctor told her to get in touch with her optometrist if any began. Judy said,

“It was like night and day. When I woke up the next day, it was a totally different story. If I looked forward it was fine, but if I looked up or down or to the side, everything doubled.”

How Her Double Vision Impeded on Her Life

Her double vision began to affect many dimensions of her daily life. She couldn’t read because she’d see two sentences at once. She describes that the same happened when she wanted to bike. Judy said, “Its like living with your eyes crossed and nothings quite where it should be. So I stopped biking, because you’re going pretty fast on the bike and I’d miss seeing road hazards.” The same went for driving. She instead had to rely on her husband if she wanted to go get groceries or go shopping. Even sleeping was difficult because the disease characteristically pushes the patients eyes out, making them difficult to shut. She slept with an eye mask to keep her eyelids closed, though she notes her eyes never pushed out as far forward as many who have the disease. She couldn’t see close up to put on make up; she describes how she was affected by her altered appearance. She found it difficult to look at herself in the mirror. She felt like everyone was staring when she went out, so she stayed home instead. Instead she spent time gardening, walking around the yard, but she said, “Otherwise, I didn’t do much of anything. It was a lost spring and summer.”

Searching for Treatment Options

After seeing first her eye doctor, he recommended she go to the Casey Eye Institute in Oregon. Here, she learned about an experimental study that her doctor thought she might be interested in. TEPEZZA was a medicine that at the time was in trials, and has since been approved by the FDA as the first ever medicine for TED. The medicine is a fully human monoclonal antibody administered to patients once every three weeks for a total of eight infusions.  She describes that before finding out about TEPEZZA, she felt panic when she realized that surgery was the only other option, needing to undergo multiple surgeries, and there was no guarantee that her symptoms would be resolved. After consulting a neighbor with relevant expertise, she decided she was in and would participate in the clinical trial.

The Infusions

She began the six month process of eye measurements, blood tests, questionaires, and infusions. She describes how the infusions took about an hour and the researchers gave her lunch after. She thought maybe the lunch was to keep her there in case she had an immediate reaction. The day after the infusions, she felt tired and had no interest in eating. She went through this every three weeks. After the third infusion, she already noticed her vision clearing up and her appearance becoming more familiar. After seven or eight months, she found she could see quite well, and finally, everything was starting to look good.

She said, “If you’re not overly afraid of needles and you don’t mind sitting in a clinical situation, it’s fine. I would definitely do it again, and I would recommend it to anyone else too. It’s a one time deal and it’s going on 5 years now since the infusion, and I’ve maintained my vision.”

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She describes her gratitude at the circumstances that let her regain her vision and prior life. She said, “[I’m grateful] I was in the right place at the right time with the right set of doctors, who said ‘Gee, you better go and get that experimental drug.'” She said she learned through all of this how wonderful the medical field is. Not even her own doctor knew about this study, since it’s a niche study for a rare disease. For her to find the treatment she needed, she explained you have to put in the effort to find the right people who can help you. She explained, “[You have to] be really insistent with the doctor about your own health, because I think some doctors have to be educated about this new drug that really works.”

Patients who suspect they might have TED can visit TEDSpecialist.com to find a nearby specialist who can conduct an eye exam and help determine next steps.