When You Only Tell Your Doctor Half the Story

For people living with chronic autoimmune conditions, such as Thyroid Eye Disease (TED), regular patient-doctor visits are an important part of tracking symptom progression and staying on top of care. Findings from a recent survey of 116 U.S. adults living with TED reveal a significant gap in communication at these appointments — with only 36% feeling comfortable enough to share the impact of their TED symptoms on their emotional well-being.

TED is a rare autoimmune condition that causes debilitating symptoms including eye bulging, eye pain, pressure behind the eyes, dry or watery eyes, light sensitivity, double vision and even vision loss in some cases. It most often occurs in people who have thyroid conditions, like Graves’ disease (hyperthyroidism) or Hashimoto’s (hypothyroidism), and typically affects people aged 40+. Women are up to five times more likely to develop TED than men, and smoking increases the risk of developing TED eightfold.

The Unspoken Toll of TED on Daily Life

According to a new national survey of 116 adults diagnosed with TED, when TED symptoms are at their worst, a majority experience difficulty with common everyday tasks, such as: using a mobile device (81%), watching TV (73%), reading books or magazines (72%), going out in public (67%) and doing their job (66%). And while more than a quarter of adults living with TED (29%) reported having to stop driving at night due to TED symptoms, almost half (49%) admitted they would not report a change of this sort to their doctor. In fact, while 89% of adults with TED are likely to report physical TED symptoms during a routine check-up, only a third (36%) of patients shared they would report how TED was impacting their emotional well-being (e.g., experiencing anxiousness, depressive feelings, decreased self-confidence, or feelings of anger or frustration).

Doctors are Left in the Dark

A new survey of 102 ophthalmologists, endocrinologists, oculoplastic surgeons and strabismus specialists and surgeons who treat or refer for TED across the U.S. found that nearly one in four doctors (22%) reported their TED patients “rarely” or “never” bring up the impact of TED on their emotional well-being. The course of the conversation could change how their condition is treated, however. Of those surveyed, doctors reported they would start a new treatment, consider modifications or discuss other options when a patient reported symptoms affecting their emotional well-being (83%), independence (78%), or personal life or relationships (72%).

“I used to think my anxiety was just something I had to deal with, I didn’t want to burden my doctors with it so I didn’t talk about it. I realize now that sharing how my TED symptoms affected my day-to-day life and my mental health, would have helped my doctor better understand the full effect that TED had on every part of my life. I believe it would have helped me get the best possible care.” – Gail S., who lives with TED.

Open and Honest Dialogue Can Go a Long Way

Doctors and patients each play an important role in creating open dialogue. The more doctors can ask about the impact of symptoms on emotional well-being, and the more people living with TED or other conditions are willing to share, the better their care can be. For more information on TED and to find a TED Eye Specialist, visit FOCUSonTED.com.

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Amgen commissioned Atomik Research to conduct an online survey of 116 adults diagnosed with Thyroid Eye Disease (TED) and 102 healthcare providers who treat or refer for TED across the United States. Fieldwork for adults with TED took place between Sept. 20 and Oct. 12, 2023, and between Sept. 20 and Oct. 2, 2023 for healthcare providers.

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