Clearing Up Misconceptions about Thyroid Eye Disease

with Raymond Douglas, MD, PhD, and Elena Christofides, MD

How would you know if you have thyroid eye disease (TED)? The main symptoms include bulging eyes, a pronounced stare, inverted eyelids, dry eyes, excessive tearing of the eyes, double vision, eyes looking in two different directions, and in the most serious cases, vision loss.

According to a survey of people who have Graves’ disease, are at risk of TED, and others without a thyroid condition,yet the individuals with a higher risk of developing eye problems aren’t always aware that this is a distinct possibility for them.

More disconcerting, even among individuals who have already been diagnosed with thyroid eye disease, there seems to be little awareness of the risk of symptom recurrence or a clear understanding about what treatment options are available and recommended to manage this condition.1

Survey Says....Greater Awareness of Thyroid Eye Disease Needed

There were 300 individuals with TED, Graves’ disease, as well as a similar number of sex and age-matched healthy individuals who completed a 20-question survey about thyroid eye disease.1 While those who have thyroid eye disease and most with Graves’ disease indicate better knowledge than people who have not been diagnosed with thyroid disease, there are some notable misconceptions held by most participants.

The authors report finding that:1

  • Most individuals, it appears, seem not to grasp the increased risk that comes with not having good thyroid control as well as the added risk that faces those who still smoke cigarettes.2
  • Half of all people with Graves’ disease and just 40% of individuals with a diagnosis of TED recognize that this related condition can occur even among those who do not even have hyperthyroidism, as thyroid eye disease may arise in someone with hypothyroidism or even euthyroid (a normal thyroid status).

There is also some confusion about the role of thyroid surgery (ie, thyroidectomy) in treating TED. While thyroidectomy, radioactive iodine, and antithyroid medications may be advised to address hyperthyroidism, to date, only surgery has been available to alleviate bothersome symptoms of the thyroid eye disease until now.

The survey seems to emphasize a more global lack of knowledge, Elena Christofides, MD, FACE, an endocrinologist at Columbus, Ohio-based Endocrinology Associates, who says she is impressed at the levels of understanding demonstrated by many individuals responding to the questionnaire. “Their knowledge is probably higher than a lot of residents-in-training could offer,” says Dr. Christofides.

Patients need to know that thyroid eye disease can occur “at any time, in anyone, whether they have thyroid disease or not,” she tells EndocrineWeb. “A healthy lifestyle that emphasizes the need to reduce stress and avoidance of smoking are always the most important steps to take regardless.”

Certainly, whenever you have any concerns about a change in vision, you should see an eye care specialist, say these experts. Both optometrists and ophthalmologists are trained to be able to assess for and treat thyroid eye disease if this is deemed to be present. “If you feel your eyes are puffy, red, irritated, or overly dry, these can be symptoms that should be evaluated,” says Dr. Christofides. "While these aren’t very specific symptoms, they usually present as the first signs that a patient has Graves’ eye disease."

Closing In On More Effective Treatments for Thyroid Eye Disease

Needless to say, if you are among the estimated 20,000 patients experiencing active TED in any given year,3 it will come as a huge relief to learn about some effective new treatments. Since there is as yet no treatment for thyroid eye disease, it behooves you to stay alert for new treatments that are approved to manage thyroid eye disease as you may benefit from advances in treatment as time goes on.

Results of the OPTIC trial suggests that, finally, we may be closing in a the first effective therapy.4

The drug, teprotumumab, for example, is a biologic drug made of human monoclonal antibodies. The effectiveness of this medication appears very good following eight doses of this medication given intravenously to patients with TED over 24 weeks.4

An improvement in symptoms was experienced by more than 80% of the participants,3 says Raymond Douglas, MD, director of the orbital and thyroid eye disease program at Cedars-Sinai Medical Center in Los Angeles, California, who presented the data at the AACE 2019 meeting in San Francisco, California.  

This is incredibly positive since slightly more than half of the patients participating in an earlier trial, who were followed for an additional 48 weeks, continued to see improvement in their symptoms as long as they remained on the medication, says Dr. Douglas. Better yet, the main finding of the OPTIC trial is a reduction in eye swelling. Other outcomes included improvement of double vision and better quality of life, which showed improvement in TED symptoms in the study.4

When the trial was designed, Dr. Douglas and the research team weren’t sure how much of the drug (meaning the dose) would be enough. “We figured that the inflammation might get better, but the more problematic cases might require more treatment [ie, a higher dose].”

Future Research to Focus on Tailoring Medication to Individual Patient Needs

In the future, research will focus on customizing the dose to individual patients, says Dr Douglas. “We might find out that some people need more, and some need less of the medication [to manage TED] but for now, the OPTIC study seems have found a sweet spot for many patients.”

Unlike many other biologic drugs that target the immune system, teprotumumab works by a different pathway, Dr. Douglas explains. This monoclonal antibody binds to the insulin-like growth factor (IGF-1). Because of this, patients will be less at risk for developing infections and becoming ill due to a suppressed immune system, which has been a concern with the existing class of drugs.4

Teprotumumab has a good safety profile and has been well-tolerated throughout the different phases of testing, says Dr. Douglas. Adverse effects were minimal. Not without any risks, physicians will need to monitor blood sugar levels, liver function, and cardiac function in patients receiving this medication.

While thyroid eye disease isn’t life-threatening, Dr. Douglas recounts that many people who are taking this new biologic have ran up to him to give him a hug to express their gratitude.

“The quality of life of someone with thyroid eye disease can suffer greatly when this disease is present. People often withdraw from almost all of their social activity, simply avoiding any reason to leave the house,” says Dr. Douglas, “For these patients, this drug is a game changer.”

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