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Symptoms of Thyroid Eye Disease

Are your red, itchy, watery eyes just allergies, or could it be something more? If you have Graves’ disease or Hashimoto’s thyroiditis, your eye discomfort may actually be Thyroid Eye Disease (TED).

What is Thyroid Eye Disease?

TED is an autoimmune disorder that affects the connective tissue cells surrounding the eyes, often occurring alongside hyperthyroidism. In 80% of cases, hyperthyroidism and TED are diagnosed within two years of each other. (1) However, eye symptoms can sometimes appear years after thyroid treatment and can also affect individuals with Hashimoto’s thyroiditis or even those with normal thyroid levels.

Common Symptoms of TED

Every case of Thyroid Eye Disease is unique, but common symptoms include:

• Changes in color perception (urgent—seek medical attention to prevent vision loss)
• Bulging eyes (proptosis)
• Double vision
• Swelling (often in the upper eyelids, under the eyes, or around the eyebrows)
• “Flare” (the upper curve of the eye appears shifted toward the ear)
• Dry, gritty eyes
• Excessive tearing
• Pain, discomfort, or aching
• Light sensitivity
• Redness and inflammation
• Difficulty moving the eyes

The Importance of Early Diagnosis

Early detection is key! Medical treatments for Thyroid Eye Disease are more effective in the active phase of the disease. Unfortunately, many patients are initially misdiagnosed with allergies or blepharitis (eyelid inflammation). If you are experiencing possible TED symptoms, ask your doctor for a referral to a thyroid eye specialist, such as an ophthalmologist or neuro-ophthalmologist. You can also search for specialists through the Oculofacial Society (formerly called ASOPRS) or the North American Neuro-Ophthalmology Society (NANOS).

Will My TED Symptoms Get Worse?

A common question patients ask is whether mild TED symptoms will progress to a more severe stage. During a recent Graves’ Awareness Webinar co-hosted by the GDATF and the American Association of Endocrine Surgeons, Dr. Michal Kazim from Columbia University provided reassurance: most patients will improve over time or even recover completely.

However, certain patients have a higher risk of severe TED progression, including:

• Older adults
• Men
• Smokers
• Patients with high TSI (Thyroid-Stimulating Immunoglobulin) levels
• Individuals with diabetes or obstructive sleep apnea

Dr. Kazim also noted that how quickly symptoms worsen is a critical factor that helps predict further progression. Patients whose symptoms worsen rapidly over the first month are more likely to develop severe TED than those with mild symptoms over over a six-month period.

How TED Impacts Daily Life

Living with Thyroid Eye Disease is more than just managing physical symptoms—it can impact quality of life. A GDATF-commissioned survey revealed that TED can make it difficult to:

• Maintain employment
• Enjoy hobbies
• Participate in social activities

In the past, this toll was often underestimated, but times are changing. In fact, a 2022 consensus statement from the American Thyroid Association and the European Thyroid Association stressed the importance of assessing the psychosocial impact as well as the physical impact of TED and if needed, including a clinical psychologist/counselor on the care team “with expertise in coping skills related to the impairment of QOL [quality of life] related to TED”. (1)

Take Action: Get the Right Diagnosis

Before reaching for over-the-counter allergy eye drops, consult your doctor to determine if your symptoms could be Thyroid Eye Disease. If you need additional support, the Graves’ Disease & Thyroid Foundation (GDATF) is here to help—contact us today!

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Source: (1) Management of Thyroid Eye Disease: A Consensus Statement by the American Thyroid Association and the European Thyroid Association. Task Force Members: Henry B. Burch, Petros Perros, Tomasz Bednarczuk, David S. Cooper, Peter J. Dolman, Angela M. Leung, Ilse Mombaerts, Mario Salvi, and Marius N. Stan. Thyroid® 2022 32:12, 1439-1470.