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Early diagnosis Early thyroid eye disease symptoms

Early diagnosis of TED: Staying ahead of the damage

Under-diagnosis of TED may be a result of the subtlety and misleading nature of its earliest signs and symptoms. TED can first present with photophobia, erythema or redness of the eyes or eyelids, a feeling of grittiness, excessive tearing, or dry eyes.7 However, these are often confused with other conditions, such as allergies or dry eye symptoms of other origins. Eyelid retraction in a resting state and lid lag in which there is a delay of the eyelid to follow downward gaze are also early signs.7,15

The challenges of diagnosing and monitoring TED make improved co-management between endocrinologists, opthalmologists, and oculoplastic surgeons a key need in the evolving field of TED care.

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Photophobia

Photophobia, or light sensitivity, is often due to upper eyelid retraction and the resulting corneal exposure. Evidence shows up to 80% of patients develop upper eyelid retraction in early TED.16

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Dry eyes and grittiness

Dry eyes and grittiness are frequently under-recognized as signs of TED, but have been shown to impact both patient quality of life and visual function. In a long-term follow-up study in a single US county, 72% of patients with TED said dry eyes were their most frequent source of eye discomfort.17

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Redness, swelling, and excessive tearing

Erythema (redness) and edema (swelling) of the eyelids were the two most commonly reported signs in a pilot study of a tool designed to help non-eye specialists detect early TED.18 Corneal exposure due to eyelid retraction can lead to excessive reflex tearing.7

Drooping eyelid thyroid eye disease image

Upper eyelid erythema with noticeable edema
of both upper and lower eyelids 

Click to enlarge
Thyroid Eye Disease Symptoms Icon Thyroid Eye Disease Symptoms Icon

Overlooking any of these early signs and symptoms
can lead to permanent physical sequelae and
unnecessary patient suffering due to delayed diagnosis.

TED specialist Dr. Ray Douglas describes the
importance of early diagnosis and how to correctly
identify these first signs and symptoms

Read the full video transcript

I described thyroid eye disease to my fellows as an immunologic process. The real underlying molecular mechanisms are from the immune system attacking the tissue around the eyes and that includes the muscle and fat that explains much of the symptoms and signs that we see in this disease such as expansion of the adipocytes, expansion of the muscles from the fiber blast activation. So it really begins to put the disease into perspective and also how we have to treat it separately from the thyroid.

The earliest signs of thyroid eye disease are often centered around the eyelids, so when you have eyelid erythema, eyelid edema, even lid lag or eyelid retraction, and especially in the staring appearance on photographs or during conversation, especially if there's lateral upper eyelid retraction, that can be a very, very characteristic sign of early thyroid eye disease. As the disease progresses, these symptoms and signs may get worse over time. Patients will notice symptoms such as photophobia with dryness, irritation of their eyes, even changes in vision and these are all signs that could be worrisome for active thyroid eye disease. Thyroid eye disease is commonly misdiagnosed because so many of the symptoms and signs overlap with common disorders. so, some of the symptoms that can lead to misdiagnosis are the feeling of changing or blurring vision and also orbital aching and pain. Both of these can be very common in thyroid eye disease, but they overlap with other disorders and many clinicians are not accustomed to thinking of these in terms of thyroid eye disease.

Differentiation between active and inactive TED can be quite a challenge. Active TED is marked by eyelid erythema eyelid retraction and is often a progressive process. Inactive disease retraction and is often a progressive process. Inactive disease tends to have a diminution of the active disease including the eyelid erythema, eyelid retraction and eyelid edema. The process in inactive TED does not change any further. Early identification of active TED is important because it really represents a window of opportunity for treatment. We have a very limited window in active TED often from months to a couple of years, and during this window of opportunity, it probably is the ideal time to treat with medical treatments, to limit the changes that we would see in the tissue surrounding the eye and the worsening of the proptosis and Strabismus.

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