TED is a serious autoimmune disease with heterogenous presentation among patients.1 Early TED signs and symptoms may present like dry eye disease, allergies, or conjunctivitis.2-4 Use the tool below to explore TED signs and symptoms, see the impact TED can have on daily activities, and view questions to help initiate conversation with your patients.
Proptosis is caused by the expansion of the orbital fat and muscles behind the eyes. The lacrimal glands are frequently involved and enlarged resulting in bulging of the eye.5 It is the second most common symptom of TED.6
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Diplopia is caused by swelling and inflammation of the extraocular muscles and typically restricts eye movement, causing double vision. The most frequently involved muscle is the inferior rectus.10
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Eyelid retraction is the most common symptom of TED presenting in up to 80%-90% of patients.5,10 Retraction develops from levator and Muller muscle inflammation and fibrosis or from levator muscle overaction caused by inferior rectus restriction.5,6
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Dry eye and grittiness are frequently overlooked signs of TED and are often misdiagnosed as dry eye disease, allergies, or conjunctivitis.2,11,12
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Pressure and/or pain behind the eyes may occur when TED causes an increase in the orbital soft tissue volume that leads to higher pressure within the unexpandable bone cavity.5
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Erythema and edema of the eyelids are other notable signs of TED.5,10 Eyelid erythema, also known as periocular dermatitis or periorbital dermatitis, presents with a scaly, erythematous eruption of the upper and lower eyelids, resulting in edema with pruritus and paresthesia.5,13
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The feeling of something stuck in the eye even though nothing is present is a phenomenon known as "foreign body sensation."14
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Inflammation of the caruncle or plica involves swelling of the small, pink, globular nodule at the medial canthus.5
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Photophobia, or light sensitivity, often occurs in TED patients when the upper eyelid retracts, resulting in corneal exposure.6
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Chemosis may present in TED patients when the conjunctiva swells, leading to erythema and periorbital edema. Fluid can build up under the membrane, giving the appearance of a large, red blister in the eye.5,15
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Spontaneous orbital pain can be caused by various conditions and is usually described as a deep, dull ache behind or within the eye.5,16
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Color vision loss* is also known as acquired color vision deficiency. Losing color vision can mean that the optic nerve is being damaged and there is a risk of vision loss. Colors may not appear as bright as they once were, or there’s a difference in the brightness of colors when comparing one eye with the other. In rare cases, some patients may become color blind.4,14,17,18
*Affects a small subset of TED patients.
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Vision loss* may occur in some TED patients. Partial or complete vision loss may occur due to swelling behind the eye that pushes down on the optic nerve. If this happens, emergency surgery may be needed to save the patient's vision. Optic nerve damage in TED patients can lead to blindness, but it is very rare.4,19,20
*Affects a small subset of TED patients.
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MY PATIENT'S POTENTIAL TED SIGNS AND SYMPTOMS (13)
Proptosis is caused by the expansion of the orbital fat and muscles behind the eyes. The lacrimal glands are frequently involved and enlarged resulting in bulging of the eye.5 It is the second most common symptom of TED.6
Diplopia is caused by swelling and inflammation of the extraocular muscles and typically restricts eye movement, causing double vision. The most frequently involved muscle is the inferior rectus.10
Eyelid retraction is the most common symptom of TED presenting in up to 80%-90% of patients.5,10 Retraction develops from levator and Muller muscle inflammation and fibrosis or from levator muscle overaction caused by inferior rectus restriction.5,6
Dry eye and grittiness are frequently overlooked signs of TED and are often misdiagnosed as dry eye disease, allergies, or conjunctivitis.2,11,12
Pressure and/or pain behind the eyes may occur when TED causes an increase in the orbital soft tissue volume that leads to higher pressure within the unexpandable bone cavity.5
Erythema and edema of the eyelids are other notable signs of TED.5,10 Eyelid erythema, also known as periocular dermatitis or periorbital dermatitis, presents with a scaly, erythematous eruption of the upper and lower eyelids, resulting in edema with pruritus and paresthesia.5,13
The feeling of something stuck in the eye even though nothing is present is a phenomenon known as foreign body sensation.14
Inflammation of the caruncle or plica involves swelling of the small, pink, globular nodule at the medial canthus.5
Photophobia, or light sensitivity, often occurs in TED patients when the upper eyelid retracts, resulting in corneal exposure.6
Chemosis may present in TED patients when the conjunctiva swells, leading to erythema and periorbital edema. Fluid can build up under the membrane, giving the appearance of a large, red blister in the eye.5,15
Spontaneous orbital pain can be caused by various conditions and is usually described as a deep, dull ache behind or within the eye.5,16
Color vision loss* is also known as acquired color vision deficiency. Losing color vision can mean that the optic nerve is being damaged and there is a risk of vision loss. Colors may not appear as bright as they once were, or there is a difference in the brightness of colors when comparing one eye with the other. In rare cases, some patients may become color blind.4,14,17,18
*Affects a small subset of TED patients.
Vision loss* may occur in some TED patients. Partial or complete vision loss may occur due to swelling behind the eye that pushes down on the optic nerve. If this happens, emergency surgery may be needed to save the patient's vision. Optic nerve damage in TED patients can lead to blindness, but it is very rare.4,19,20
*Affects a small subset of TED patients.
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Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Proptosis is caused by the expansion of the orbital fat and muscles behind the eyes. The lacrimal glands are frequently involved and enlarged resulting in bulging of the eye.5 It is the second most common symptom of TED.6
Changes in appearance due to TED may lead to self-consciousness, poor self-esteem, and social withdrawal, impacting employment and relationships.3,7-9
Have changes to your appearance due to these symptoms changed your social behavior, such as face-to-face interactions or having your picture taken?
How have TED symptoms that affect your appearance caused new or increased feelings of isolation, depression, or anxiety?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Erythema and edema of the eyelids are other notable signs of TED.5,10 Eyelid erythema, also known as periocular dermatitis or periorbital dermatitis, presents with a scaly, erythematous eruption of the upper and lower eyelids, resulting in edema with pruritus and paresthesia.5,13
Eyelid retraction combined with proptosis can lead to reflex tearing.6
Changes in appearance due to TED may lead to self-consciousness, poor self-esteem, and social withdrawal, impacting employment and relationships.3,7-9
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
How has the redness and swelling around your eyes changed how you feel about yourself?
How have your TED symptoms affected your ability to perform daily activities?
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Inflammation of the caruncle or plica involves swelling of the small, pink, globular nodule at the medial canthus.5
Changes in appearance due to TED may lead to self-consciousness, poor self-esteem, and social withdrawal, impacting employment and relationships.3,7-9
How has this swelling affected your willingness to participate in face-to-face interactions or have your picture taken?
Have you noticed other changes in your daily routines?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Chemosis may present in TED patients when the conjunctiva swells, leading to erythema and periorbital edema. Fluid can build up under the membrane, giving the appearance of a large, red blister in the eye.5,15
Changes in appearance due to TED may lead to self-consciousness, poor self-esteem, and social withdrawal, impacting employment and relationships.3,7-9
Has the swelling of your eyes caused feelings of self-consciousness or other negative feelings?
Have you noticed increased feelings of isolation, such as avoiding social gatherings?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Spontaneous orbital pain can be caused by various conditions and is usually described as a deep, dull ache behind or within the eye.5,16
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
How often do you feel eye pain? How has this affected your ability to perform daily activities at home and at work?
What other activities do you find difficult due to the pain?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Pressure and/or pain behind the eyes may occur when TED causes an increase in the orbital soft tissue volume that leads to higher pressure within the unexpandable bone cavity.5
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
How does the pain or pressure around or behind your eyes affect your day-to-day activities such as driving, reading, or walking outdoors?
Has the pain or pressure in your eyes made participating in hobbies or other activities challenging?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Vision loss* may occur in some TED patients. Partial or complete vision loss may occur due to swelling behind the eye that pushes down on the optic nerve. If this happens, emergency surgery may be needed to save the patient’s vision. Optic nerve damage in TED patients can lead to blindness, but it is very rare.4,19,20
*Affects a small subset of TED patients.
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
Has vision loss caused new or increased feelings of isolation, depression, or anxiety?
How has TED impacted your daily life?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Diplopia is caused by swelling and inflammation of the extraocular muscles and typically restricts eye movement, causing double vision. The most frequently involved muscle is the inferior rectus.10
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
Have changes to your vision affected your ability to perform daily activities, like driving, reading, using a phone or computer, or moving around the house?
How has double vision affected your ability to do your job or care for a loved one?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Color vision loss* is also known as acquired color vision deficiency. Losing color vision can mean that the optic nerve is being damaged and there is a risk of vision loss. Colors may not appear as bright as they once were, or there’s a difference in the brightness of colors when comparing one eye with the other. In rare cases, some patients may become color blind.4,14,17,18
*Affects a small subset of TED patients.
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
How has your color vision loss impacted your ability to perform daily activities, such as reading, driving, and watching TV?
How has color vision loss affected your independence and ability to get around?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Dry eye and grittiness are frequently overlooked signs of TED and are often misdiagnosed as dry eye disease, allergies, or conjunctivitis.2,11,12
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
What kind of activities, hobbies, or sports are more challenging to participate in due to dry eye and grittiness?
What other ways are your day-to-day activities affected by these symptoms?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
The feeling of something stuck in the eye even though nothing is present is a phenomenon known as “foreign body sensation.”14
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
How has the feeling of something stuck in your eye impacted your ability to participate in activities, such as watching TV and reading?
Do you find it difficult to keep your eye(s) open because of this irritating feeling?
Add to my patient’s potential TED signs and symptoms
Click the toggle to add or remove signs and symptoms from your patient's personalized sheet.
Photophobia, or light sensitivity, often occurs in TED patients when the upper eyelid retracts, resulting in corneal exposure.6
Vision changes and irritable eye symptoms due to TED may hinder performing daily activities, such as driving, reading, walking, watching TV, or participating in hobbies and sports. This can restrict independence and mobility, and impact employment and relationships.3,7,9
Has sensitivity to light impacted your ability to be productive at home and at work?
Do you feel it stops you from leaving your home or spending time outdoors?
Signs and symptoms of TED are caused by the stimulation of orbital fibroblasts, which causes inflammation behind the eye.10 The swelling of muscle and expansion of orbital fat can cause ocular tenderness, pain, and pressure.5 As TED progresses, the increased intraorbital volume puts pressure on the eye and optic nerve as more pronounced signs, such as proptosis, vision changes, and signs of corneal exposure, begin to appear.5
See the changes occurring behind the eye before visual signs appear
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