Graves’ & TED

Related. Connected. But Not the Same. Understanding the relationship between Graves’ Disease and Thyroid Eye Disease can help you recognize symptoms earlier, ask informed questions, and partner with your healthcare team throughout your journey.

Many people living with Graves’ Disease also develop Thyroid Eye Disease (TED), yet the relationship between these two autoimmune conditions is often misunderstood. Although they are connected, Graves’ Disease and TED are separate conditions that can follow different paths, affect different parts of the body, and require different approaches to care.

Understanding how Graves’ Disease and TED are related can help you make informed healthcare decisions, recognize symptoms earlier, and work with your healthcare team to develop a treatment plan that is right for you. Whether you are newly diagnosed, living with one condition or both, or supporting someone you love, this page is designed to help you navigate the journey with greater confidence, knowledge, and hope.

Every person’s journey is unique. Some people with Graves’ Disease never develop TED, while others may experience eye symptoms before, during, or after their Graves’ Disease diagnosis.

graves' disease and thyroid eye disease - how are they different

Graves’ Disease & TED Glossary: A Patient’s Guide

Learning about Graves’ Disease and Thyroid Eye Disease (TED) often means becoming familiar with new medical terms, abbreviations, and treatment options. Our glossary provides clear, patient-friendly definitions to help you better understand the language used by healthcare professionals, researchers, and the Graves’ community. Whether you’re newly diagnosed or simply looking for a quick reference, we hope this resource helps you feel more informed and confident throughout your healthcare journey.

A

Active TED

The phase of Thyroid Eye Disease (TED) during which inflammation is active and symptoms may be developing or changing. During this phase, treatment often focuses on reducing inflammation, preserving vision, and slowing disease progression.

Autoimmune Disease

A condition in which the immune system mistakenly attacks healthy tissues in the body instead of protecting them from infection.

B

Biologic Therapy

A medication designed to target specific parts of the immune system. Biologic therapies have changed the treatment landscape for TED, and new biologics are being studied for Graves’ Disease.

Bone Density

A measure of bone strength. Untreated hyperthyroidism caused by Graves’ Disease can accelerate bone loss over time.

C

CAS (Clinical Activity Score)

A tool used by eye specialists to measure the level of inflammation and disease activity in Thyroid Eye Disease.

Clinical Trial

A carefully designed research study that evaluates new medications, treatments, or medical approaches to determine whether they are safe and effective.

Chronic TED (Inactive TED)

The later phase of Thyroid Eye Disease when inflammation has largely subsided and the disease becomes more stable. Although the autoimmune activity is generally no longer progressing, some people continue to experience lasting changes such as double vision, eyelid changes, eye bulging, dry eyes, or vision-related difficulties.

D

Diplopia

The medical term for double vision.

E

Endocrinologist

A physician who specializes in hormone-related conditions, including Graves’ Disease and thyroid disorders.

Exophthalmos (Proptosis)

Forward bulging of one or both eyes caused by swelling of the tissues behind the eye.

Eyelid Retraction

A condition in which the upper or lower eyelid is pulled back farther than normal, making the eyes appear more open and sometimes preventing the eyelids from closing completely.

F

Free T3

One of the active thyroid hormones measured with blood tests to evaluate thyroid function.

Free T4

Another thyroid hormone commonly measured to assess thyroid function.

G

Goiter

An enlargement of the thyroid gland.

Graves’ Disease

An autoimmune disease in which antibodies stimulate the thyroid gland, causing it to produce too much thyroid hormone (hyperthyroidism).

H

Hyperthyroidism

A condition in which the thyroid produces too much thyroid hormone.

Hypothyroidism

A condition in which the thyroid does not produce enough thyroid hormone. This may occur naturally or after treatment for Graves’ Disease.

I

Immune System

The body’s defense system that protects against infection. In autoimmune diseases, it mistakenly attacks healthy tissues.

L

Lagophthalmos

The inability to completely close the eyelids. This may lead to dryness, irritation, or damage to the surface of the eye.

M

Methimazole

The most commonly prescribed antithyroid medication used to treat Graves’ Disease.

O

Ophthalmologist

A medical doctor specializing in diseases of the eyes, including Thyroid Eye Disease.

Orbital Decompression Surgery

A surgical procedure that creates more space around the eye by removing portions of bone or fat within the eye socket. It may improve eye comfort, vision, and eye prominence for selected patients with TED.

P

Proptosis

Another term for eye bulging or forward displacement of the eye.

R

Radioactive Iodine (RAI)

A treatment that destroys thyroid tissue to reduce thyroid hormone production. For some people, RAI may increase the risk of developing or worsening Thyroid Eye Disease. Treatment decisions should always be discussed with your healthcare team.

Remission

A period during which Graves’ Disease becomes inactive or symptoms improve significantly.

T

TED (Thyroid Eye Disease)

A separate autoimmune condition that affects the muscles, fat, and connective tissues around the eyes. Although closely associated with Graves’ Disease, TED is a distinct disease that may require different treatment.

Thyroid

A butterfly-shaped gland located at the front of the neck that produces hormones that regulate metabolism, energy, temperature, and many other body functions.

Thyroidectomy

Surgical removal of all or part of the thyroid gland.

TRAb (TSH Receptor Antibodies)

Autoantibodies commonly associated with Graves’ Disease.

TSH (Thyroid-Stimulating Hormone)

A hormone produced by the pituitary gland that helps regulate thyroid function.

TSI (Thyroid-Stimulating Immunoglobulin)

An antibody commonly found in Graves’ Disease that stimulates the thyroid gland to produce excess thyroid hormone.

U

Ultrasound

An imaging test that uses sound waves to evaluate the thyroid gland.

V

Vision Changes

Symptoms such as blurred vision, double vision, reduced vision, or changes in color vision that may occur with TED.

W

Wellbeing

Your overall physical, emotional, and social health. Living well with Graves’ Disease often involves caring for the whole person—not just managing thyroid hormone levels.

Whole-Person Care

An approach to healthcare that considers the physical, emotional, mental, and social aspects of living with Graves’ Disease and Thyroid Eye Disease. Whole-person care recognizes that supporting overall wellbeing is an important part of treatment and recovery.

timeline for graves' disease and thyroid eye disease

Could It Be Thyroid Eye Disease (TED)?

Common Signs & Symptoms

Thyroid Eye Disease (TED) affects each person differently. Some people experience only mild symptoms, while others develop more significant changes over time. Symptoms may affect one eye or both eyes and can change throughout the course of the disease.

If you notice any of the following symptoms, talk with your healthcare provider or ask for a referral to an ophthalmologist or neuro-ophthalmologist familiar with TED.

Eye Comfort

✓ Dry, gritty, or irritated eyes

✓ Excessive tearing or watery eyes

✓ Burning or stinging

✓ Redness

✓ Eye pain or pressure

✓ Feeling like something is in your eye

Vision Changes

✓ Blurred vision

✓ Double vision (diplopia)

✓ Difficulty focusing

✓ Changes in color vision

✓ Reduced peripheral vision

✓ Vision that seems to fluctuate

Light Sensitivity

✓ Increased sensitivity to sunlight

✓ Difficulty driving at night

✓ Needing sunglasses more often

✓ Sensitivity to indoor lighting

Changes in Appearance

✓ Bulging or prominent eyes

✓ Puffy eyelids

✓ Eyelid retraction (eyes appear more open)

✓ Swelling around the eyes

✓ Difficulty fully closing the eyelids

✓ Changes in facial appearance

Daily Life

✓ Eye fatigue

✓ Difficulty reading

✓ Difficulty using a computer

✓ Problems with depth perception

✓ Headaches related to eye strain

✓ Trouble sleeping because eyes won’t fully close

When to Seek Immediate Medical Attention

Although uncommon, some symptoms require urgent evaluation.

Contact your eye specialist immediately if you experience:

• Sudden vision loss

• New or rapidly worsening double vision

• Severe eye pain

• Difficulty distinguishing colors

• Inability to move the eye normally

A Hopeful Closing

Not everyone with Graves’ Disease develops Thyroid Eye Disease, and not everyone with TED experiences the same symptoms. Early recognition, regular eye evaluations, and timely treatment can help protect vision and improve quality of life.

If you have concerns about changes in your eyes or vision, don’t hesitate to discuss them with your healthcare team.

man looking in mirror with thyroid eye disease - TED - loss of identity

TED & Mental Health

More Than Vision

Thyroid Eye Disease (TED) affects more than the eyes. It can influence how people see the world—and how they see themselves. Beyond physical symptoms such as double vision, eye pain, dryness, and light sensitivity, many people experience emotional challenges including anxiety, depression, disrupted sleep, and concerns about their future.

Research from the ElevaTED patient survey found that people with more severe TED symptoms were more likely to report anxiety, depression, sleep difficulties, and limitations in everyday activities, highlighting the importance of caring for both physical and emotional health.

woman looking in the mirror with dark hair and soft colors surrounding her

When Your Reflection Feels Unfamiliar

Your appearance may have changed, but your worth has not. Your diagnosis does not define who you are.

One of the most difficult aspects of TED is something that cannot be measured by a blood test or eye examination—the feeling that your appearance no longer reflects who you are.

Changes in the eyes or face can affect confidence, relationships, work, and social interactions. Many people describe grieving the loss of their former appearance or feeling disconnected from the person they once recognized in the mirror.

These feelings are common.

They are understandable.

And you do not have to face them alone.

group photo, selfie, of community and mental health

Healing Includes More Than Your Eyes

Recovery from TED is about more than improving vision or reducing inflammation. It also means rebuilding confidence, reconnecting with others, finding support, and rediscovering the parts of yourself that make you who you are.

Healing can include:

✓ Talking openly with your healthcare team

✓ Seeking support from family and friends

✓ Connecting with others who understand TED

✓ Speaking with a mental health professional when needed

✓ Giving yourself grace as you move through recovery

Understanding Current Treatment Options for TED

Seeing the Whole Person

Treatment for Thyroid Eye Disease (TED) has advanced significantly in recent years. While every person’s experience is different, today’s treatment options focus on preserving vision, reducing inflammation, improving comfort, restoring function, and helping people regain confidence in their daily lives.

The right treatment depends on many factors, including whether TED is active or inactive, the severity of symptoms, overall health, and individual goals. Your ophthalmologist or neuro-ophthalmologist can help determine which approach may be appropriate for your situation.

Artificial tears, nighttime ointments, sunglasses, moisture chambers, elevating the head during sleep, and lifestyle adjustments can help reduce dryness, irritation, and light sensitivity.

Supportive Eye Care

For mild symptoms

Artificial tears, nighttime ointments, sunglasses, moisture chambers, elevating the head during sleep, and lifestyle adjustments can help reduce dryness, irritation, and light sensitivity.

medications for thyroid eye disease

Medications

Reducing inflammation

Some people benefit from corticosteroids or other medications that help reduce inflammation during the active phase of TED. Treatment recommendations vary depending on each person’s symptoms and medical history.

biologics for thyroid eye disease

Biologic Therapies

A new era of treatment

Targeted biologic therapies have changed the treatment landscape for some people with active Thyroid Eye Disease by addressing specific immune pathways involved in the disease process. Researchers continue to study additional therapies that may expand treatment options in the future.

two women talking supportive services for TED

Rehabilitative & Supportive Care

Helping you live well

Prisms, vision therapy (for selected patients), occupational therapy, mental health support, and community resources may improve quality of life while navigating TED.

surgery for thyroid eye disease

Reconstructive Surgery

Restoring comfort and function

When TED becomes inactive, some people choose surgery to improve vision, eye comfort, eyelid position, or appearance. Surgical decisions are highly individualized and should be discussed with an experienced ophthalmic surgeon.