Whether Managing Associated Side Effects Or Referring And Comanaging You Are Integral To These Patients Care Teams
Thyroid-associated ophthalmopathy , also known as thyroid eye disease or Graves ophthalmopathy, is the most common autoimmune inflammatory disorder of the orbit and periorbital tissue, with approximately three million Americans affected.1,2 This prevalence is similar to that of glaucoma in the United States. Historically, TAO was limited to patients with Graves disease and the clinical triad of orbital signs, hyperthyroidism and pretibial myxedema.3 Now, research shows only 80% of patients with TAO have Graves the other 20% consists of patients who are hypothyroid and euthyroid .4 Because TAO can precede, coincide with or succeed the diagnosis of thyroid dysfunction, optometrists need to be capable of making an early diagnosis, as TAO can be vision-threatening, impact a patients appearance and result in loss of quality of life.5,6
|Fig. 1. Hypotropia of the right eye in a patient with TAO.|
Thyroid Eye Disease Phases
Thyroid Eye Disease is a serious, potentially vision-threatening condition that can get worse over time, but can be managed with treatment.
When you have TED, your immune system mistakenly attacks the muscle and fat tissue behind your eyes, causing inflammation and scar tissue to form.
TED has 2 phases. The first is called the acute phase, which you may hear your doctor describe as the active phase of TED. The second is called the chronic phase, which you may hear your doctor call the inactive phase of TED.
Should I Exercise If I Have A Thyroid Disease
Regular exercise is an important part of a healthy lifestyle. You do not need to change your exercise routine if you have a thyroid disease. Exercise does not drain your bodys thyroid hormones and it shouldnt hurt you to exercise. It is important to talk to your healthcare provider before you start a new exercise routine to make sure that its a good fit for you.
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Symptoms Of Thyroid Eye Disease
Early symptoms of thyroid eye disease may include:
- Itching, dry eyes, and difficulty wearing contact lenses
- Excessively watery eyes
- Red or bloodshot eyes
- Swelling of the orbital tissues which causes the eye to be pushed forward referred to as exophthalmos, which can make people with thyroid eye disease appear to have a wide-eyed or bulging, protuberant stare.
- Pain when moving the eyes up, down, or sideways
- Light sensitivity
Thyroid eye disease can cause inflammation and swelling that may affect the eyes as well as the muscles and other tissues around the eyes. As the disease progresses, symptoms can include the following:
- Increased sensitivity to light
- Impaired vision
- Difficulty moving or closing the eyes
Thyroid eye disease is known to go through varying degrees of severity and can go into periods of remission. It often lasts six months to two years. When it has been inactive for a period of around a half a year, it’s less likely to recur.
What Are The Symptoms Of Thyroid Eye Disease
If you have Graves disease, eye symptoms most often begin within six months of disease diagnosis. Very rarely, eye problems may develop long after the Graves disease has been treated. In some patients with eye symptoms, hyperthyroidism never develops and, rarely, patients may have hypothyroidism. The severity of the eye symptoms is not related to the severity of the hyperthyroidism.
Symptoms of thyroid eye disease are caused by the tissues, fat, and muscles of the eye socket swelling and pushing the eyeball forward. It may be possible that symptoms may appear in one eye more than the other. The symptoms of thyroid eye disease include:
Dry, gritty and irritated eyes
Bulging eyes and lid retraction giving a staring or startled appearance
In more advanced thyroid eye disease, there may also be:
- Trouble moving eyes and closing eyes
- Inability to completely close your eye causing a corneal ulcer
- Colors appear to be dull or not as bright
- Blurred or loss of vision due to optic nerve compression or corneal damage
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Who Is At Risk For Thyroid Eye Disease
Thyroid eye disease is most commonly associated with Graves disease. It can also occur with normal thyroid hormone levels or low levels of thyroid hormones .
Other risk factors for thyroid eye disease include:
- Age: Usually affects middle-age adults but can occur at any age
- Gender: Females are affected more than males
- Family history of thyroid eye disease
- Smoking: Smoking increases the risk of thyroid eye disease by 78 times, causes thyroid eye disease to have a longer active phase, and it reduces the effectiveness of treatments
- Radioactive iodine therapy: Radioactive iodine has been used to treat hyperthyroidism and Graves disease. This treatment should be used with caution in people with active thyroid eye disease as it may worsen the condition unless steroids are given at the same time
- Low blood levels of selenium, a dietary mineral.
How Does Thyroid Eye Disease Affect Mental Health
TED can cause eye pain, double vision, loss of vision, and changes to your appearance which may impact your quality of life. The impacts of TED can lead you to experience to depression, anxiety, loss of independence, and reduced self-confidence. You may have a decreased desire to socialize with others, have trouble with productivity at school or work, and stop doing activities you once enjoyed.
To help support your mental health as you deal with TED:
- Talk to your doctor: Talk to your doctor about any changes to your emotional well-being. Ask questions on how TED will affect your daily life and work.
- Seek support: Seek out support groups of others who are going through TED. The Graves Disease and Thyroid Foundation offers support groups for people with Graves disease, thyroid eye disease, and other thyroid conditions. These groups can help you learn about your condition, share your experience, and find support.
- Connect with others: Stay connected friends and family to keep you from feeling isolated.
- Take time to enjoy life: Take part in activities or hobbies that make you happy.
- Exercise: Exercise can help symptoms of depression or anxiety and make you feel better. Talk to your health care professional to determine what exercise routine may work best for you, especially if you have changes to your vision due to TED.
To learn more, check out the following resources:
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Testing Thyroid Peroxidase Antibodies Level
Since Graves disease is an autoimmune disorder , this blood test may be recommended. TPO measures the level of thyroid peroxidase antibodies. If you have those antibodies in your blood, it suggests that the immune system has attacked the thyroid. However, about 5-10% of healthy people test positive for TPO antibodies, so the presence of these antibodies doesnt always indicate that you have an autoimmune disorder.
What Causes Graves Eye Disease
Sometimes Graves disease makes the immune system attack the muscles and other tissues around the eyes. This causes swelling behind the eye sockets, which makes the eyes bulge out.
Researchers arent sure what causes Graves disease. They think people with certain genes may be more likely to get it. Viruses or something else in the environment may act as a trigger that makes the disease develop in people who have these genes.
Graves disease isnt contagious you cant get it from or give it to other people.
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Is There Anything I Can Do
Yes. Here are a few tips:
- We know that one thing that makes this disease worse is smoking. If you smoke, see your GP about getting help to stop. Stopping smoking, even if you already have thyroid eye disease, will reduce the severity.
- Sleeping propped up will help reduce the puffiness around the eyes.
- You may find bright light uncomfortable. Sunglasses will help.
- If you are a driver and experience double vision, let the DVLA know. This is a legal requirement. Usually, they will contact your specialist eye doctor for a report. If the double vision is well controlled with prisms, you may be declared fit to drive. Until then you should not drive.
The Thyroid Gland And Important Terms
Thyroid Gland: The thyroid gland is located in the front of your neck. It produces thyroid hormones that are sent to the blood and carried around to other parts of your body. These hormones help your body use energy, stay warm and keep the brain, heart, muscles, and other organs working normally. The thyroid gland can become overactive or underactive . This is most often due to an autoimmune disease in your body.
Hyperthyroidism: Hyperthyroidism is a condition where the thyroid gland is stimulated by the immune system to produce more thyroid hormones than are needed by the body. Symptoms may include weight loss, nervousness, irritability, increased perspiration, fast heart rate, hand tremors, difficulty sleeping, thinning of the skin, brittle hair, and frequent bowel movements.
Hypothyroidism: Hypothyroidism is a condition where thyroid gland function is blocked by the immune system and not enough thyroid hormone is produced for the bodys needs. Symptoms may include feeling cold and tired, having drier skin, becoming forgetful and depressed, and having constipation.
Autoimmune disease: If you have an autoimmune disease, your immune system mistakenly attacks your body. Autoimmune diseases can affect many parts of the body. The cause of autoimmune diseases is largely unknown.
The Thyroid Gland
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What Is Thyroid Eye Disease And Can It Be Treated
Thyroid eye disease is an autoimmune eye condition that is often seen in people with thyroid disease and is usually abbreviated TED. It tends to run in families and is more frequent in women and in smokers. When you have TED, your immune system mistakenly attacks the muscle and fat tissue behind your eyes, causing inflammation, redness, and swelling as well as causing scar tissue to form.
More severe effects from TED are rare, but can occur, including vision loss from damage to the optic nerve and breakdown/infection of the cornea . About 90% of TED patients also have Graves Disease. However, about 10% of TED patients have a normal or under-functioning thyroid.
TED can be seen in conjunction with Graves Disease, Graves ophthalmopathy or orbitopathy , or Thyroid-associated orbitopathy . About 30% of people with Graves Disease have a mild form of thyroid eye disease while 5% develop a severe form. The condition is also seen in people with no evidence of thyroid dysfunction or in people diagnosed with Hashimotos disease, a hypothyroid autoimmune condition marked by an underproduction of thyroid hormones.
Graves ophthalmopathy or orbitopathy is a thyroid eye disease that can affect both a persons vision and their physical characteristics.
Thyroid Eye Disease May Slow Down Over Time But That Doesnt Mean It Goes Away
The acute phase is followed by the chronic phase of TED. You may have heard your doctor refer to this phase as the inactive phase of TED. However, that doesnt mean your condition has gone away. You may still have symptoms during the chronic phase.
Only a TED Eye Specialist can determine which phase of TED you are in, but there are a few signs to watch for that may signal you are entering the chronic phase:
- Inflammation has stopped or slowed
- Redness has decreased or gone away
- Eye bulging hasnt gotten worse
Inflammation that began during the acute phase can cause scar tissue to build up over time. This can cause damage to the eyes, leaving you with ongoing symptoms like eye bulging, eye pain, eye pressure, double vision and misaligned eyes, if not treated.
If left untreated, certain triggers such as smoking or stress may cause TED to flare. Learn more about triggers using the Triggers and Flares Tool.
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What Triggers Thyroid Eye Disease
Thyroid eye disease is most likely to occur within 6 months of a diagnosis of Graves disease. However, TED can occur in Graves patients with normal or even low thyroid levels.
While it commonly occurs with Graves disease, TED can occur with Hashimotos thyroiditis, a hypothyroid condition. TED isnt directly linked to high thyroid levels.
Sometimes, TED is the first sign of any thyroid problem. However, higher thyroid levels wont cause a more severe case of thyroid eye disease.
Autoimmune diseases remain a mystery. Its not clear what causes the body to attack healthy cells.
Smoking or spending a lot of time with someone who smokes can increase the risk for TED. If you already have TED, smoking can make symptoms worse.
Find A Specialist In Thyroid Eye Disease Near You
Thyroid Eye Disease is a unique and rare condition. Make sure youre seeing a doctor who has experience treating it, a TED Eye Specialist. When you first call your local TED Eye Specialist, please note the office staff may not know if TED is treated with TEPEZZA in that practice.
Please enter a valid ZIP Code.
Results are sorted by the doctors closest to the center of your ZIP code area. Use the checkboxes next to each doctors name to select one or more specialists to download and print or email their contact information.
If somebody came to me saying, I think I might have Thyroid Eye Disease, I would tell them to talk to their doctor and ask them about TEPEZZA. It helped me so much and it might be right for you.
Jeanne T., real TEPEZZA patient
Visiting your doctor during the COVID-19 pandemic
Protecting your overall health is an important part of your TED treatment journey. Here are some tips for getting the care you need while following appropriate safety steps.
Before your visit
During and after your visit
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How Is Thyroid Eye Disease Treated / Managed
Thyroid eye disease in its active phase can last between one and three years. That means if it is left untreated, the inflammation may gradually decrease by itself but may cause damage to vision through the course of the disease. Sometimes, the changes caused by the enlargement of the tissues may not go away. The goal of treatment is to limit inflammation and swelling occurring during the active or inflammatory phase and to protect the front of the eye and prevent vision loss.
Thyroid eye disease is managed by a specialist eye doctor . Any underlying thyroid problems will be managed by your primary care doctor or by a specialist in the hormone systems of the body .
If a thyroid issue is suspected, evaluation and treatment are critical. The first priority is to restore your normal thyroid function. In addition, eye conditions should be examined and treated at the same time as your thyroid gland treatment. Eye problems may continue to progress even after your thyroid function returns to normal.
If you have thyroid eye disease, your eye doctor may recommend one or more of the following treatments to help soothe your eyes and improve your vision:
Cool compresses: Apply cool compresses to your eyes. The extra moisture and cooling effect may provide relief.
Sunglasses: When you have thyroid eye disease, your eyes are more sensitive to sunlight and UV rays. Wearing sunglasses helps protect them from both sun and wind.
Commonly Used Terms For Thyroid Eye Disease
TED is a rare and unique condition, but is often considered part of a separate condition called Graves disease. Its important to remember that they are different diseases and require different medicines. Although they are separate from one another, TED is often called by different names containing the word Graves or thyroid, like:
- Graves eye disease
If you hear any of these terms, know that they mean Thyroid Eye Disease .
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If Part Of My Thyroid Is Surgically Removed Will The Other Part Be Able To Make Enough Thyroid Hormones To Keep Me Off Of Medication
Sometimes, your surgeon may be able to remove part of your thyroid and leave the other part so that it can continue to create and release thyroid hormones. This is most likely in situations where you have a nodule thats causing your thyroid problem. About 75% of people who have only one side of the thyroid removed are able to make enough thyroid hormone after surgery without hormone replacement therapy.
Table 3 Management Of Thyroid Eye Disease
Disease Stage Refractory
- Steroid-sparing immunomodulators
When using CAS, note that severe disease complications, such as dysthyroid optic neuropathy, are still possible with low CAS scores, and patients with high CAS scores may have long-standing congestive changes that are unresponsive to any immunotherapy, requiring mechanical surgical decompression.
Latent. After the active phase plateaus, the patient enters the quiescent burn-out phase. This latent, chronic fibrotic phase presents with similar clinical findings as the active inflammatory phase but does not have many of the inflammatory signs seen during the active phase .23 These patients require frequent follow-up, as reactivation of inflammation can occur in 5% to 10% of patients over their lifetime.24
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Who Gets Thyroid Eye Disease
People with Graves’ disease are at higher risk for developing thyroid eye disease. By some estimates, up to 50% of people with Graves’ disease also have symptoms associated with thyroid eye disease.
The condition, however, is sometimes seen in people with no other evidence of thyroid dysfunction, and occasionally in patients who have Hashimoto’s disease. Most thyroid patients, however, will not develop thyroid eye disease, and if so, only mildly. Smoking is associated with a worsening of symptoms.
You May Notice The Following Appearance And Vision Changes:
- Misaligned eyes or eyes that dont work together
- Sensitivity to light
- Eye pain and pressure
The changes caused by TED may also affect your emotions, making you feel anxious or depressed.
Learn more about the symptoms and signs of TED as well as the impact it can have on your emotional well-being.
While the length of the acute phase of TED is different for everyone, it usually lasts between 6 months to 2 years. During this time, symptoms can change or continue to get worse. Ideally, treatment should be given during the acute phase.
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