Diagnosing Thyroid Eye Disease
TED is rare and catching it early is important, so it should be diagnosed by a doctor who has experience treating ita TED Specialist.
are ophthalmologists who usually have advanced training, such as oculoplastic surgeons, neuro- ophthalmologists, and strabismus surgeons.
The first step in diagnosing Thyroid Eye Disease is to get a baseline eye exam by your TED Specialist. They will look for TED symptoms, such as red or watery eyes, eyelids that dont close properly, or puffy eyelids.
One of the most common symptoms of TED is eye bulging, also known as proptosis or exophthalmos. To diagnose TED, your doctor may use an exophthalmometer to measure how far your eyes are bulging.
Your TED Specialist can also tell you which you are in: acute or chronic.
Your TED Specialist will also want to know all about your medical history, like if you have a thyroid condition, if anyone in your family has had thyroid problems, and if you are a smoker.
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
Fact: If You Have Ted You Should See An Ophthalmologist Who Has Experience Treating Ted
Thyroid Eye Disease is a unique and rare eye condition, and not all doctors are used to treating it. Thats why its important that you see a doctor who has the right experiencea TED Specialist.
TED Specialists are ophthalmologists who usually have advanced training, such as oculoplastic surgeons, neuro- ophthalmologists, and strabismus surgeons.
While there are about 20,000 eye doctors in the US, most are not used to seeing TED patients. TED Specialists have advanced training in specific types of eye and vision care.
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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 Can I Find Support
Because thyroid eye disease can change your vision and appearance, it can have a big effect on your life. It’s important to get support along with your treatment. You might start by talking to family and friends about what youâre going through.
Depression is common in people with thyroid eye disease. If you feel like youâre struggling, talk to your doctor. They can put you in touch with a mental health professional who can help.
Graves’ disease support groups are another place to turn. You’ll meet other people with thyroid eye disease who may have advice to help you manage your condition. You can find a support group through an organization like the Graves’ Disease & Thyroid Foundation.
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Symptoms Of Graves Ophthalmopathy
If you have this eye condition, you may experience one or more of the listed symptoms below:
- Dry, itchy, irritated eyes
- The sensation of pain or pressure around the eyes
- Trouble closing the eyes completely
- Double vision, especially when during peripheral fields of vision
- Pain when you move your eyes either up and down or left to right
How Is Thyroid Eye Disease Treated
Your primary care doctor or a specialist called an endocrinologist will help you manage thyroid eye disease and get your hormone levels into a normal range. An eye doctor treats symptoms of thyroid eye disease. The goal of treatment is to bring down swelling and protect your eyes.
Your doctor might recommend:
Prism glasses. You get double vision when light lands in the wrong part of your retina. Prism glasses bend light as it goes through your eye so that it lands in the right place. Wearing an eye patch is another way to treat double vision.
Tepezza. Teprotumumab-trbw is the first drug approved to treat thyroid eye disease. It comes as an IV that your doctor gives you every 3 weeks. Tepezza blocks antibodies that attack tissues behind the eye and helps reduce eye bulging, double vision, and other symptoms. The most common side effects are:
- High blood sugar
Steroids. Prednisone and other steroids help bring down swelling in your eyes and treat double vision. Doctors usually prescribe these drugs for only a short time because they can have side effects like fluid buildup, high blood pressure, mood swings, and weight gain.
Radiation. This treatment, which uses beams of intense energy, reduces swelling and relieves double vision. But you can get radiation to your eyes only twice in your life, and it may have side effects like dry eyes. Radiation treatment might also slightly raise your risk for cancer.
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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
Am I At Risk For Graves Eye Disease
If you have Graves disease, youre at risk for Graves eye disease. About 1 in 3 people with Graves disease develop some of these eye problems.
Smoking increases the risk for eye problems in people with Graves disease. If you smoke, make a plan to quit. You can call 1-800-QUIT-NOW for free support or check out the resources on Smokefree.gov.
Graves disease is much more common in women and usually develops before age 40. Youre at higher risk if you have a family history of Graves disease or if you have another autoimmune disease, like rheumatoid arthritis.
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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.
Fact: Thyroid Conditions And Ted Need To Be Treated By Different Doctors You Should See An Endocrinologist For Graves Disease Or Other Thyroid Conditions And A Ted Specialist For Ted
Graves disease and Thyroid Eye Disease affect different parts of the body. Graves disease affects the thyroid and should be managed by an endocrinologist, who is an expert in treating thyroid issues.
TED is a separate disease that affects the eyes and should be managed by a doctor experienced in treating it: a TED Specialist. There are a few different types of eye doctors who can be TED Specialists.
If you have both conditions, your endocrinologist and your TED Specialist should stay in regular contact with each other. They need to work together to make the best treatment plan for you.
If you suspect you may have Thyroid Eye Disease, see a TED Specialist and ask for a baseline eye exam.
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How Is Thyroid Eye Disease Diagnosed
If you know that you have Graves’ disease, your doctor might recommend that you see an eye doctor. Theyâll check your eyes for bulging and enlarged muscles.
These are a few other tests for thyroid eye disease:
- Vision and color vision tests
- Visual field tests
- Tests of the optic nerve
You may also need one or more of these tests:
- CT. This is a powerful X-ray that takes detailed pictures of the inside of your eye.
- MRI. This uses powerful magnets and radio waves to make pictures of your eye muscles.
- Blood test. It measures levels of thyroid hormones or antibodies in your blood.
Closing In On More Effective Treatments For Thyroid Eye Disease
Needless to say, if you are among the estimated 20,000 patients experiencing active TED in any given year,³ it will come as a huge relief to learn about some effective new treatments. Since there is as yet no treatment for thyroid eye disease, it behooves you to stay alert for new treatments that are approved to manage thyroid eye disease as you may benefit from advances in treatment as time goes on.
Results of the OPTIC trial suggests that, finally, we may be closing in a the first effective therapy.
The drug, teprotumumab, for example, is a biologic drug made of human monoclonal antibodies. The effectiveness of this medication appears very good following eight doses of this medication given intravenously to patients with TED over 24 weeks.
An improvement in symptoms was experienced by more than 80% of the participants,³ says Raymond Douglas, MD, director of the orbital and thyroid eye disease program at Cedars-Sinai Medical Center in Los Angeles, California, who presented the data at the AACE 2019 meeting in San Francisco, California.
When the trial was designed, Dr. Douglas and the research team werent sure how much of the drug would be enough. We figured that the inflammation might get better, but the more problematic cases might require more treatment .
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What Causes Graves Disease And Thyroid Eye Disease
Your immune system makes proteins called antibodies to protect you against germs. With Graves’ disease, your immune system makes antibodies that mistakenly attack your thyroid gland. This kind of condition is called an autoimmune disease.
These antibodies make your thyroid grow larger and produce too much of thyroid hormone. Thatâs called hyperthyroidism. The extra thyroid hormone can cause symptoms including weight loss, a fast heartbeat, high blood pressure, and moodiness.
Abnormal antibodies can also attack and damage the fat and muscles around your eyes. Your eyes may become red, swollen, and pushed forward . This is thyroid eye disease.
Graves’ disease sometimes runs in families. Having certain genes might increase your risk.
Smoking is another big risk factor. If you have Graves’ disease and you smoke, you’re twice as likely to get thyroid eye disease as someone who doesn’t smoke.
Whats Special About University Of Michigans Treatment Of Graves Disease
UM is one of the few places in the country that has a multidisciplinary group dedicated to the treatment of patients with Graves disease. UMs multidisciplinary group consists of endocrinologists, endocrine surgeons, ophthalmologists, nuclear medicine physicians, rheumatologists and psychiatric professionals. Our group sees Graves disease patients from around the country and is involved with one of the most well-known national organizations concentrating on helping patients and families coping with Graves disease and Graves eye disease. Our group routinely publishes papers with new research results on Graves disease.
The ophthalmologists in our group specialize in the treatment of Graves eye disease which can require complex management. Most ophthalmologists have little experience treating patients with Graves disease and Graves eye disease. For those patients with Graves eye disease, it is the severity of the eye disease which drives the selection of the type of treatment for hyperthyroidism if these two problems occur together.
While those patients with no Graves eye disease or only mild eye disease may be candidates for any of the three types of treatments for hyperthyroidism, those who have moderate to severe eye disease are often referred for surgical thyroidectomy as RAI has a higher chance of worsening the eye disease than surgery does.
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Fact: You Can Develop Ted Without Having Graves Disease
While its true that many people are diagnosed with Graves before being diagnosed with Thyroid Eye Disease , its not always the case. In fact, about 1 in 10 people with TED develop it without having Graves disease.
Its also not uncommon for people to be diagnosed with TED before, during, or even after getting diagnosed with Graves disease.
People diagnosed with TED may also be diagnosed with a different type of thyroid condition called Hashimotos disease or Hashimotos hypothyroidism .
What Can I Expect With Thyroid Eye Disease
You can treat most symptoms of thyroid eye disease. But it might take 2 or 3 years to get the condition under control.
Your eye doctor will monitor you often during your treatment. In between visits, let them know if you have any bothersome symptoms.
If you smoke, quitting can make your disease less severe and help your treatment work better.
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Thyroid Eye Disease Is An Autoimmune Disorder
Thyroid Eye Disease is a condition where your immune system mistakenly attacks the muscle and fat tissue behind your eyes, causing inflammation and scar tissue to form.
The inflammation and scar tissue that forms can cause many changes to your eyes, like:
- Eye bulgingalso called proptosis or exophthalmos
- Misaligned eyes or eyes that dont work togetheralso called strabismus
- Double visionalso called diplopia
…And more. TED can have an impact on your physical appearance, visual ability, and even your emotional well-being. .
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.
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Graves Disease Vs Hashimotos Disease: Top 4 Things To Know
Graves disease and Hashimotos disease are the two most common autoimmune diseases affecting the thyroid gland. These are a result of immune system malfunction and where antibodies against ones own normal thyroid tissue. Both are also the most common causes of thyroiditis, or inflammation of the thyroid gland. Furthermore, Graves is the most common cause of hyperthyroidism in most countries, while Hashimotos disease is by far the most common cause of hypothyroidism .
Who Is At Risk Of Developing Graves Ophthalmopathy
People who have Graves disease face a high risk of developing this ocular condition. Almost all cases of Graves ophthalmopathy will have Graves disease as the underlying health problem.
Similarly, people with hyperthyroidism or those receiving radioactive iodine treatment may be at risk.
Finally, cigarette smoking increases the risk of developing a severe form of this disease. Compared to non-smokers, smokers are less likely to respond well to immunosuppressive treatments given to manage the condition.
Investigators have established an association between smoking and other autoimmune diseases, such as rheumatoid arthritis and Crohn’s disease. This observation suggests that smoking may cause a generalized stimulation of autoimmune processes.
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