Evaluation And Diagnosis Of Thyroid Eye Disease
Thyroid eye disease is typically diagnosed based on medical history and presenting symptoms.
If a patient with some form of thyroid disease experiences eye changes such as lid retraction, bulging eyes, redness, tearing, double vision, or loss of vision, their doctor may refer them to an ophthalmologist to be evaluated for thyroid eye disease.
Blood tests may be done to check thyroid levels. Imaging tests, such as a CT scan or MRI of the orbits, can be used to evaluate the extent of inflammation.
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 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.
Remember, TED is an ongoing disease. Just because some symptoms slow down, does not mean they will go away. Its even possible for symptoms to return, or flare up, if left untreated.
Coping With Changes To Your Appearance
It is well known that TED can affect your psychological and social well-being. You may feel anger, loss of self-esteem or confidence, or socially isolated, because of the change in the appearance of your eyes. Your mood can also be affected by medications you may be taking, such as steroids. TED can change your facial appearance and alter your expression which may affect the way people react to you which, understandably, can be difficult to cope with. Treatment, which may include surgery, can often improve this and counselling, or contact with others who have TED, can help you find coping strategies.
Some of the following organisations might be helpful:
- Thyroid Eye Disease Charitable Trust can help put you in touch with other people who have had similar experiences which is often helpful.
- The British Thyroid Foundation has a network of telephone support volunteers that can help. They also have closed Facebook groups for people with TED. You can email them at if you would like their support.
- The charity Changing Faces also offers a support service for anyone experiencing a condition or injury that affects their appearance.
- Our Counselling and Wellbeing team can offer telephone counselling to anyone affected by sight loss or an eye condition.
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Thyroid Eye Disease Phases
Thyroid Eye Disease is a serious, 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.
Can You Drive With Thyroid Eye Disease
In the early stages before damage is done, a patient should have no trouble driving. However, there are some symptoms of hyperthyroidism that would prevent you from seeing properly when driving.
- Advanced symptoms may cause a physician to advise against driving while symptoms persist. The physician will review and report on the patients visual capacity regularly and oversee possible side effects of medications prescribed.
- A patient would not be able to drive with symptoms that reduce the psychophysical capacity.
- Thyroid crisis or storm would prevent a patient from driving until the problem is solved.
- After thyroidectomy surgery, the patient cannot drive for three weeks and can drive only after the surgeons assessment of the clinical recovery of the patient.
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What Is The Outlook For Thyroid Eye Disease
Thyroid eye disease is a temporary but drawn-out illness which fades away by itself. The inflamed period tends to last months to years , after which there is a healing response. For most people the condition will be mild, needing lubricants and regular assessments only. For those with more severe disease, the outlook depends on how early it is diagnosed and how intensive the treatment is. About 1 in 4 people with severe disease will end up with reduced eyesight.
Eye During Chronic Phase
- Whats happening behind the eye?
- Scar tissue that began forming during the acute phase continues to cause damage to the eyes
- Can symptoms still be present during the chronic phase?
- If left untreated, the scar tissue behind the eye can cause symptoms such as bulging eyes , double vision , eyelid retraction, eye pain, and pressure
- Some symptoms, such as redness or swelling, may improve
Remember, TED is an ongoing disease. Just because some symptoms slow down, it does not mean they will go away. Its even possible for symptoms to return, or flare up. If you have symptoms that come back at least 6 months after your TED has been in the chronic phase, it is considered a flare up. Approximately 15% of TED patients may have flares. Sometimes these flares are years after early symptoms stopped or lessened.
I always tell my patients that theres a possibility of having a flare sometime in the future. Its just the nature of a chronic, autoimmune disease. When this happens its important to talk to your doctor about any next steps.
Raymond Douglas, MD, PhD, oculoplastic surgeon, and clinical study investigator of TEPEZZA
If you have inflammatory bowel disease , such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.
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Treatment Of Thyroid Eye Disease
For a mild case, use lubricating eye drops and artificial tears a few times during the day. Avoid wind and bright light.
If you have severe symptoms, your healthcare provider may prescribe corticosteroids such as prednisone to reduce swelling. In a very small percentage of patients, orbital decompression surgery may be recommended.
This procedure removes the bone between the eye socket and the air sinus behind it so your eye has more room. This can improve your vision but there is a risk of double vision.
Double vision can also occur when scar tissue from the ophthalmopathy makes an eye muscle too short. Eye muscle surgery can be used to attach the muscle at a point where it will again be the correct length to provide single vision. However, more than one surgery may be needed to be successful.
Common Triggers Of Thyroid And Autoimmune Flare
As part of our collaboration with the University of Oxford, we asked people diagnosed with Hashimotos or an underactive thyroid to send us their top thyroid health questions.
We received a lot of inquiries about triggers of Hashimotos and thyroid flare-ups. Flare-ups are the worsening of one or more symptomscausing discomfort and problems with your daily functioning.
We dug into peer-reviewed science research to determine the top causes of flare-ups, heres what we found:
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How Long Does The Active Phase Of Thyroid Eye Disease Last
TED has an active stage that can last anywhere from several months to several years. The active stage is followed by an inactive stage. This is when the immune attack stops and the tissues behind the eyes are no longer being damaged.
You may still need some treatment in the inactive stage. Changes to the eye structure during the active stage may need surgery. Your healthcare provider will delay any required surgeries until the active stage is over.
Managing your Graves disease is an important part of taking care of yourself. However, it wont resolve or prevent TED. They are part of the same autoimmune disease but follow their own separate courses.
How Is It Linked To Graves Disease
Gravesâ disease is an immune system disorder that causes your body to attack your thyroid gland. The attack triggers your body into making extra thyroid hormone.
Gravesâ disease doesnât cause thyroid eye disease. But the two conditions do show up around the same time. The disorders may arise together because the tissue around your eyes may have proteins that are similar to the kind in your thyroid gland.
If you have Gravesâ disease, some other risk factors might raise your chances of getting thyroid eye disease, such as:
- You have certain genetic factors.
- You get radioiodine treatment.
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Problems Associated With Thyroid Eye Disease
Dry irritated eyes
TED may cause you to experience dry, irritated and often teary eyes. This is usually due to the eyelids retracting and or protruding. When the eyelids do not close completely at night, the cornea dries out and becomes quite uncomfortable. The use of lubricating ointment for the eye at night and artificial tears during the day can provide a great deal of relief. Do not be afraid to use the tears frequently, as much as every 1/2 to 1 hour if necessary.
Double vision
TED can cause swelling, irritation and scarring of the muscles that move the eyes. This can lead to double vision. Double vision may not be present all the time, sometimes it is noticeable only when looking in certain directions, while in other patients it is always present. Often the amount of double vision will change week to week. At times it can disappear completely without treatment. Once the double vision has been stable for at least several months, surgery can be performed to correct it if necessary. Your specialist will refer you to a specialist for the surgery.
Eyelid retraction
Eye protrusion
Vision loss
What Is The Connection With Thyroid Disease
In addition to the antibody or white cells that cause the eye problem, 90% of people with thyroid eye disease also have an antibody in their blood which causes an overactive thyroid gland. The overactive thyroid gland is called Graves Disease, after Dr Graves who first recognised it 200 years ago. The reason the autoimmune condition affects both the eyes and the thyroid, seems to be that they share a common molecule, the TSH receptor. The eyes and thyroid are not always affected at the same time. For example, the thyroid overactivity can come first and then the eye disease can develop even after the thyroid has been treated. Also, treatment of one does not treat the other. A small number of people who develop thyroid eye disease have no thyroid disturbance and some have an underactive thyroid.
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How Quickly Does Thyroid Eye Disease Progress
This active phase of thyroid eye disease may typically last from six months up to two years. During this time, symptoms may continue to change. Treatments such as surgical options are put on hold until healthcare providers feel certain they can get solid results.
How long does it take for thyroid eye disease to burn out?
It commonly lasts about six months to two years. After this, the inflammation settles, and this is known as the inactive or burnt out stage. TED may also be called thyroid associated ophthalmopathy , thyroid orbitopathy, Graves orbitopathy or Graves ophthalmopathy .
Does thyroid eye disease get worse over time?
Thyroid Eye Disease is a serious, vision-threatening condition that can get worse over time, but can be managed with treatment.
What Should I Ask My Doctor
When you see your doctor for follow-up visits, it’s helpful to have a list of questions ready. You can also bring along a family member or friend to help you remember your questions and write down your doctor’s answers.
Questions can include:
- What follow-up tests will I need to monitor my eyes?
- Who will I need to see for follow-up care?
- What types of treatments do you recommend?
- What kinds of side effects can they cause?
- How might thyroid eye disease affect my daily life?
- Should I call you when I have certain symptoms?
- What type of support is available for thyroid eye disease?
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What Causes Thyroid Eye Disease
TED is usually associated with systemic hyperthyroidism or Graves’ disease. This disease is caused by what is described as an autoimmune process. Autoimmune disease may be understood as a process by which the body sees some part of itself as being foreign and reacts to it much the same way that it would to any bacteria or virus.
In the case of Graves’ disease, the body sees the thyroid gland as the foreign object and produces antibodies that attack the thyroid gland. This often causes the thyroid gland to become over active.
The eye version of this disease is called Thyroid Eye Disease. However, in the case of TED, different antibodies attack the muscles associated with eye and eyelid movement. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain mostly independent of one another. The antibodies that attack the eye can cause inflammation and swelling of the fat and muscles around the eye, which is what can eventually cause bulging of the eyes, double vision and retraction of the eyelids.
Will my eyes go back to normal after treatment?
How Long Can Thyroid Eye Disease Last
The active phase can last anywhere from approximately 6 months to 2 years. This is followed by an inactive phase in which the disease progression has stopped. However, some symptoms such as double vision and bulging eyes can remain. In some people, cosmetic changes and significant disability can develop.
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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
How Do You Treat Bulging Eyes From Graves Disease
Inflammation of the tissues and muscles around the eye causes it to bulge. The immune response can cause so much swelling that the eye gets pushed forward and out of the socket.
Medications can help reduce the immune response or target the swelling. Prednisone or injected steroids are sometimes used.
Surgery is another option to correct the position of the eyes.
In orbital decompression surgery, tissue or bone is removed from behind the eye, creating space for the eye to fit back into position. Its generally done once inflammation is under control.
In some cases, the procedure is done in the active stage to help prevent damage to vision. Eyelid surgery can correct a retracted eyelid once the condition is well managed.
Other sculpting surgeries can help restore the eyes shape and appearance.
Graves disease doesnt go away, but it can be successfully managed. Graves disease and thyroid eye disease are connected but separate conditions. TED will follow its own course.
Management of Graves disease involves getting thyroid hormone levels into a target range.
In Graves disease, thyroid levels are initially high. There are different ways to help slow or block thyroid production. These include:
After treatment for Graves disease, thyroid levels can drop below target. To balance hormone levels, you may need synthetic thyroid hormone pills. These medications have been shown to be a safe treatment option.
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The Changes In My Face Have Affected Me Can Anything Be Done About Them
Some of the effects of thyroid eye disease improve with strict medical control and the passage of time. However, in a proportion of sufferers the changes persist long term. Many can camouflage these by simple measures such as growing a fringe or wearing tinted or dark glasses, but some experience considerable psychological difficulties as a result of changes in their appearance. This can result in loss of self-esteem, lack of self-confidence and anger at the changes. Relationships are also affected at many different levels. All this is hardly surprising as the face and particularly the eyes are the most significant point of contact between individuals.
Much can be done with surgery to improve the appearance and comfort of the eyes, but it may require more than one operation. With surgery, the eyes can often be returned to an appearance more like the eyes were before the disease began.