FAQs
TED and Graves' disease are both autoimmune conditions that can significantly impact daily life,1 but with the right information and resources, they can be managed effectively. Whether you’ve recently been diagnosed, are managing symptoms, or caring for someone who is, you may want to know more. Here are some commonly asked questions to help you get a better understanding of TED and Graves’ disease.
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What is thyroid eye disease (TED)?
Thyroid Eye Disease, often referred to as TED, is an autoimmune condition where the immune system mistakenly attacks the tissues around the eyes, causing inflammation and swelling.1 This can lead to symptoms like bulging eyes, double vision, eye pain, and even vision loss in more severe cases.2,3
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What are the symptoms of TED?
Common symptoms of TED include eye bulging (proptosis), redness, dryness, irritation, watery eyes, sensitivity to light, double vision, and in some cases, difficulty moving the eyes.1 In severe cases, TED can lead to vision loss if the optic nerve is affected.3,4
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Can people living with TED experience a ‘flare’?
Yes, TED can ‘flare’, meaning that signs and symptoms may return or worsen. In a study, approximately 15% of TED patients (or 62 of 415 people) experienced flares regardless of how the disease had been treated.5
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What Causes TED?
TED occurs when the body’s immune system mistakenly attacks the muscles and tissues around the eyes.1 This immune response causes inflammation, swelling, and sometimes damage to these tissues.1 Although the exact cause of TED isn’t fully understood, there are several factors that can increase the risk of developing the condition.6,7,8
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Who is at risk of developing TED?
TED is most commonly seen in people with Graves’ disease,9,10 but it can also occur in people with Hashimoto’s (hypothyroidism) or people without a thyroid condition.11 Smoking significantly increases the risk and severity of TED. Women are more likely to develop TED than men, and it usually occurs in people over the age of 40.5,6,7
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Who treats TED?
If possible, it’s best that an endocrinologist (hormone doctor) and an ophthalmologist (eye doctor) or oculoplastic surgeon work closely together to manage TED.12 You may be referred to a specialist centre to ensure correct and timely diagnosis and treatment. You may also be looked after by doctors (and other healthcare professionals) with additional training on your specific conditions. These doctors may include endocrinologists, oculoplastic surgeons and neuro ophthalmologists, orthoptists, among others.
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How is TED Diagnosed?
TED is typically diagnosed through a combination of medical history, physical examination, and imaging tests like CT or MRI scans to assess the tissues around the eyes.15 Blood tests to check thyroid levels and antibodies can help confirm an autoimmune thyroid connection.14
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Can TED be Treated?
Yes, TED can be treated. Early intervention can help manage symptoms and prevent progression. Treatments may include medications and, in some cases, surgery.16
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Can TED still be Treated if it was Diagnosed Some Time ago
and/or is now ‘Inactive’?Yes, TED can be treated at any time regardless of how long ago the diagnosis was, or what symptoms are being experienced.
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Is TED a Symptom of Graves’ Disease?
Many people think Graves’ disease and Thyroid Eye Disease (TED) are the same. That’s because people often have both diseases at the same time but TED and Graves’ disease are two separate conditions that require different treatment.17,18 If you have Graves’ disease, your body’s immune system attacks the thyroid. If you have TED, your body’s immune system attacks the tissues behind your eyes.19
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What is Graves’ Disease?
Graves’ disease is an autoimmune disorder where the immune system attacks the thyroid by mistake and causes it to become overactive. This is known as hyperthyroidism. The overactive thyroid makes more thyroid hormone than your body needs, which can cause a number of health problems.18
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What Causes Graves’ Disease?
Graves' disease is caused by a malfunction in the immune system. The body produces antibodies known as thyroid-stimulating immunoglobulins (TSIs) that mistakenly target the thyroid, causing it to produce excessive amounts of thyroid hormones.18 While the exact trigger is unknown, genetic factors, stress, infections, and environmental factors may play a role.18
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What are the Symptoms of Graves’ Disease?
Symptoms of Graves' disease can vary but often include weight loss, rapid or irregular heartbeat, heat intolerance, sweating, anxiety, tremors, and fatigue. If left untreated, Graves’ disease can lead to serious health issues.18
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Can Graves’ Disease be Treated?
Yes, Graves' disease can be treated. Common treatments include antithyroid medications, which reduce thyroid hormone production, and radioactive iodine therapy, which destroys overactive thyroid cells.20 In some cases, surgery to remove the thyroid gland may be recommended.21 It is important to remember that treating your Graves’ disease will not treat your TED.
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What is Thyroid Eye Disease and how is it Related to Graves’ Disease?
Thyroid Eye Disease (TED) is an autoimmune condition that often occurs in people with Graves' disease.1 In TED, the immune system attacks the tissues around the eyes, leading to symptoms such as eye bulging, dryness, and vision changes. Not everyone with Graves' disease will develop TED, but the two conditions are related.1 TED and Graves’ are separate conditions that require different treatment.16,17
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References
- British Thyroid Foundation. Your guide to thyroid eye disease. https://www.btf-thyroid.org/thyroid-eye-disease-leaflet. Accessed: April 1, 2025.
- Wang Y, Patel A, Douglas RS. Thyroid Eye Disease: how a novel therapy may change the treatment paradigm. Ther Clin Risk Manag.2019;15:1305-1318
- Barrio-Barrio J, Sabater AL, Bonet-Farriol E, et al. Graves’ Ophthalmopathy: VISA versus EUGOGO Classification, Assessment and Management. Journal of Ophthalmology. 2015; 24912
- Oculase Eye Clinic. Thyroid Eye Disease. https://oculase.com/condition/thyroid-eye-disease-ted/#:~:text=The%20optic%20nerve%2C%20which%20connects,also%20lead%20to%20secondary%20glaucoma. Accessed: April 1, 2025.
- Patel P, Khandji J, Kazim M. Recurrent Thyroid Eye Disease. Opthalmic Plastic and Reconstructive Surgery. 2015; 31:445-8.
- Lazarus J. Epidemiology of Graves' orbitopathy (GO) and relationship with thyroid disease. Best Pract Res Clin Endocrinol Metab. 2012. Jun;26(3):273-9
- Bartley GB, The epidemiologic characteristics and clinical course of ophthalmopathy associated with autoimmune thyroid disease in Olmsted County, Minnesota. Trans Am Ophthalmol Soc. 1994; 92: 477–588
- Szelog J, Swanson H, Sniegowski MC, et al. Thyroid Eye Disease. Mo Med. 2022 Jul-Aug;119(4):343-350
- British Thyroid Foundation. Thyroid Eye Disease leaflet. https://www.btf-thyroid.org/thyroid-eye-disease-leaflet. Accessed: April 1, 2025.
- Jain D, Mor S, Aggarwal H, et al. Thyroid Association Ophthalmopathy in Hashimoto's Thyroiditis: a Case Report. Maedica (Bucur). 2017 Jan;12(1):65-67
- ATA. Hypothyroidism. https://www.thyroid.org/patient-thyroid-information/ct-for-patients/july-2016/vol-9-issue-7-p-11-12/#:~:text=Indeed%2C%20these%20disorders%20are%20the,by%20thyroid%2Dassociated%20eye%20disease. Accessed: April 1, 2025.
- Burch HB, Perros P, Bednarczuk T, et al. Management of Thyroid Eye Disease: a consensus statement by the American Thyroid Association and the European Thyroid Association. Thyroid. 2022;32(12):1-32
- Top Doctors. Oculoplastics. https://www.topdoctors.co.uk/medical-dictionary/oculoplastics Accesssed: April 16, 2025
- Moorfields Private Eye Hospital. https://www.moorfields.nhs.uk/private/eye-conditions-and-treatments/neuro-ophthalmic-conditions Accessed: February 24, 2025
- Shah SS, Patel BC. Thyroid Eye Disease. [Updated 2023 May 22]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK582134/ Accessed: February 28, 2025
- Verity DH, Rose GE. Acute thyroid eye disease (TED): principles of medical and surgical management. Eye (Lond). 2013 Mar;27(3):308-19
- Ueland, HO, Ueland GÅ, Løvås K, et al. Novel inflammatory biomarkers in thyroid eye disease. Infl biomarkers in thyroid eye disease. 2022; 187(2):293-300
- Smith TJ, Hegedüs L. Graves’ disease. N Engl J Med. 2016;375(16):1552-1665
- NIDDK. Graves’ Disease. https://www.niddk.nih.gov/health-information/endocrine-diseases/graves-disease#causes Accessed: February 28, 2025
- Cleaveland Clinic. Graves’ Disease. https://my.clevelandclinic.org/health/diseases/15244-graves-disease Accessed: February 28, 2025
- NHS. Graves Disease. https://www.uhsussex.nhs.uk/resources/graves-disease/ Accessed: April 15, 2025
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