This painful and unsightly autoimmune condition is often misdiagnosed and undertreated. You could help change that.
Thyroid eye disease (TED) is a rare autoimmune condition that causes inflammation in the tissues and muscles around one or both eyes, often giving them a bulging appearance. Early diagnosis and effective treatment can relieve symptoms and reduce the risk of lifelong pain, decreased quality of life, permanent disfigurement and vision loss.
One of the biggest barriers to care for Australian TED patients is a lack of awareness of the condition in the health sector and the general population. Therefore, there is a pressing need for people living with TED and their health providers to have access to reliable information about the condition.
Some facts
- Other names for TED include Graves’ eye disease, Graves’ ophthalmopathy and thyroid ophthalmopathy.
- Roughly 30% to 40% of people with Graves’ disease experience signs and/or symptoms of TED1 while around 90% of people with TED have Graves’ disease2.
- Up to 6% of people with Hashimoto’s disease may develop thyroid eye disease.3
Early symptoms of TED can include gritty, dry, red or inflamed eyes. These can be misdiagnosed as dry eyes or infections even when eye bulging and crossed eyes become apparent.
Other symptoms can include eye pain or eye pressure, retracted eyelids, watery eyes, puffy eyes and eyelids, light sensitivity, and misaligned or crossed eyes (causing double vision). Some may end up with permanent eye disfigurement and damage, including damage to the optic nerve.
People with TED often feel self-conscious and avoid being around others, especially if they are in (or seeking) a close personal relationship. They may also struggle with reading, watching TV, cooking or driving, which can lead to feelings of depression because they are unable to do the things they enjoy. Some need to stop work or change the type of work they do, which can lead to more emotional and financial distress.
There are two distinct phases of TED, the acute or active phase and the chronic or inactive phase. The acute phase occurs suddenly and can last up to three years. In the chronic phase, symptoms may improve, but some (such as bulging eyes) can remain.
Patient Veronica before and after her thyroid eye disease symptoms appeared (shared with her permission)
Diagnosis and treatment
TED cannot be diagnosed by laboratory test or symptoms. Doctors need to conduct several tests to help eliminate other possibilities and see what is happening within and around the person’s eyes.
Effective TED treatment can relieve not only symptoms but underlying inflammation that can cause other serious problems over time. Therefore, it is important for patients to get an accurate diagnosis and see an ophthalmologist early in their disease journey.
Topical treatments and lifestyle changes only help with mild TED symptoms or in conjunction with medical treatments. Treatments for moderate and severe cases can include a course of infusions with intravenous methylprednisolone, oral immunotherapy, radiotherapy and/or corrective surgery.
The biologics rituximab and tocilizumab can be used in some advanced cases. However, they were developed to treat other conditions. A new biologic, teprotumumab, is being considered by the PBAC and the TGA as what would be the first targeted therapy in Australia to be developed and approved specifically for TED.
A new home for thyroid eye disease resources
Global Healthy Living Foundation Australia (GHLF Australia) saw a gap in quality information and support for people with TED, so we stepped up and created our Thyroid Eye Disease Education and Resource Hub to help address this issue.
We believe our hub will also be of value to GPs, endocrinologists, rheumatologists, dermatologists, gastroenterologists and other interested health professionals – especially as optimal TED care requires a multidisciplinary approach.
“People living with TED are dealing with more than just an eye disease, including anxiety, depression, and social isolation due to the visible and often stigmatised nature of the disease,” said Naomi Creek, the GHLF Australia National Coordinator. “However, many aren’t aware of the range of evidence-based treatments and holistic strategies available to help them manage all aspects of their condition.”
“We’ve created our TED Education and Advocacy Hub as a go-to resource, filled with disease information and expert advice to help people live well with this condition,” said Creek. “We aim to empower patients to discuss their condition openly with their healthcare team, so they can share decisions about their treatment and management strategies.”
The hub includes insights and resources for living well with TED, such as:
- Causes, symptoms and diagnosis
- Current treatment options
- Guidance on building a health professional team
- Advice on self-management and mental health
- Strategies for seeking support from others
- Personal stories from people living with TED
- Tips for advocating for access to new treatments in Australia.
Help us share this resource
Equip your TED patients and your colleagues with the tools they need to better understand TED by sharing the link to our Thyroid Eye Disease Education and Resource Hub with them today: ghlf.org.au/thyroideyedisease
Rosemary Ainley wrote this article on behalf of the GHLF Australia and CreakyJoints Australia team.
References
- Mivision: First Australian Thyroid Eye Disease Clinic. 2023 May 1, https://mivision.com.au/2023/05/first-australian-thyroid-eye-disease-clinic
- Kossier et al. Endocrine Society. Patient Resources. Thyroid Eye Disease. 2022 January 24. https://www.endocrine.org/patient-engagement/endocrine-library/thyroid-eye-disease
- Jamal I. Hashimoto’s Thyroiditis Associated Thyroid Eye Disease: A Success Story of Teprotumumab, Journal of the Endocrine Society, Volume 5, Issue Supplement_1, April-May 2021, Page A932, https://academic.oup.com/jes/article/5/Supplement_1/A932/6241103
