Thyroid Eye Disease: Active Phase Treatments

Thyroid eye disease (TED) is a condition linked to problems with the thyroid gland, which produces important hormones. When the thyroid is overactive (often due to Graves’ disease), it can cause TED. This condition affects the eyes, leading to symptoms like bulging eyes, dryness, and double vision. Here, we’ll look at the current treatments available in the UK to help manage active TED, along with an overview of possible side effects.

1. Steroids

Steroids, or corticosteroids, are commonly used to treat TED because they reduce inflammation, but they can have side effects, especially when used for long periods.

  • How it works: Steroids calm the immune system, stopping it from attacking the tissues around the eyes.
  • Pros and cons: Steroids can act quickly, which is helpful if you have severe symptoms. They can sometimes cause:
    • Short-term side effects: Weight gain, increased appetite, trouble sleeping, mood changes, and water retention.
    • Long-term side effects: Bone thinning (osteoporosis), high blood pressure, high blood sugar (which may lead to diabetes), and muscle weakness.

Steroids can be highly effective but are often used for a limited time to avoid these effects.

2. Mycophenolate Mofetil (MMF)

Mycophenolate Mofetil, often called MMF, is an immunosuppressant sometimes used for TED, especially if steroids haven’t worked well or have caused too many side effects.

  • How it works: MMF slows down the immune system’s response, helping reduce inflammation around the eyes.
  • Pros and cons: MMF may have fewer serious side effects than steroids, but it also comes with some considerations:
    • Infection risk: MMF can slightly increase the chance of infections like colds, as it weakens the immune system.
    • Stomach discomfort: Some people experience mild nausea, stomach pain, or diarrhoea.
    • Blood changes: MMF can affect blood cell counts, which may lead to tiredness or easy bruising. Routine blood tests help monitor this.
    • Exhaustion and confusion: Some people report feeling unusually tired or mildly confused, especially when first starting treatment. This generally improves over time, but if it doesn’t, doctors may adjust the dose.

These side effects are typically manageable, and doctors monitor patients closely, adjusting the dose if needed.

3. Rituximab

Rituximab is another immunosuppressant sometimes used for TED. It’s typically given by IV in a hospital.

  • How it works: Rituximab targets specific immune cells that may be causing TED, reducing inflammation and easing symptoms.
  • Pros and cons: Rituximab can be a good option for some people, but, as with other immunosuppressants, it has a few side effects:
    • Infection risk: Because it lowers the immune system’s defences, rituximab can slightly raise the chance of infections.
    • Infusion reactions: Some people feel a bit chilly, tired, or lightheaded during the IV infusion, but these symptoms usually go away soon after.

Doctors will monitor you closely, and these reactions are generally manageable.

4. Radioactive Iodine (RAI)

Radioactive Iodine, or RAI, is often used to treat hyperthyroidism and Graves’ disease. While RAI can sometimes exacerbate TED, it’s still an option, especially in cases where other thyroid treatments are ineffective.

  • How it works: RAI selectively targets and destroys overactive thyroid cells, helping reduce excessive hormone production.
  • Pros and cons: RAI is an effective long-term solution for hyperthyroidism, but it can occasionally worsen TED symptoms temporarily. For this reason, RAI may be combined with other treatments, such as steroids, to minimize eye symptoms. Side effects can include:
    • Temporary worsening of TED symptoms: Doctors may prescribe steroids to counteract this effect.
    • Risk of hypothyroidism: RAI can reduce thyroid function too much, leading to hypothyroidism, which is typically managed with thyroid hormone replacement therapy.

Patients considering RAI for Graves’ disease and TED should discuss all options with their doctor, as each case may differ.

5. Selenium Supplements

Selenium is a mineral found in certain foods and available as a supplement. Some research suggests selenium might help with mild TED, especially in areas where soil selenium is low, such as parts of the UK.

  • How it works: Selenium is an antioxidant, helping protect cells in the body from damage and easing inflammation.
  • Pros and cons: Selenium is affordable and generally safe, but it’s only likely to help people with mild TED and isn’t strong enough for more severe cases. Taking too much selenium may cause mild digestive discomfort.

6. Teprotumumab

Teprotumumab is a newer drug that’s shown good results for TED but it is not yet widely available for use in the UK. It’s an IV treatment given in a hospital setting. Teprotumumab is a monoclonal antibody drug used specifically to treat TED.

  • How it works: This drug blocks certain immune pathways to reduce swelling and stop the eyes from bulging further.
  • Pros and cons: Teprotumumab can be effective, especially in early TED, but it has some side effects that doctors will discuss with you:
    • Hearing changes: Some people experience temporary hearing changes or ringing in the ears, though this is rare.
    • Muscle and joint pain: This can happen in some cases but often goes away after treatment.
    • Digestive issues: Mild diarrhoea or nausea can sometimes occur.
    • Blood sugar levels: Teprotumumab can cause a temporary rise in blood sugar, so people with diabetes or those at risk may need to monitor their levels more closely.

Overall, Teprotumumab has promising benefits, and doctors monitor for any side effects.

Special Note on Teprotumumab

Teprotumumab, branded as Tepezza, is currently under review for treating Thyroid Eye Disease (TED) in the UK. This medication, which was first authorised in the United States, has shown effectiveness in reducing TED symptoms, including bulging eyes and double vision. Teprotumumab operates by blocking the IGF-1 receptor pathway, which is instrumental in TED progression, offering a promising, non-surgical option for managing this often disabling condition.

In early 2024, Amgen submitted an application to the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) for approval to market teprotumumab. If authorised, it would become the first approved TED treatment available in Europe, offering an alternative to current treatments that primarily involve steroids or surgery. Other countries, including Japan and Canada, are also evaluating the drug for regulatory approval, highlighting a growing global interest in the treatment​

Further updates on its availability in the UK will depend on the outcome of ongoing assessments by both the MHRA and the European Medicines Agency (EMA).

Choosing the Right Treatment

The choice of treatment for TED depends on how severe your symptoms are, how long you’ve had the disease, and any other health conditions you may have. Each treatment has benefits and possible side effects, so doctors will help you choose the best plan based on your needs.

What’s Next?

Research into TED is ongoing, and scientists are hopeful for even better treatments in the future. Managing TED can be challenging, but knowing the options available can make it easier to protect your eyes and manage symptoms.

If you think you may have symptoms of TED, speaking to a doctor or eye specialist as soon as possible can make a big difference.

About TEDct

TEDct exists to improve the lives of those with thyroid eye disease by developing a supportive community of patients and professionals.

If you are a TED sufferer looking to connect with other people facing similar experiences with TED, consider joining our private Facebook group, Thyroid Eye Disease Support UK. It’s a great space for sharing support and insights with fellow TED warriors.

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