Common Questions About Thyroid Eye Disease
Dr. Kahana and the providers at Kahana Oculoplastic and Orbital Surgery have successfully treated thyroid eye disease with compassionate care for more than 30 years. We’ve compiled answers to the most common questions we receive to help guide you and your family on your journey with TED.
If you suspect you have thyroid eye disease (TED), seeking prompt medical evaluation from a qualified practitioner is important.
A: Thyroid eye disease is an autoimmune condition that affects eyelids and orbital tissues. It is typically associated with thyroid dysfunction such as Graves and Hashimoto’s disease, but can also develop in the absence of thyroid dysfunction. Thyroid eye disease presents with a wide range of signs and symptoms, which often differ between patients, and can lead to blindness if left untreated.
A: No, thyroid eye disease is different from Graves disease and should be treated as a separate but associated condition. It is nearly impossible to successfully manage thyroid eye disease without also treating the associated thyroid disease.
A: Yes, you can have “euthyroid” thyroid eye disease, meaning you have the signs and symptoms of thyroid eye disease without abnormal thyroid functions. This is less common than developing thyroid eye disease following a diagnosis of thyroid dysfunction. It is highly likely that those with euthyroid thyroid eye disease will eventually develop thyroid dysfunction, and should have their thyroid hormone levels checked routinely.
A: Initial signs and symptoms of thyroid eye disease include dry and irritated eyes, sensitivity to light, and eyelid swelling or retraction.
A: This varies by individual. Some patients experience significant improvement, especially with proper treatment. Some changes may be permanent and require surgical correction after the active phase has stabilized.
A: Several factors can worsen the condition:
While you can’t prevent the disease entirely, you can modify risk factors:
A: TED treatment is focused on improving symptoms, minimizing risk factors, and medical and surgical intervention. Possible treatments include:
A: Surgery is preferably reserved for those whose disease is stable, usually after six months of inactive disease. Surgery is considered more urgent when there is risk to the optic nerve (risk to vision) and will be performed during active disease in these cases. Surgery is performed in a specific sequence: orbital decompression first, followed by eye muscle surgery, then eyelid surgery if needed.
A: Tepezza® (teprotumumab) is an FDA-approved medication specifically for thyroid eye disease. It’s given through eight IV infusions over 24 weeks and has shown effectiveness in reducing eye protrusion and double vision during the active and chronic phases of the disease.
A: Care requires a team that includes your primary care physician, an endocrinologist, an ophthalmologist, and an oculoplastic specialist who is experienced in managing orbital disease.
A: Yes. An anti-inflammatory diet can help manage symptoms. This includes:
Improvements may be noticed after about three months on this diet.
A: This depends on your symptoms, particularly whether you have double vision or visual impairment. Many people can continue normal activities, but you should discuss any vision changes with your doctor to ensure safety.
A: You typically need team-based treatment from:
A: During the active phase, ongoing monitoring by an ophthalmologist is essential, even if symptoms seem mild. The frequency of visits will depend on your symptoms’ severity but may be as often as every few weeks during the active phase of the disease.
A: The impact varies by individual, but common adjustments might include:
Thyroid eye disease often changes the comfort and appearance of your eyes. This can cause an emotional impact.
A: Yes, several resources can help:
A: With proper treatment, most patients can achieve positive results. While some may have permanent changes, these can usually be addressed with surgery after the active phase. The key is early recognition and appropriate treatment.
A: While uncommon, reactivation can occur. This makes ongoing observation very important, even after the condition has stabilized. Maintaining a healthy lifestyle and stable thyroid function helps reduce this risk.
A: The disease has an active (inflammatory) phase and a stable (fibrotic) phase. The active phase typically lasts 6 months to 3 years, while the stable phase represents the chronic stage when inflammation has subsided but changes may be permanent. Timing is variable, and patients can also experience flares of their eye disease even once in the stable/chronic phase.
A: Timing is critical because different treatments are most effective during specific phases. Medical treatments are most effective during the active phase, while surgical interventions are typically performed during the stable phase, except in cases of sight-threatening complications.
A: The primary goals are:
A: Treatment may include:
A: Studies show that 60-80% of patients have some response at 24 weeks of teprotumumab infusions. At least half of these patients maintain a sustained response.
A: Important lifestyle modifications include:
A: Surgery may be necessary in several situations:
A: The typical sequence is:
Some people need one or two of the above. Some need none. Some need all three. Each patient is treated as an individual for their specific needs.
A: Typically, there should be a 3-6 month waiting period between orbital decompression and strabismus surgery, and another waiting period before eyelid surgery. This allows for proper healing and stabilization between procedures.
A: Several, which include:
A: Initial healing takes 1-2 weeks, but complete resolution of swelling may take 3-6 months. Final outcomes are typically assessed at 6-12 months post-surgery.
A: Common restrictions include:
A: Complications are rare, but there are always risks with any medical/surgical therapy. Key risks include:
A: While uncommon, reactivation can occur. Maintaining regular follow-up appointments and avoiding risk factors (especially smoking) helps reduce this risk.
A: Key preventive measures include:
A: Active phase requires visits with the TED specialist every 4-12 weeks. Once chronic or minimally symptomatic, every 6 months is reasonable.
If you suspect you have thyroid eye disease (TED), seeking prompt medical evaluation from a qualified practitioner is important.
Early intervention can significantly improve outcomes in treating and managing this condition. Understanding TED – its symptoms, progression, risks, and treatment options – is the first step in taking control of your eye health and overall wellbeing.
