Imagine you’ve finally tackled thyroid eye disease (TED), one of the most frustrating medical conditions you’ve ever combated. You’ve gone through treatments and taken your medications, and life feels like it’s heading back to normal. Then, one day, you notice an unsettling sensation—some dryness, a subtle bulge, or extra sensitivity to light. Could TED be making an unwelcome comeback?
The truth is, while many people experience relief after treatment, thyroid eye disease can be unpredictable. While therapies like TEPEZZA® (teprotumumab) can work wonders over 6 to 24 weeks, they don’t guarantee a lifetime of TED-free living. Much like a wildfire, there’s always a chance of hidden embers reigniting even after it seems extinguished.
The good news is that understanding TED, its triggers, and how to prevent recurrence can empower you to stay one step ahead. Keep reading for information on whether thyroid eye disease can return, factors influencing recurrence, and how to reclaim your long-term eye health.
Thyroid Eye Disease (TED) and Its Symptoms
Thyroid eye disease is a complex autoimmune condition that causes the immune system to engage in an ongoing feud around the eyes. The eye symptoms can include swollen tissues, inflamed eye muscles, and severe symptoms like bulging eyes and double vision. In extreme cases, optic nerve compression can threaten eyesight.
If you’ve dealt with TED for a while, you’re likely familiar with its toll on your physical, mental, and emotional well-being.
For most, TED accompanies Graves’ disease, an overactive thyroid condition. However, normally functioning and underactive thyroids can also be affected, making the disease unpredictable. For those with Graves’ and thyroid conditions, it’s important to treat both the thyroid gland and eyes as part of a comprehensive care plan.
Can TED Go into Remission After Treatment?
The easy answer is yes; thyroid eye disease can go into remission after treatment.
However, remission doesn’t mean the disease is permanently gone. Many treatments aim to reduce inflammation, minimize swelling, and stabilize symptoms, allowing your eyes to heal enough that life returns to normal. For some, remission is like hitting “pause” rather than “stop.”
Some patients achieve remission that lasts for years, while others may notice symptoms creeping back within months. The likelihood of recurrence depends on several factors, such as how aggressively the disease was treated and how well you can manage underlying triggers, like a chronic thyroid condition.
Factors that Influence the Risk of Recurrence
- Smoking significantly increases inflammation and worsens thyroid eye disease symptoms, raising the risk of recurrence.
- Stress triggers autoimmune responses, which may provoke TED flare-ups.
- Incomplete treatment or partial symptom relief during the initial treatment can leave room for recurrence.
- Hormonal changes, such as pregnancy or menopause, can affect immune function and increase thyroid eye disease risks.
- Lack of follow-up care or inconsistent use of prescribed medications can lead to an increased chance of TED recurrence.
Does Treating an Underlying Thyroid Condition Prevent TED Recurrence?
Managing your thyroid condition is crucial in the battle against TED recurrence. Stable thyroid hormone levels give your immune system fewer reasons to rebel, and regular monitoring by an endocrinologist ensures changes are detected early.
Treating your thyroid isn’t a guaranteed solution. Thyroid eye disease is a partially independent condition, so while it’s related and sometimes caused by an underlying thyroid condition, addressing an underactive or overactive thyroid may not solve TED issues. You might still experience flare-ups, even if your thyroid is perfectly balanced.
Simultaneous ongoing care from an endocrinologist and an ophthalmologist is vital to ensuring overall orbital health.
Understanding the Chronic Nature of TED
Thyroid eye disease is considered a chronic condition, meaning it doesn’t come with an expiration date. While treatments like corticosteroids, radiation, and TEPEZZA® (and other biological therapies) can provide significant relief, TED often requires lifelong monitoring and management. Once you have a flare-up, you may be prone to having them again (and again) over a lifetime.
The chronic nature of thyroid eye disease doesn’t doom you to constant flare-ups. Many experience long remission by addressing risk factors, adhering to follow-up care plans, and living healthier.
Common Triggers That May Cause TED to Reappear
Thyroid eye disease doesn’t come back on a whim—specific triggers often light the fire. Knowing your triggers can help you avoid them, putting you in the driver’s seat to manage your condition.
- Smoking, which worsens inflammation and reduces treatment effectiveness.
- Stressful events, like illnesses, surgeries, and emotional problems.
- Hormonal shifts, including pregnancy, menopause, or changes in hormone therapies.
- Missed doctor visits or skipped appointments for prescribed medications.
- Poor sleep—an often-overlooked factor that impacts immune health and inflammation.
Steps to Reduce the Risk of Return
While you can’t control everything, there are practical ways to lower your chances of TED making a comeback, such as:
- Quit smoking—it’s the most impactful change you can make.
- Stick to your thyroid treatment plan and schedule regular blood tests.
- Wear lightweight sunglasses with polarized lenses to protect your eyes from UVA/UVB rays and pollutants.
- Manage stress through yoga, meditation, or counseling.
- Prioritize good sleep hygiene, like getting 8 to 9 hours of nightly rest, to support immune health.
- Keep follow-up appointments with your healthcare team to catch TED recurrence symptoms early.
What to Do If Thyroid Eye Disease Returns
If thyroid eye disease returns, don’t worry. Many effective surgical and nonsurgical treatments are available, including surgeries or less invasive options like TEPEZZA® (a biological therapy). The best thing you can do is remain positive and proactive. Partner with your ophthalmology team to adjust treatments, revisit strategies, and review any advancements in therapy that may help manage your TED symptoms.
TED may be a chronic condition, but you’re not powerless. There’s always a possibility of recurrence, but it’s not inevitable. Adopting healthy habits, maintaining routine checkups, and managing stress can reduce the likelihood of thyroid eye disease coming back.
Sources:
https://pubmed.ncbi.nlm.nih.gov/25621464
https://www.verywellhealth.com/thyroid-eye-disease-progression-and-prognosis-5113495
https://www.webmd.com/eye-health/graves-eye-defined
https://my.clevelandclinic.org/health/diseases/17558-thyroid-eye-disease