Myths About Thyroid Eye Disease (TED)

Once diagnosed with any disease our minds go immediately to all of the worst case scenarios we have heard. I was guilty of doing just that when diagnosed with thyroid eye disease (TED). I immediately thought I was doomed to have bulging eyes the rest of my life or maybe even lose my vision.

Luckily, I did my research and hit my doctors up with a barrage of questions. My motto was always, "Give me the facts and help me with an action plan to move forward."

The first step for me was to understand what was the real truth about TED and what was just hype. At that time in my life I had found different articles addressing myths and misconceptions. Let's tackle these together.

MYTH # 1: You have to have an overactive thyroid to develop TED.

In short, only approximately half of those with an overactive thyroid (Graves' disease) develop TED. About 6% of people with a form of hypothyroidism (Hashimoto thyroiditis) develop TED. There is a small percent of people with normal functioning thyroids who go on to develop TED.^1-3

MYTH # 2: There is no specific medicine to treat thyroid eye disease.

This misconception left me feeling hopeless. I thrive on action plans so I immediately panicked thinking I would be on my own and had to simply wait for the disease to do its damage and burn itself out. For many, this is not true anymore. My doctor informed me about the new injection that was coming out in 2020. Tepezza. This option may not be for everyone, but it is available.

MYTH # 3: Treatment for thyroid disorders automatically treats thyroid eye disease.

The easiest way for me to understand this was to know that thyroid disorders and thyroid eye disease can have an immune system connection, but they are different conditions with different symptoms, so treating one will not treat the other.

Treatment in the active phase of thyroid eye disease (roughly the first 2-3 years) is also different than treatment in the stable remission phase (usually lifelong).

There are less invasive treatments during the active phase, too. I used many of these, such as the artificial tears for the dry eyes, masks or taping to keep eyes closed at night and oral corticosteroids short-term to ease double vision. Many have also gone through radiation to lessen swelling. I found peace of mind knowing that I could (and did) choose surgery to treat the damage left from the active phase.

MYTH # 4: Radiation zaps thyroid eye disease for good.

I confess, I felt cautious about getting radiation and if my doctor had suggested it during the active phase, I would have done my homework on it. It never came up for me but this is what I have since learned about it. Radiation can be an effective way to lessen swelling around the eyes. I would be interested in hearing others' experiences with this treatment.⁵

MYTH # 5: Smoking is not directly related to thyroid eye disease.

Not only does smoking raise your risk of developing TED, it can make your symptoms worse.⁴

MYTH # 6: If thyroid eye disease affects your appearance, you just have to accept it.

Initially, I thought this was true and I was not willing to accept it! I knew in the end, after treatments and surgeries there would be subtle changes left to my eyes but I was not willing to live with bulging eyes and retracted eyelids.

When I was going through the painful and life changing active phase, I found solace in the fact that I could choose treatments and surgeries to repair the damage thyroid eye disease left me with.

MYTH # 7: All the ways to address thyroid eye disease are "drastic".

We have talked about Tepezza infusions, radiation, surgery and lifelong medication for treatment of TED. Some of these treatments may not be for you. Many TED patients choose to get relief from symptoms by using eye drops and protecting their eyes from the sun and lights by wearing dark glasses; or wearing special glasses with prisms or using an eye patch to correct double vision.

It is important to talk with your doctor about which treatment route is best for you and take it step by step together.

If you're anything like me, knowing what to expect and what not to expect with your new diagnosis, can calm your anxiety and help you make the best choices for your personal treatment plan.

What myths have you heard about thyroid eye disease?

Share some of the myths or misconceptions that you have heard about TED in the comments section below. Have you heard any of the ones above?