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.
This or That
Did you have a lot of questions about TED when you were diagnosed?
Having an overactive thyroid means you will 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
There is no treatment.
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.
Treating other thyroid disorders treats TED.
Although it is possible for other thyroid disorders to exist with TED (comorbidities), TED is a separate condition and has to be treated separately than other thyroid conditions. Treatment in the 2 different phases of TED can also look different for different people.
There are less invasive treatments during the active phase. 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. Some people have decided to go 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 once I was in the inactive phase.
Radiation gets rid of thyroid eye disease.
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
Smoking and TED have no connection.
Not only does smoking raise your risk of developing TED, it can make your symptoms worse.4
TED can impact your appearance and you can't do anything about 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.
Get information, and discuss treatment with your doctor
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 sunglasses. People may also decide to wear prism lenses, or an eye patch to help with different symptoms.
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?
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