Ask the Expert: Thyroid Eye Disease

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February 17, 2023

The Expert: 

Raymond Douglas, M.D., Ph.D., is a Professor, Ophthalmologist, Plastic Surgeon, and Co-Director of the Thyroid Eye Disease Program at Cedars-Sinai, Surgery. His laboratory is interested in thyroid eye disease and facial paralysis, and they have identified key molecular targets for thyroid eye disease. Douglas has just completed the largest clinical trial in the disease for a biologic treatment.

What is Thyroid Eye Disease, otherwise known as TED? 

Thyroid eye disease is associated with an autoimmune disease, typically of the thyroid, so the immune system attacks the thyroid and it attacks the eyes, and they’re usually associated but they are separate diseases. And thyroid eye disease is when the immune system attacks the tissue around the eyes, causes the eyes to become red, swollen, bulgy – even double vision. And rarely, in some patients, uh, think the tissue can get so engorged and so large that there can even be vision loss, and so it’s been an under-recognized condition for some time now.

What are the main symptoms of TED?

So it’s often associated with a thyroid abnormality, such as Graves disease most commonly, but it can be Hashimoto’s. But what often happens is that the eyes start to change, and meaning change, both in the mirror and in how patients feel. For example, you might notice on photos the eyes are very wide open or that they’re, you know, so my patients describe them that they’re retracted or or just you know a surprised look. That can happen. You can have those abnormal swelling around the eyes and bulging, but the eyes can also be red and painful and difficulty going outside, tearing all the time, you know, just difficulty seeing with blurry vision. So it happens all around the eyes but certainly can affect the vision and the function for people.

What should women expect at an eye exam for TED? 

A lot of times, the exams and who you see, you may just be going in because your eyes don’t look right or feel right. And so what you really want to expect is someone who’s going to consider the diagnosis if you don’t already diagnosed with thyroid eye disease and kind of recognize some of the signs. So you want a physician who’s going to take a look, ask questions, ask a thyroid history, ask how you’re feeling with the eye, you know, what’s going on with your eyes. And then typically you’ll get a slit lamp exam or a further exam of the eyes themselves. And this is really important because in thyroid eye disease, there’s no particular test or lab test. It’s often a clinical diagnosis, so it’s really important to have someone who’s going to listen to you, take a look at the eyes and even considers the diagnosis, because that that often is the most overlooked thing. People will go to many physicians and think they’re allergies, and and you know, we put on drops, etc., but really it’s due to the thyroid eye disease.

How can women know what treatments are right for them?

So the treatments are really tailored now. Um, so there are a variety of options, and as you know, when you have a variety of options, sometimes it can become incredibly infusing confusing. But the most important thing is that there are medical options and then there are surgical options, and you really need to have an in-depth discussion. It’s far too short for us to have that discussion here, but depending upon a woman’s age, medical factors, and you know, that are going on, the medical option may be appropriate or maybe inappropriate, but the most important thing is you have to be presented with both options to really understand what you can do. And then you can come up with a precise treatment plan, um, for you, as you move forward. But really, being presented with both options is really a very important part of the process.

Is treatment or surgery only for cosmetic reasons?

This is one of the ones that so many patients, they’ll even feel guilty for wanting to have treatment because it’s been suggested, oh well, it’s just a cosmetic thing you know, you don’t need it. But, you know, one of the there have been several psychological studies that have shown that the impact of thyroid eye disease is actually greater than being diagnosed with breast cancer, and it impacts every aspect of your life. You can imagine going to the grocery store, being pointed out, not being able to see well, restricting, getting up a couple hours earlier so that your double vision goes away before work. So it impacts so many aspects of life, and so the first thing I tell people is, it’s okay to want to have this go be improved. My patients don’t come in looking to wanting to look like Beyonce. They just want to go back to what they looked like before, and that’s so important. It’s like and they don’t even, they’re okay with 75 percent improvement. It’s just they want to return to normalcy, and you shouldn’t feel bad about that at all.

What should someone look for in a healthcare provider for TED?

Healthcare provider for TED, um, is often an ophthalmologist or a specialized oculoplastic surgeon, and first of all, you want to get expertise. You want someone who deals with the problem, so there are some great resources online of even how to find physicians who deal with thyroid eye disease, but an oculoplastic surgeon is a good, very good start. The really most important thing is you want someone who’s going to listen to you, because a lot of times the what you’re feeling and what women feel during this disease is really much more severe than it may even appear on the outside. And you don’t want to be dismissed, because that’s what I find happens so frequently. Is it’s like, oh, it’s just a little bit of swelling versus a little bit of that, but it really interferes in all aspects of social and professional life. So the first important thing is get someone who will listen and will actually take some time and is knowledgeable. And then it’s, you know, the proper exam and then talking about both medical and surgical treatments and what you should do. But that listening phase is often what gets, uh, left out.

Do you have any other advice for women with TED?

I see a lot of patients who’ve had incredible frustration and just, you know, and so for me it’s like, you know, if you if you’re not finding answers or if you’re not finding someone who’s willing to spend time and give you answers, seek out a new physician. Um, you know, I hate to say that but sometimes you know, you know, you’ll fit better with someone else, but don’t don’t, uh, feel hopeless in the circumstance. Uh, certainly you know, definitely you know, seek alternate opinions.