PSYCHOLOGICAL IMPACT OF
THYROID EYE DISEASE (TED)

The burden of TED runs deeper than you may think

Image of Rick, a real patient, talking about the burden of Thyroid Eye Disease

“TED was making my eyes bulge and sag, and puff out. Most of that I was okay with and thought I’d just be able to put up with it. But the double vision, blurry eyes, and never-ending tearing were unacceptable.”

—Rick, a TED patient

TED can be associated with significant psychological and emotional effects, including feelings of isolation, anxiety, or depression^1,2

Mild symptoms of TED are often misdiagnosed and can lead to significant delays in treatment of TED³
Symptoms of TED extend beyond functional issues, and the psychosocial impact associated with the disease can affect many aspects of patient well-being^1,3
Symptoms of TED can negatively impact employment, relationships, and self-confidence, which frequently lead to patients withdrawing from social interactions^1,4

“I fell into a depression. It was never something I wanted to admit, but I started withdrawing and isolating myself. I became paranoid. No matter what I did, my eyes continued to change.” —Sally, a TED patient

Preview image of a video where Olympic gold medalist, Gail Devers, and TED Specialist, Dr Gary Lelli, discuss the negative impact of treating TED as a watch and wait disease

Three-time Olympic gold medalist, Gail Devers, and TED Specialist, Dr Gary Lelli, discuss the negative impact of treating TED as a "watch and wait" disease.

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Dr. Lelli: Hi, my name is Gary Lelli. I am an oculoplastic specialist at Weill Cornell Medical Center in New York City. I’m really excited to be here today to talk about Thyroid Eye Disease, and Graves’ disease, really go through some of the physical things that can happen with the disease but also the emotional sequelae that occurs, and the best part is we have a three-time gold medalist, the real Gail Devers here to join us, who’s sadly struggled with both Graves’ disease and Thyroid Eye Disease for the past 30 years. Including the difficulties of actually making the diagnosis, the emotional strain it took, the physical difficulties even during her professional running career. So, without further ado, let me welcome Gail to the show.

Gail: Thank you, Dr. Lelli. And yes, I am Gail Devers and I’m excited to be here and to be a part of this. I’m looking forward to discussing more excited to talk about T.E.D., or I call him TED – he needs a name because he’s got to go, and it’s a disease I know all too well and I just want to do my part to help people get the answers that they need.

Dr. Lelli: I know you’ve struggled with both Graves’ disease and Thyroid Eye Disease. Can you just walk us through that journey that you had?

Gail: I’ll take you back to 1988. Where I was in college, I had just broken the record in the 100m hurdles and was well on my way to what they say primed to do well at the Seoul Olympic Games that summer, and I say the bottom fell out to be honest. I was having some issues as far as weight loss - extreme weight loss from 79 to 82 pounds, hair loss, dry hair, brittle nails. My nails broke. I couldn’t figure out what was going on.

Dr. Lelli: Those are the Graves’ probably, right?

Gail: This is my Graves’ disease. It took two and a half years for me to get a diagnosis. Constantly fatigued, my eyes didn’t close when I slept, and I didn’t know what was going on. I go to the doctors. Two and a half years later, I get a diagnosis of Graves’ disease. I’m like, “Okay, I’m getting my life back on track,” or so I thought. Now, fast forward 30 years, I’m still having eye symptoms, from the dryness to the grittiness, redness, constantly, where I’ve got all kinds of drops, I’m wearing glasses, I can’t drive at nighttime and didn’t find out until, like I said, 30 years later that I have something called Thyroid Eye Disease and then finding out that the statistics of if you have Graves’ disease, 50% of those people may develop Thyroid Eye Disease. I just wish I knew sooner.

Dr. Lelli: Yes, it’s important for everyone to know that they’re two separate diseases. They require two separate specialists, endocrinologists for the Graves’ component - oculoplastics, neuro-ophthalmologists for the Thyroid Eye Disease or TED component. The thing that also is really important to know is that TED is a progressive problem. You dealt with it for 30 years. Obviously, we don’t want people to go that long for a diagnosis. The disease tends to get worse over a period of a few years and causes all these tell-tale signs of proptosis and diplopia.

The thing that is really important is that even mild symptoms can be affecting a patient in a really more profound way. Especially when they are being told by multiple people that it’s just dry eyes, it’s just allergies. So the signs can be quite subtle and what I would say to our healthcare providers, our ophthalmologists, our optometrists, is if you have a patient who has a thyroid imbalance, Graves’ disease, even low thyroid, hypothyroidism – all these types of patients can develop Thyroid Eye Disease. Make sure they’re screened for the standard signs and symptoms. We all know what they are. Proptosis, eyelid retraction, dry eyes, foreign body sensation, irritation, discomfort, diplopia.

These are the things we are looking for and if you even see the most subtle signs, get the patient to a specialist just for a baseline exam. So the specialists we all know are oculoplastic surgeons or neuro-ophthalmologists. Get them plugged in and we really like to try do that, especially at our institution, it’s almost a trigger the same way we think of diabetes, you need to get you retina checked. Thyroid disease, Graves’ disease, you need to see an oculoplastic surgeon or a neuro-ophthalmologist, or a general ophthalmologist or optometrist who can just look for those signs and symptoms.

Dr. Lelli: Gail, you’ve talked a lot about the physical struggles you had, and the difficulties with your Thyroid Eye Disease, but many patients, almost half have mental anguish from the disease. Can you talk about the emotional toll it took?

Gail: Wow. Yes. Emotionally, like you said, it takes a toll. I remember I stopped going out. I didn’t like looking at the way I looked at myself and didn’t like that reflection looking back at me, so I covered my mirrors, and I didn’t look at myself anymore. Then I stopped going out of the house, because I remember probably, the last time I went out, I was at a park, and there was a child who asked his mommy, “Mommy, what’s wrong with her? She looks like a monster.” I’m like, “If I’m scaring kids, I can’t do this anymore.” I literally stopped going out. I just felt like just in general, the walls were closing in. I don’t have any answers. The hardest part about the disease is not the disease itself, it’s the not knowing. It’s the having no answers, knowing and feeling in your heart that there’s something wrong that I’m not supposed to feel like this, but nobody’s giving me an answer, so I don’t know what to do.

Gail: It’s like being put in a box, and then somebody sitting on top of that box and inviting all their friends to sit on top of that box, and not let you out. That’s where I was for a very long time.

Dr. Lelli: It’s sad, you’re not alone. We have stats on this, and 60% of patients with a TED diagnosis have a psychosocial issue from the diagnosis. About half of the patients suffer from a lack of self-confidence, and that makes sense. Imagine over a period of weeks to months, and drastic change in the way you appear to other people. About 42% of patients suffer from anxiety or depression with a TED diagnosis. We’ve got the stats on this, and sadly it’s at least half that are struggling.

Gail: What would you tell your care providers? What questions should they be asking patients who may come into their office and have subtle changes or subtle things? How would you have them ask other questions to lead the conversation?

Dr. Lelli: Yes, it’s a great question. Especially one pertinent to our ophthalmologists and our optometrists, our frontline eye care providers. Because the signs can often be really subtle and easy to miss, even for a trained eye. Ask your patients if they have a history of Graves’ disease, if they have a history of a thyroid imbalance. Ask them if their eyes are uncomfortable. Do they have a dull ache or pain when they move their eyes? That one’s quite common but easy to miss. Ask them if they’ve noticed a change in the appearance of their eyes.

Are the eyes red or irritated? Have the eyes been bulging? Do they see two images instead of one? I would say if you have a patient with a diagnosis of Graves’ disease, and even remotely get a hint of a yes to any of those questions or a subtle sign, like an eyelid retraction, or the most common sign of the disease, get the patients over to an oculoplastic surgeon or a neuro-ophthalmologist. Those are the real TED experts. They can have a good baseline on the patients.

Remember that it’s a team-based approach. We’ve talked about it a million times, that Graves’ and Thyroid Eye Disease are separate disease processes, but we need endocrinologists for the Graves’. We need our TED experts for the TED, and oftentimes, we need psychosocial assistance. We may need surgeons. We may need radiologists to help us review imaging. It’s a multi-specialty—

Gail: It’s like a relay team.

Dr. Lelli: Exactly.

Gail: It’s like a relay team. I get it. The questions. I wish that somebody would have asked me those questions or prompted me with those questions because 30 years would have been a sprint.

Dr. Lelli: Yes, we could have gotten it down from 30, I'm sure.

Gail: Dr. Lelli, I have to say, thank you so much, first of all, for allowing me to be here and be a part of this, but then also for your words and advice that you gave to your colleagues of what questions to ask those patients, that it's going to make an impact. I think sometimes we think that it's something small but that small question is having a big impact on the patients and the changes that it will make in their lives.

Dr. Lelli: Yes, Gail, I can't thank you enough. Telling your story has been huge for everyone to hear. You're not just a gold medal athlete, you're a gold medal patient advocate. I always say that this is a team problem and one that we need to focus as the center of the team, the patient, to get that diagnosis to get it much quicker than 30 years. There's a resource for all of us. It's www.tedimpact.com, tedimpact.com. I hope next time we get together that we are talking about all the major positive improvements we’ve had in making diagnoses for TED and maybe something fun at the same time.

Gail: Oh yea, we are going to talk on what an impact we’ve had on TED.

EMOTIONALLY… IT TAKES A TOLL. I DIDN’T LIKE LOOKING AT THE WAY I LOOKED…AND I DIDN’T LIKE THAT REFLECTION LOOKING BACK AT ME, SO I COVERED MY MIRRORS, AND I DIDN’T LOOK AT MYSELF ANYMORE.

—GAIL DEVERS

HOW IS TED AFFECTING YOUR PATIENTS’ QUALITY OF LIFE?

Get a clear picture of the burden of TED and how it could be impacting your patients’ lives. Ask them about their:

Ability to perform daily activities (do they have trouble driving, reading, caring for loved ones, or doing their job?)
Perception of their appearance and self-confidence (do they avoid being in pictures or attending social events?)
Emotional well-being (are they feeling depressed and/or anxious?)

To help patients and caregivers manage TED and improve their journey, download the TED Life Management Guidebook. Download now >

66%

OF PATIENTS SUFFERED A HIGH IMPACT ON DAILY LIFE^5*

42%

OF PATIENTS WITH TED EXPERIENCED
ANXIETY AND/OR DEPRESSION^6†

36%

OF PATIENTS REPORTED
MENTAL HEALTH ISSUES^5*

*Based on a retrospective chart review of 714 US patients by assessing physician-perceived impact of moderate to severe TED on patients’ quality of life (QOL). High overall QOL impact score ≥4/7, where 1 meant “not at all impaired” and 7 meant “extremely impaired.”⁵

^†Based on an online QOL assessment survey of 100 patients including all levels of TED severity.⁶

Image of LaQuilla, a real patient, discussing the emotional side of Thyroid Eye Disease

“I never went out; I wouldn’t let anybody see me. I covered all the mirrors in the house because I didn’t want to see myself.” —LaQuilla, a TED patient

Signs and symptoms of TED may not always be visible. It’s important to ask your patients if they have had or are experiencing any new or worsening manifestations of TED, and how TED symptoms may be impacting their daily lives^5,7-9

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REFERENCES:

Kahaly GJ, Petrak F, Hardt J, Pitz S, Egle UT. Psychosocial morbidity of Graves’ orbitopathy. Clin Endocrin (Oxf). 2005;63(4):395-402.
Estcourt S, Vaidya B, Quinn A, Shepherd M. The impact of Thyroid Eye Disease upon patients’ wellbeing: a qualitative analysis. Clin Endocrin (Oxf). 2008;68(4):635-639.
Estcourt S, Hickey J, Perros P, Dayan C, Vaidya B. The patient experience of services for Thyroid Eye Disease in the United Kingdom: results of a nationwide survey. Eur J Endocrinol. 2009;161(3):483-487.
Terwee C, Wakelkamp I, Tan S, Dekker F, Prummel MF, Wiersinga W. Long-term effects of Graves’ ophthalmopathy on health-related quality of life. Eur J Endocrinol. 2002;146(6):751-757.
Wang Y, Padnick-Silver L, Francis-Sedlak M, Holt RJ, Foley C, Douglas RS. Inflammatory and noninflammatory Thyroid Eye Disease: comparison of disease signs, symptoms, and quality of life in patients in the United States. Endocrin Pract. 2022;28(9):842-846.
Cockerham KP, Padnick-Silver L, Stuertz N, Francis-Sedlak L, Holt RJ. Quality of life in patients with chronic Thyroid Eye Disease in the United States. Ophthalmol Ther. 2021;10(4):975-987.
Barrio-Barrio J, Sabater AL, Bonet-Farriol E, Velázquez-Villoria Á, Galofré JC. Graves’ ophthalmopathy: VISA versus EUGOGO classification, assessment, and management. J Ophthalmol. 2015;2015:249125.
Bahn RS. Graves’ ophthalmopathy. N Engl J Med. 2010;362(8):726-738.
Thyroid Eye Disease. National Organization for Rare Disorders. 2020. Accessed December 8, 2022. https://rarediseases.org/rare-diseases/thyroid-eye-disease

PSYCHOLOGICAL IMPACT OF THYROID EYE DISEASE (TED)