Dr Nijm: Dr Valitutto, it’s so nice to be here with you today. We’re going to talk about Thyroid Eye Disease, or TED. A disease that’s often misunderstood as just a cosmetic issue, but we know that the impact extends far beyond the eyes. How would you explain TED to someone who is unfamiliar with it?

Dr Valitutto: TED is a progressive autoimmune disease, often associated with proptosis, bulging of the eyes. However, TED patients experience a wide range of visible and nonvisible signs and symptoms that can all have a significant impact. But it’s not just about the clinical effect on the eyes. So as clinicians, we often focus on aspects of TED we can see. However, it’s crucial that we also ask our patients how TED is impacting their overall well-being.

Dr Nijm: Dr Valitutto, I couldn’t agree more. The conversations like this are so important to shed light on the wide-ranging effects of TED on a patient’s daily life. As an ophthalmologist, understanding what’s going on beyond the eye starts first with understanding what’s going on behind the eye. Autoantibodies activate the IGF-1R TSHR signaling complex that stimulates orbital fibroblasts and triggers inflammation and causes an immune cascade that really leads to all of that range of signs and symptoms that patients experience.

Dr Nijm: And this can be problematic since we know that MRIs show damage can occur before visible signs appear. And for patients with these subtle symptoms, MRIs can be the key to an earlier diagnosis and more proactive management.

Dr Valitutto: Exactly. The connection with Graves’ disease often complicates things, so it’s crucial to recognize that while TED and Graves’ disease frequently coexist, they’re distinct conditions requiring separate treatments.

Dr Nijm: Have you found this distinction is well understood?

Dr Valitutto: Well, not always. Up to 90% of TED patients have a thyroid condition, which has resulted in a lingering misconception that if we treat the thyroid, we treat the Thyroid Eye Disease. But we know that even patients who have had their thyroids removed can still suffer and experience flares.

Dr Nijm: It’s so important to screen all thyroid patients regularly, especially given the emotional burden of TED. I’ve had patients tell me how their self-esteem was affected, and some patients even stopped driving entirely because of their vision issues. Have you seen patients that had similar stories?

Dr Valitutto: Absolutely. I’ve met patients who felt isolated, hid behind sunglasses, struggled to maintain their workload due to vision issues. These are the stories that remind us why early intervention matters.

Dr Nijm: The collaboration between endocrinologists and eye specialists is really crucial for managing this disease. It is this comprehensive care that occurs only when specialists talk to each other and work together that delivers the best kind of care for our patients.

Dr Valitutto: Following the ATA 2022 Consensus Statement to screen all thyroid patients, like those with Graves’ disease, for TED at each visit is key to early identification. TED often presents with subtle, nonvisible symptoms, so routine screening allows for earlier intervention that can help improve outcomes and reduce disease impact.

Case courtesy of Roberto Schubert, Radiopaedia.org, rID: 13874

Dr Valitutto: In our first session together, we focused on the autoimmune, progressive nature of Thyroid Eye Disease. Now, we’ll see how patients live with the effects to really drive home the importance of recognizing and addressing both the visible and the nonvisible signs and symptoms.

Dr Nijm: Understanding the full impact of TED means going beyond the medical facts—it’s really important to ask questions about patient experiences. These stories can give us a clear picture of how deeply Thyroid Eye Disease affects their daily activities.

Patient: And I didn’t know what it was. It was itchy, gritty, tear-running all the time. I would make a conscious decision to not drive because I couldn’t see. So I had to depend on friends to take me to the grocery store, take me to the dentist, the doctors. And that is, you know when you’re used to getting and doing stuff for yourself, and all of a sudden, you can’t do it anymore. It’s a scary scary, you know, thing to happen to anyone.

Dr Nijm: I often see patients facing challenges with activities like, reading or driving, that are essential to daily living. These limitations often lead to a greater dependence on others, which can negatively impact self-confidence.

Dr Valitutto: Exactly. When patients lose their independence, it can disrupt their routines or their daily functioning in ways that really may not be obvious. Patients don’t always know how to express this, so they may not share these details with us. That’s why it’s crucial for us to ask the right questions.

Patient: I never went out, wouldn’t let nobody see me because I didn’t want to see myself.

Dr Nijm: The impact on self-esteem is often underestimated, and many patients hesitate to bring it up. That’s why I ask my patients, specifically, not only about their physical symptoms, but also about their ability to manage daily activities.

Patient: I would say to my physician, ask more questions, don’t just look at a chart that you’ve gotten. It was never a conversation piece between the doctor and myself. In my head I’m like, I couldn’t see, I guess he knew that I’m not doing anything. But when you’re stuck, you just didn’t bother to mention stuff like that.

Dr Nijm: As TED progresses, the limitations on activities of daily living and the emotional toll become even more apparent. Patients frequently describe feelings of isolation or negative self-image—especially as their appearance continues to change.

Dr Valitutto: And it’s not just in severe cases. Patients feel the burden of TED regardless of disease activity or duration. In one study, 71% of patients with lower disease activity felt their self-confidence had been negatively impacted.

Dr Nijm: Some patients may feel shame around the disease or might not want to bring it up. They don’t want to appear weak. It’s not always easy to talk about these things or for patients to bring it up. They want us to ask about their daily burden. Things like difficulty driving, reading, or working, but we often focus solely on those visible improvements, which may or may not even be important to the patient. When symptoms are well-managed, patients may rediscover their independence and return to doing more of what they love.

Dr Nijm: The ATA 2022 Consensus Statement recommends assessing both the physical and psychosocial impact for all TED patients. By evaluating the full scope of the disease, we can intervene sooner, providing better support and treatment that can help improve both activities of daily life and clinical outcomes.

Dr Valitutto: In our earlier discussions, we covered the autoimmune nature of Thyroid Eye Disease. Now, let’s look at how this can present differently in patients. Sometimes, signs and symptoms are striking; other times, they’re subtle and easy to miss.

Dr Nijm: This is an example of a more obvious case of TED. The visible external signs—like proptosis—immediately suggest Thyroid Eye Disease. These patients are often easier to identify.

Dr Valitutto: We need to be particularly mindful of the less obvious cases of TED. They’re more likely to fly under the radar, with signs and symptoms that could be mistaken for other conditions, like allergies or dry eye disease. When you see a patient like this walking into your office, TED isn’t always the first thing that comes to mind, is it?

Dr Nijm: No, it’s not. When you look at this photo, the symptoms might seem mild at first. There are noticeable soft tissue changes around the eye, some redness. He’s also reported nonvisible symptoms, like grittiness, blurry vision, light sensitivity. These signs and symptoms are easy to attribute to a more common condition like dry eye disease. But when you hear them mention discomfort in bright light or even trouble driving, that’s a signal that you have to investigate further.

Dr Valitutto: And in this case, he’s probably been experiencing symptoms for a couple of years, certainly long enough for it to impact his day-to-day life, but maybe not severe enough to raise alarm bells.

Dr Nijm: Exactly. It often takes asking those right questions to uncover the full story of these patients.

Dr Valitutto: And so catching it early certainly can make all the difference. These patients deserve to have their concerns taken seriously, even when the signs are subtle. How about this patient? Non-classic symptoms. TED might not be the first thing you think of either.

Dr Nijm: Her symptoms are also subtle. There’s some proptosis and chemosis, and she has a documented history of diplopia and pressure behind the eyes. Those signs and symptoms could be mistaken for other conditions. That’s where listening to the patient’s story becomes so important. Limitations to daily activities along with signs and symptoms could indicate a need to screen for TED.

Dr Valitutto: It’s those less obvious cases that require us to dig deeper. And it’s common for TED patients to have other autoimmune disorders, like Hashimoto’s disease or even hypothyroidism. Visible signs, like mild inflammation, watery eyes, chemosis, may seem subtle, but are still quite significant, which is why a full thyroid workup is an essential part of diagnosing TED. However, 10% of TED patients do not have a thyroid condition, which is why it’s so important to pay attention to the disease burden.

Dr Nijm: Exactly. Looking at nonvisible symptoms like orbital pain, dryness, or light sensitivity can greatly impact a patient’s daily life. This MRI shows how even patients with a more subtle presentation can experience underlying effects. If you take a look here, we see mild enlargement and inflammation of the superior and inferior recti muscles. To get a sense of how this manifests in her life, I’d ask this patient if she has had to adjust her daily activities, like driving or working.

Dr Valitutto: These conversations don’t need to be overly time-consuming, but they are key to understanding the full impact of TED physically, emotionally, and socially.

Dr Nijm: Collaboration in this vein is vital. Partnering with endocrinologists for thyroid management and ophthalmologists for comprehensive eye exams ensures holistic care.

Dr Valitutto: It also gives us the best chance of identifying and helping TED patients with varying levels of severity. As we’ve seen, TED can have a debilitating impact regardless of the disease activity or duration.

Dr Nijm: That’s why education and resources are so important and go hand in hand. Together, we can empower patients to get back to doing more of what they love. TEDImpact.com is a great resource to help physicians identify and manage TED, offering tools like the TED Patient Intake Form, an interactive patient identification tool, treatment guidelines, and more.