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Caring for people with thyroid eye disease: a healthcare professional’s experience


Madhura Tamhankar, MD, is associate professor of ophthalmology and neurology at the Hospital of the University of Pennsylvania. Here, she shares insights from her 16 years of experience of caring for people with thyroid eye disease

Caring for people with thyroid eye disease
How do you explain thyroid eye disease to patients?

The most usual way patients notice thyroid eye disease (TED) is when they notice bulging (proptosis) of their eyes, and that is very distressing for them. 

For the most part, when I tell patients about TED, they have never heard of it, so it’s one of the more difficult diagnoses to explain. The majority of patients know they have an overactive thyroid gland, but often they don’t know—and have a hard time understanding—that there is a connection between the thyroid (butterfly-shaped gland located at the front of the neck) problem and the changes they are experiencing with their eyes. The way I explain it is to say that hyperactive thyroid is an autoimmune condition and that the same antibody that is attacking their thyroid gland is also attacking their eyes. And that’s the reason for the inflammation. 

Also, when somebody has a hyperactive thyroid, they may experience a lot of anxiety because of the hormonal changes they are going through; anxiety is a huge part of these patients’ symptom burden, whether they have thyroid eye disease or not. In fact, many patients may need treatment to control this anxiety.

Patients are often scared about the health of their eyes and are worried about not only losing vision but also about the change in the appearance of their eyes. Functionally and cosmetically, thyroid eye disease can be a disabling condition.

What are the important things for patients with thyroid problems to be aware of?

I think it’s important for patients who are affected by a hyperactive thyroid to be aware that it can affect their eyes. And if they do have symptoms, they should seek care early on.

TED typically begins with signs of inflammation around the eyes that the patients can see and feel. Preceding the bulging, many patients may experience redness, tearing, dry eyes, foreign body sensation, blurry vision that comes and goes. It is important that once they are diagnosed with hyperactive thyroid, they know that it’s typically a lifelong condition which may go into remission but have flare-ups. 

Involvement of the eyes is quite serious in many people, so patients need to be aware that they must stay compliant with treatment, avoid smoking, and watch out for the eye symptoms mentioned earlier.

Caring for people with thyroid eye disease
How do you support patients with their concerns?

Patients do have a lot of concerns. When they are given their TED diagnosis, their biggest worry is usually, am I going to go blind? What’s going to happen? What can I expect? How is this going to progress? When we see a patient for the first time with TED, a lot of time is spent in explaining the trajectory of the condition, addressing the patient’s concerns, counselling on lifestyle modifications, and providing an overview of management options. Our goal is to provide patients with information that will deepen their understanding of how TED can affect their eyes and how it can be treated and/or prevented.

We formed our thyroid eye disease clinic many years ago because our patients had such complex concerns, and we felt that two eye doctors were needed to address that. Having two eye specialists, an oculoplastic specialist and neuro-ophthalmologist, in the same clinic at the same time is very unusual, but it is sometimes needed because of the very complex nature of this condition, and of the discussions we need to have with patients regarding medical and/or surgical therapies.

Caring for people with thyroid eye disease
What burden does TED have for patients?

It’s a condition that has a spectrum: from some patients that are minimally affected to patients who are very severely impacted as the condition runs its course over many years, requiring all sorts of treatments. As the condition advances, some of these patients can experience double vision, vision loss, more protrusion of their eyes, and other problems. I have seen people who—even 10 years after diagnosis and despite all therapy—are still suffering from TED.

The level of disability that the patients may experience is totally dependent upon the extent and the severity of the condition and how long they experience symptoms. In some patients, TED is self-limiting: they may have bulging of their eyes that then goes away. But then there are others whose condition worsens and who experience problems that get progressively worse.

The condition also carries with it the burden of treatment, which can span many, many years, and which varies depending on the extent and the severity of the thyroid eye disease. There’s never really a cure. People may be in remission for some time, but TED can flare up again, so medical and surgical treatments may be needed during these flare-ups. It is the hope that the newer research drugs that are being studied may help reduce the morbidity in TED and improve outcomes.

Typically, medical therapy is started when patients are in the very active stages of TED. Once they become stable, many patients will require cosmetic procedures to restore the ocular anatomy and improve the appearance of their eyes and their face. This can require many surgeries including decompression procedures, strabismus correction (strabismus is a disorder in which both eyes do not line up in the same direction) and/or eyelid procedures. 

In those patients who have bulging of their eye, surgery can be done to put the eyes back in their socket. That may involve doing what we call an orbital decompression procedure. The surgeon goes behind the eye and removes the fatty tissue in order to improve upon the bulging. This is major surgery and carries with it the risk of vision loss and worsening double vision.

A patient may have double vision if the muscles in the back of the eye are affected, and if those become enlarged a strabismus surgery is needed to restore ocular alignment. Finally eyelid procedures may be necessary to correct eyelid-related abnormalities.

Many times these patients have to undergo several eye procedures to regain their level of functioning and to restore their anatomy or appearance—which you can never restore completely. The aesthetic aspect can be truly devastating to many patients.

How important is multidisciplinary care in TED?

I’ve been in practice for many years now, and one of the things I love to see—which is not easy to do—is a collaborative multidisciplinary effort in managing this condition. We have that here at the University of Pennsylvania because we are a referral centre for complex patients, and our approach is multidisciplinary. Many of our patients are under the expert care of an endocrinologist, in addition to eye care specialists who can treat the dry eyes, a neuro-ophthalmologist for double vision and an oculoplastic specialist for treating proptosis and eyelid abnormalities.

The condition is best taken care of by specialists who specialise in either the treatment of bulging eyes or of double vision. But it’s very important that there is a multidisciplinary approach and that patients see their endocrinologist on a regular basis—they need to follow through with their therapy. It’s very important for all the professionals treating the patient to know that TED can get nasty and to work together.

Caring for people with thyroid eye disease
Is there enough awareness of TED among doctors and patients?

Many patients with early thyroid eye disease may be misdiagnosed as simply having dry eyes or ocular allergies and may not receive a correct diagnosis. It is important for eye care providers to be aware of this condition and perhaps refer the patient who presents with mild bulging of the eyes for a hormonal evaluation for thyroid function testing especially when their symptoms do not improve with dry eye therapy.

It is imperative that patients are diagnosed earlier so they can be sent to the right specialist and offered the correct treatment. Importantly too, increased awareness will mean general practitioners can explain to patients what they have, the disease process and what to expect in the trajectory of their condition.

What are some of the other unmet needs for patients?

One of the things patients will always ask is, what can I do as a patient? That’s where we have some unmet needs, in my opinion.

I feel not enough emphasis is given to the importance of healthy living. Almost every autoimmune condition can be exacerbated by poor lifestyle—an unhealthy diet, smoking, alcohol intake and lack of exercise. And in TED—and any autoimmune condition—one of the biggest risks of worsening we see is in those patients who are smokers. 

We usually counsel patients and ask them to quit smoking. But many patients have a difficult time with that and may require additional support and resources, which are sometimes available and sometimes not. So, I think that aspect especially is an unmet need, as is generally, improving patients’ understanding of the importance of health living.

Also, I think the psychological burden of the condition on patients is under-recognised (and under-studied). Living with TED makes patients anxious, and when you have that anxiety, combined with a significant burden of symptoms, these patients may really end up suffering for many years. I do think patients need extra support with this aspect of living with TED, a condition that is not fatal but may become very functionally and cosmetically disabling.

This article has been made possible with support from Viridian Therapeutics. Viridian had no editorial or copyright control over this content. Views are solely those of the contributors.

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