Thyroid eye: "You constantly see yourself as disfigured and it's not you."
This rare but progressive and debilitating autoimmune disease affects five women for every man and is most common in people between 40 and 60 years old.
Some diseases present symptoms so common that they can be confused with other, more common and milder conditions. This is the case with thyroid eye, which may initially manifest symptoms typical of other conditions, such as redness or mild inflammation, but can eventually lead to double vision and acute vision problems. "The full extent of the disease affects 100% of the patient's work and social life," explains Dr. Sabina Luna, an ophthalmologist at Sant Pau Hospital. It is a rare but progressive and debilitating condition that affects five women for every man and is most prevalent in people between the ages of 40 and 60.
"It's an autoimmune disease, since there's a breakdown in the body's defense system, and it's directly linked to some thyroid disorder," explains Josep Maria Cubero, an endocrinologist at Sant Pau Hospital. This is what happens when the immune system makes a mistake and attacks not only external infectious agents but also the muscle and fatty tissue of the eye socket. In fact, it's estimated that 40% of patients with Graves' disease—an autoimmune thyroiditis and the most common medical cause of bulging eyes—develop this eye condition, and it also develops, to a lesser extent, in some patients with Hashimoto's thyroiditis.
One in three patients suffers a permanent or temporary disability
The disease causes inflammation of the muscles around the eye socket, a process that can last between one and a half and three years if left untreated. Among the most common symptoms are eyelid retraction, difficulty closing the eyes completely, proptosis (protruding eyes), eye redness, light sensitivity, and a persistent gritty sensation, among others. Alessia Fiorillo is a patient with thyroid eye disease and recalls that when she first experienced symptoms, she would look up and feel pain, as if her eyes were heavy. "I had a very severe headache above my left eye, light and the computer screen bothered me, and I had to wear sunglasses all day," Fiorillo explains.
These symptoms can be confused with other more common eye conditions, such as allergies or infections. Furthermore, according to Dr. Luna, "quitting smoking is recommended" for those affected, as smokers have a much higher risk of developing thyroid-related eye disorders, in addition to showing greater resistance to treatment and more severe symptoms. There is also evidence that significant stress can trigger other immune-related eye disorders.
In moderate and severe cases, which are more common in men, if the disease is not detected early and the appropriate procedure with an endocrinologist is not followed, patients can develop serious and chronic sequelae, such as alterations in the lacrimal glands—requiring lifelong artificial tears—or the inflammation and subsequent growth of the glands, causing acute eye problems. For this reason, in one out of every three cases, the patient ends up with temporary or permanent sequelae. Therefore, it is important to recognize the disease as early as possible and implement a multidisciplinary approach involving different professionals. However, Dr. Cubero recommends that treatment decisions for the same patient be made concurrently.
The work, social and emotional sphere
"Work-wise and socially, all patients struggle with it," explains the ophthalmologist at Sant Pau Hospital. "Some patients are left disfigured and require surgical treatment." "Aesthetically, you look very strange: your eyes bulge out, your gaze changes, and your face is altered," details patient Alessia Fiorillo, explaining that this affected her greatly psychologically, as it's difficult to recognize yourself. On the one hand, there are the symptoms linked to the thyroid disorder, and on the other hand, there are the ocular symptoms, such as pain, dry eyes, or double vision, which can make everyday activities like using a computer, driving, or writing difficult, creating a feeling of a lack of independence.
“Many of these people take long periods of sick leave, and those who do work do so out of necessity or desire,” Luna adds. Furthermore, in the social sphere, the physical changes can cause emotional distress for patients, leading them to avoid situations where they have to meet with others. Many think, “You look disfigured, and it’s not you,” she points out. In some cases, this situation can lead to the development of mental health disorders, such as depression or anxiety. It is for this reason that, although awareness of the disease has improved in recent years, “we must try to raise awareness of the illness among the general population,” Cubero states. Fiorillo confirms this, concluding that there is still a great deal of misinformation surrounding this autoimmune disease, and it needs to be given greater visibility.
