A healthy immune system is responsible for protecting the body against infection and diseases. But sometimes, this system malfunctions by attacking the body’s healthy tissues and cells. Individuals suffering from an abnormal immune response develop autoimmune conditions.
The National Institute of Allergy and Infectious Diseases (NIAID) recognizes over 80 autoimmune conditions to date. Some like Type I diabetes and rheumatoid arthritis are common, whereas others, like Thyroid Eye Disease (TED), are rare.
TED is a serious disorder in which hyperthyroidism begins to show ophthalmologic symptoms. The fatty tissue and muscles behind the eye become inflamed. As for its cause, researchers are still studying what factors may trigger such an immune response.
Though the causes are still unknown, TED certainly changes an individual’s life in more than one way. In this article, we will discuss what life with thyroid eye disease looks like.
Seeking Acceptance Within
Thyroid eye disease will impact a patient’s physical, mental, and emotional health. In many cases, patients even struggle financially due to expensive treatments and frequent doctor visits. Both before and after treatment, it may be challenging to find acceptance within oneself for one’s changing vitality.
General Quality of Life
TED is rightfully referred to as a debilitating autoimmune condition, aspects of which severely affect the patient’s quality of life. However, the extent of the impact depends upon the severity of the disease.
A study conducted on 100 TED patients found that this disease severely affects a person’s quality of life. The test subjects reported symptoms like blurry vision, constant pain in the affected area, and diplopia or double vision.
It was also found that patients with the lowest quality of life had a TED surgical history and facial deformity. Due to such symptoms, patients are unable to go outside their homes without assistance. Some may even find it difficult to move around the house without bumping into the wall or other objects.
Other symptoms of TED include –
- Dry eyes
- Bulging of the eyes (proptosis), which may make it difficult to shut the eyelids
- Low tolerance for bright lights
- Redness
Patients with dry eyes may feel that something has gotten into their eyes. The irritation may lead to watery eyes in some cases. Those with proptosis report feeling a dull pain behind their eyes, especially during sideways eye movements.
Proptosis also makes it difficult to blink the eyes and sleep at night. In severe cases, the optic nerve gets affected, threatening permanent vision loss if not addressed immediately.
The Social and Emotional Challenges Involved
Patients with severe TED may experience noticeable changes to their faces and eyes. One example would be the cross-eyed look due to proptosis. This makes them feel embarrassed to visit crowded places, friends and family, and social events.
The National Library of Medicine published a study that included 714 patients with moderate to severe TED. It was found that at least 36% also suffered from anxiety and depression. Interestingly, the more severe the TED symptoms, the greater the emotional and social impact of the disease.
Prolonged isolation can cause TED patients to despise their image in the mirror. Many mention that they do not even recognize who they are anymore. Even post-treatment, people may struggle to get used to looking at their reflection and clicking pictures with friends and family.
In general, TED may lead people to feel the following emotions –
- Anger
- Helplessness
- Confusion
- Extreme stress
- Anxiety
- Sadness
Treatment Side Effects
While surgery is often prescribed as a last resort for severe cases, mild to moderate TED is treated using medications. One drug that received FDA approval in 2020 for moderate to severe TED was Tepezza or Teprotumumab, a monoclonal antibody.
At the time of its launch and approval, the drug showed immense promise. Wiley Chambers, a member of the FDA’s Center for Drug Evaluation and Research assured that Tepezza could alter the course of TED. He went on to say that this drug could spare patients from multiple invasive surgeries.
Is Tepezza effective for thyroid eye disease? Yes, a 2023 study on patients with Dysthyroid Optic Neuropathy (DON), a sight-threatening TED complication, found that Tepezza improved visual acuity. Not only that but diplopia and proptosis also improved post-treatment.
However, just two years after the drug’s approval, the first-ever Tepezza lawsuit was filed in August 2022. The plaintiff complained that Tepezza had caused hearing-related problems, including a ringing sensation in the ears called tinnitus. Over the next few months, hundreds of similar lawsuits were filed against Horizon Therapeutics (the drug’s manufacturer).
This should not have been strange since the Endocrine Society published a press release in 2021 about Tepezza’s side effects. Twenty-six patients were used as test subjects, and given four infusions of the drug. Seventeen of them (65%) complained of otologic side effects like autophony, tinnitus, hearing loss, and a sensation of ear plugging. Horizon Therapeutics did conduct a post-marketing safety analysis, which stated that just 10% suffered the side effects.
According to TruLaw, the lawsuit holds Horizon Therapeutics responsible for physical injuries and the non-disclosure of Tepezza’s side effects. TED patients who received even one round of Tepezza injections and developed hearing-related complications are eligible to file a lawsuit.
Dramatic Lifestyle Adjustments
A considerable part of a TED patient’s daily schedule involves doctor visitations and getting used to dramatic lifestyle adjustments. These depend upon disease severity and individual symptoms.
Reducing Sensitivity to Light
TED patients with dry eyes report feeling a painful reaction to bright light, also known as light sensitivity. This will make them avoid entering rooms with bright ambient lighting and going out under direct sunlight. Light sensitivity requires making the following adjustments –
- Wearing caps and sunglasses that prevent direct light from falling on the face.
- Using screen covers on laptops, smartphones, and other gadgets
- Replacing bright lights with dimmer counterparts
Keeping Eyes Moist at All Times
A dry eye is a serious symptom of TED, which often leads to other issues like irritation, redness, and soreness. This symptom is more severe in patients with retracting eyelids that do not close properly.
Besides medical treatments, the following measures are needed to keep the eyes moist –
- Using a sleeping mask to keep the eyes properly covered
- Keeping the moisture levels in the room high with the help of a humidifier
- Avoiding direct airflow from vents
- Wearing eye protection equipment to prevent dust from entering the eyes
- Frequent trips to a pharmacy to purchase prescription eye drops
Care While Driving
TED patients with blurry and double vision cannot participate in driving. They may be required to disclose this issue to their respective state’s motor vehicle department and the insurance company.
Those with dry eyes may find it difficult to drive at night because the pupil dilates under low-light conditions. As a result, light scattering is more prominent, which could cause a blinding sensation and severe pain.
Even in the morning hours, it is best if the patient is accompanied by a caregiver or friend while driving. Moreover, wearing sunglasses or using tinted glass is important for those with light sensitivity.
Adjustments Needed for Reading
Patients with blurry and double vision will not be able to read and may have to use audiobooks instead. Even those with other symptoms like dry eyes and swelling may find the words to be blurry. Such patients are advised to read not more than 30 minutes at a time.
Other adjustments in this area include –
- Adjusting screen brightness
- Increasing the font size
- Using virtual assistants like Alexa and Siri
- Using smartphone apps like text-to-speech
The Slow Road to Recovery
Being an autoimmune condition, TED is incurable, but the symptoms can be controlled to ensure patients enjoy a normal life. In most cases, the disorder resigns into a passive phase where symptoms have stabilized or slowed down.
A woman named Roxann Kranstover had undergone TED treatments for three years, after which the disease entered its inactive phase. Though she did not have to constantly monitor her eyes, Roxann still had to keep sunglasses and painkillers handy.
The road to recovery is often a slow and painful one, but researchers are looking for a definite cure. Till then, patients simply need to learn to live with the new normal.