Patient Resources – FAQ

The thyroid gland controls many of your body’s metabolic processes. So, dysfunction of the thyroid gland can present with a myriad of symptoms that may appear to be nonspecific. Often, the constellation of thyroid symptoms depend on whether your thyroid is underactive, or hypothyroid, vs. overactive, or hyperthyroid. 

Some signs of hypothyroidism (too little thyroid hormone produced)

• Fatigue
• Weight gain
• Cold insensitivity
• Dry skin
• Constipation
• Depression
• Enlarged thyroid gland (goiter)
• Bradycardia (slow heart rate)
• Dry, thinning hair
• Puffy face
• Changes in menstrual pattern

The above symptoms may appear in women also. Of note, menstrual changes may occur in both hyper and hypothyroidism.

Symptoms of thyroid eye disease (TED) include:

• Eye bulging
• Eyelids that are open wider, creating a staring appearance 
• Redness and swelling of the eyelids
• Redness and swelling of the eye
• Dry eye, eye irritation
• Double vision
• Eye pain, or pain around or behind the eyes
• Rarely, vision changes and/or vision loss

If you are experiencing any of the above symptoms, it is important that you see an eye specialist who can help diagnose whether you have thyroid eye disease. In some cases, TED presents before any thyroid dysfunction, so early and accurate diagnosis is key so that treatment can be initiated as indicated. 

There are different types of treatment for thyroid eye disease including supportive care for very mild cases, to medical management and surgery. Cost will depend on the type of treatment that is indicated for you. Often, insurance companies will cover the majority of the cost of treatment for a treatment that is medically necessary, so the out of pocket expense for patients can be minimized significantly.

If a treatment is medically necessary and indicated, it is often covered by insurance. However, all insurance plans are different so contact an insurance specialist if you have specific questions!

Droopy eyelids are not a classic sign of hypothyroidism. In fact, the most common finding in TED is the opposite – eyelids that are open too wide (eyelid retraction). In TED, the eyelids can become swollen and may appear to be ‘droopy’.

The mot common cause of watery eyes is tearing. Tearing can be caused by a number of different things such as reduced tear production, or increased evaporation due to an unstable tear film or eyelids that do not close completely. Patients with both hypothyroidism and hyperthyroidism may have dry eye signs and symptoms. 

Graves eye disease is also known as Graves’ ophthalmopathy (TO), and commonly interchanged with thyroid eye disease (TED) or thyroid ophthalmopathy (TO). It is when eye changes (as described in the symptoms of TED) occur in patients who often have underlying thyroid dysfunction, most commonly Graves’ Disease. 

Graves eye disease and thyroid eye disease are used interchangeably. While TED occurs most commonly in patients with underlying Graves’ disease, it can also occur in patients who are euthyroid or hypothyroid, and therefore is a more comprehensive term for the eye findings that can accompany thyroid dysfunction.

Until 2020, there was no known cure for TED. However, in 2020 the FDA approved Tepezza, which is the first and only FDA approved treatment for TED. 

For patients who are treated with Tepezza, treatment usually consists of 8 intravenous infusions, each 3 weeks apart. Therefore, treatment is typically performed over 24 weeks. Some patients may elect or need surgical refinement after Tepezza, and this would take a few additional weeks of recovery time.

Treatment options are varied and will depend on each individuals presentation and disease severity. Generally speaking, the following options are available:

1. Supportive care – use of artificial tears and gels to help with dry eye and irritation. In some cases, patients may tape their lids closed at night to prevent their eyes drying out. 
2. Medical management – as previously mentioned, Tepezza is the only FDA approved medical treatment for TED. In some specific situations, other treatments may be indicated such as systemic corticosteroids, though they do not reverse or alter the course of the disease. 
3. Surgery – since the introduction of Tepezza, the need for surgery for TED has reduced dramatically. However, it may still be indicated for refining appearance, or for helping with patients who have refractory eye bulging or double vision after treatment. In rare cases (<5%), urgent surgery may be indicated if there is vision loss from active severe TED.

While we don’t know if your eyes will get worse without treatment, it is rare for the eyes to improve spontaneously. We know that the disease follows two phases: an active phase where there is ongoing inflammation and change. Day to day, you may notice that you have some variability in swelling, eye bulging, and possibly in double vision. The active phase lasts about a year and a half, on average. Once you reach the stable phase, your symptoms of inflammation and ongoing change may subside, however the disease does not reverse. Historically, there have been no treatments that have been able to alter this natural history. However, Tepezza has been shown to be able to reverse the disease process by reversing eye bulging, and improving clinical activity.

Benefits of thyroid eye treatment include amelioration of symptoms. For example, use of artificial tears can help with dry eye symptoms and feeling of eye irritation and grittiness. 

Tepezza has been shown to reverse eye bulging, reduce clinical activity, and to improve double vision and quality of life. In many cases, surgery can be avoided following treatment with Tepezza. Anecdotally, patients have often report a significant improvement in dry eye, tearing, and eye pain/ache following Tepezza use, in addition to the published benefits.

We know that in many cases, elevated levels of circulating antibodies to the thyroid gland receptors can cause eye disease. The exact pathophysiologic mechanisms are still being elucidated, but research has shown that the Insulin-like growth factor receptor 1 (IFG-1R) on cells around the eye pay a key role in potentiating the eye disease. Tepezza, an IGF-1R antibody, was investigated as a potential therapeutic option for TED given the importance of this pathway in the disease process.