Unmasking Thyroid Eye Disease: Your Guide

Imagine looking in the mirror one morning and something just… feels off. Your eyes, maybe they look a bit more prominent, or perhaps they’re constantly irritated, feeling gritty like there’s sand in them. It’s unsettling, right? You might even notice a change in how you see things. I’ve had patients describe this exact feeling, that dawning realization that something isn’t quite right with their eyes. This experience, this subtle but persistent change, can often be the first hint of something called Thyroid Eye Disease.

So, What Exactly is Thyroid Eye Disease?

Thyroid Eye Disease, or TED for short, is a bit of a peculiar one. It’s what we call an autoimmune condition. Basically, your body’s defense system, the immune system, gets a bit confused. Instead of just fighting off infections, it mistakenly starts to attack the healthy tissues around your eyes and, often, your thyroid gland too. You might hear doctors use other terms like thyroid ophthalmopathy or thyroid orbitopathy – they all point to the same eye involvement.

You might have heard it called Graves’ Eye Disease, and that’s because it very commonly shows up in folks who have Graves’ disease – an autoimmune issue that makes the thyroid gland overactive (hyperthyroidism). But, and this is where it gets tricky, you can sometimes get TED even if your thyroid seems to be working normally, or with other thyroid conditions like Hashimoto’s disease (which usually causes an underactive thyroid).

Think of it like this: your immune system sends out these little messengers – antibodies – that are meant to target certain spots on cells. These spots, or receptors, are mostly in your thyroid, but surprise! Some are also hiding in the tissues behind your eyes, like the muscles and fat. So, the same misguided attack can affect both your thyroid and your eyes.

The good news, if you can call it that, is that while autoimmune conditions are usually lifelong companions, TED often goes through phases. There’s an “active” phase, where the inflammation is really kicking in. This can last for a couple of years, sometimes more, with symptoms that might come and go. Then, things usually calm down into an inactive, or stable, phase. For most people, TED is mild. But if it’s severe, well, it can leave its mark.

What Might You Notice? Signs of Thyroid Eye Disease

When TED is stirring, your eyes can send out quite a few signals. It’s not always the same for everyone, and sometimes it’s just one eye acting up, though usually it’s both. You might experience:

• Bulging eyes: This is called proptosis, and it can make your eyes look more prominent or “starey.”
• Gritty, irritated feeling: Like there’s something constantly in your eye.
• Swollen, puffy eyelids: Medically, we might call this blepharitis if it’s inflammation specifically at the eyelid edges, but general puffiness is common.
• Dry eyes or, confusingly, very watery eyes: Your tear production can go a bit haywire.
• Blinking a lot more than usual.
• Sensitivity to light: Bright lights might suddenly feel very uncomfortable (photophobia).
• Achy eyes or headaches: Especially a feeling of pressure or pain behind or around the eyes.
• Trouble moving your eyes: Like they feel “stuck” or don’t move together smoothly.
• Double vision: Seeing two of things (diplopia). This can be really disorienting, especially when looking in certain directions.

Now, we hope that once the active phase settles, these symptoms improve. And often they do! But sometimes, scarring can happen in those tissues behind the eye. This means they don’t quite go back to how they were.

Lasting changes can sometimes affect your appearance:

• Eyelids pulling back (eyelid retraction): Making more of the white of your eye visible, giving a surprised look.
• Eyes still looking a bit prominent.
• Bags under the eyes.
• Persistent redness.

And, more concerningly, your vision:

• Ongoing blurry vision.
• Double vision that doesn’t go away.
• In rare, severe cases, significant vision loss if the optic nerve (the nerve connecting your eye to your brain) gets compressed. This is why we take TED seriously.

Who’s More Likely to Get TED?

While anyone can develop Thyroid Eye Disease, some things can make it more likely. We see it more often in:

• Women: Ladies, you’re about five times more likely to get Graves’ and TED. Though, when men do get it, it often tends to be a bit more severe. Funny how these things work, isn’t it?
• People with thyroid hormone levels that are too high or too low: Keeping those levels balanced is key. Abnormal levels can sometimes worsen TED.
• Those who’ve had radioiodine therapy (RAI): This is a common treatment for an overactive thyroid. It’s effective for the thyroid, but sometimes it can stir up or worsen TED, especially if you’re a smoker. It’s something we always discuss carefully.
• Smokers: This is a big one. Smoking, even being around secondhand smoke, really cranks up your risk of developing TED and makes it more likely to be severe and last longer. If there’s one thing you can do to help yourself, it’s to quit smoking. I know it’s tough, but it makes a huge difference.

How Do We Figure Out If It’s Thyroid Eye Disease?

If you come to me, or see an eye specialist (an ophthalmologist), with these kinds of eye concerns, the first step is a good look at your eyes and eyelids. A thorough eye exam, checking your vision, eye movements, and measuring any bulging, can tell us a lot.

If Thyroid Eye Disease is on our minds, we’ll almost certainly want to check your thyroid. This usually means:

• Blood tests: To see what your thyroid hormone levels are doing (like TSH, T3, T4), and to look for those specific thyroid antibodies (like TRAb or TSI) I mentioned earlier.

Sometimes, we might need a closer look at the tissues around your eyes. For that, we could suggest:

• An ultrasound of the eyes.
• A CT scan (Computed Tomography).
• An MRI (Magnetic Resonance Imaging).

These imaging tests give us detailed pictures of the eye muscles and other structures.

Okay, So What Can We Do About It? Treating TED

Treatment really depends on where you are with the disease – is it in that active, inflamed phase, or has it calmed down? And how much is it bothering you? The goal is to preserve your sight and improve your quality of life.

While TED is active, a lot of what we do is about making you comfortable and managing those symptoms. This might include:

• Eye drops: Simple artificial tears for dryness, or other types for redness or pain.
• Selenium supplements: Some studies suggest selenium can be helpful, especially in mild TED. We can discuss if this is right for you.
• Scleral lenses: These are like large, custom-fitted contact lenses that vault over the cornea. They can protect the eye surface from dryness and irritation, and sometimes even improve vision.
• Vision aids: If double vision is a problem, a simple eye patch worn over one eye, or special eyeglasses with prisms (which bend light), can help your brain merge the images.
• Medications for your thyroid (if needed): If you have hyperthyroidism (like with Graves’), we’ll use antithyroid drugs like methimazole or propylthiouracil to get those hormone levels back to normal. Managing the underlying thyroid condition is important.
• Corticosteroids: For more moderate to severe inflammation, a course of steroids (often given intravenously, through an IV drip, like methylprednisolone, or sometimes by mouth) can help calm things down quickly. We use these carefully, though, due to potential side effects.
• Teprotumumab (brand name Tepezza®): This is a newer medication, a biologic, specifically approved to treat TED. It’s given by IV infusion and works by targeting one of the receptors involved in the inflammation and tissue expansion. It’s quite a step forward for moderate to severe active TED, and more like it are being developed, which is great news.
• Radiation therapy: In some cases of active TED, especially if there’s significant eye muscle involvement causing double vision or optic nerve issues, low-dose orbital radiation therapy might be considered. This aims to reduce inflammation and swelling by targeting those overactive immune cells behind the eyes. This is usually something an eye doctor and a radiation specialist (a radiation oncologist) would discuss with you.

Now, sometimes, even with all that, things don’t settle perfectly, or the active phase might be very severe. Rarely, surgery might be needed even during the active phase, especially if your vision is threatened. But mostly, we wait until things have stabilized – usually 6 months or more after the active phase ends – to consider surgery. It’s easier then to see what changes are likely to stick around.

Surgical options, if needed after the active phase, might include:

1. Orbital decompression surgery: If there’s too much pressure on your optic nerve, or to help with significant, persistent eye bulging (proptosis), a surgeon can remove a bit of bone from the eye socket (orbit) and/or some orbital fat to make more space.
2. Thyroidectomy: If your thyroid is very overactive and medications aren’t controlling it, or for other reasons, removing the thyroid gland might be part of the overall management plan.
3. Eyelid surgery (like blepharoplasty or eyelid retraction repair): To correct eyelids that have pulled back too far (eyelid retraction) or to remove excess skin and fat. This can help with comfort, protect your eyes from exposure, and improve appearance.
4. Eye muscle surgery (strabismus surgery): If scarring has affected your eye muscles, causing persistent double vision (diplopia) or limiting eye movement, surgery can help realign them.
5. Oculoplastic surgery: This is specialized surgery to adjust the soft tissues and/or bones around the eyes for cosmetic reasons, like persistent bulging or bags around your eyes.
6. Corneal transplant: In very rare cases where the cornea (the clear front part of your eye) gets badly damaged from severe exposure during the active phase of TED, a transplant might be considered to improve your vision.

We’ll discuss all options thoroughly, making sure you understand what’s involved for you.

A Quick Word on Urgent Symptoms

It’s really important to keep us in the loop if you have Thyroid Eye Disease and things seem to be getting worse, or if your vision changes. Some changes need quick attention. So, please call your doctor or eye specialist right away if you notice:

• Your vision suddenly seems to be closing in, or you can’t see as much to the sides (loss of peripheral vision).
• Colors look different, dull, or washed out.
• You get sudden, really bad eye pain.
• A rapid decrease in vision.

These are flags we need to know about, as they could indicate pressure on your optic nerve.

Take-Home Message: Key Things to Remember About Thyroid Eye Disease

I know this is a lot to take in. So, let’s break down the most important bits about Thyroid Eye Disease:

• It’s an autoimmune condition where your body mistakenly attacks tissues around your eyes (muscles, fat) and often your thyroid gland.
• It’s closely linked to Graves’ disease but can occur with other thyroid issues or even with normal thyroid function.
• Symptoms can include bulging eyes (proptosis), irritation, eyelid swelling or retraction, dry or watery eyes, double vision (diplopia), and light sensitivity.
• Smoking significantly worsens TED and can make treatments less effective – quitting is crucial.
• Diagnosis involves a careful eye exam and blood tests for thyroid function and antibodies; sometimes imaging like CT or MRI is needed.
• Treatment aims to manage symptoms during the active phase (e.g., eye drops, steroids, Teprotumumab) and may involve surgery (e.g., orbital decompression, eyelid surgery, muscle surgery) once the disease is stable if changes persist or are severe.
• Most people have mild symptoms that can be managed, but it’s important to get it checked out and monitored by a team that might include your family doctor, an endocrinologist, and an ophthalmologist specializing in orbital diseases.

Warm Closing

Dealing with changes to your eyes and vision can be worrying, I completely understand. It can affect how you see the world, and how you feel you look to the world. But please know, if this is something you’re facing, you’re not alone in this. We have ways to help manage Thyroid Eye Disease, and we’ll work together as a team to find the best path forward for you.