Everything you need to know about Graves Eye Disease

Graves Eye Disease (sometimes referred to as Thyroid Eye Disease or TED for short) is one of the most distressing, painful and life impacting consequences of Graves disease. It's also the symptom that is immediately noticeable to other people as it is very hard to disguise puffy, bulging, watery, red eyes no matter what you do. When I was first diagnosed, it was actually the diagnosis of Graves Eye Disease that I found hardest to deal with, as a quick google image search showed me how merciless it is, and chats with other Graves Eye Disease patients revealed how quickly it progressed. I was terrified. It’s no surprise that over 60% of patients say it has impacted their psychological health with many saying they’ve lost self confidence and developed anxiety due to the changes in their appearance1. Not everyone who gets Graves Disease ends up with Graves Eye Disease, it happens in up to 50% of cases2 but if you’re unfortunate enough to be one of them, here’s what you need to know:

Fast facts:

  • Removing your thyroid either via surgery or radioactive iodine does not improve Graves eye disease. The two diseases run very separate courses.
  • As many as 20% of patients will develop sight threatening disease
  • Women are five to six times more likely to develop Graves Eye Disease
  • If you are a cigarette smoker, you are significantly more likely to have severe Graves Eye Disease that threatens your vision. Stop smoking immediately.
  • 62% of patients will develop bulging eyes3
  • 51% of patients will develop double vision4

 What causes Graves Eye Disease?

If you have not yet read my 'What is Graves Disease?' page, go there first as this will give you a solid understanding of the causes of Graves disease. If you have already visited that page, you will know that Graves disease is not caused by your thyroid. Your thyroid is actually the victim. Graves Disease is caused by an out-of-control immune system which is producing antibodies to mistakenly attack and overstimulate your thyroid, causing it to produce the high levels of thyroid hormones that are resulting in the symptoms you’re experiencing. Now unfortunately, the tissues around your eyes contain a protein which looks similar to the thyroid and so when the immune system sends out those antibodies to attack the thyroid they can also attack the muscles and connective tissue in the eye socket. This is why so many people (and I mean thousands) email me after having had their thyroid removed only to discover that their Graves Eye Disease is still raging and their symptoms are only getting more and more debilitating. This is the single most important thing that any Graves Disease patient should know: stopping your immune system from producing the antibodies that are attacking the thyroid AND the eyes is the key to reversing both Graves Eye Disease and Graves disease itself.

The symptoms of Graves Eye Disease

  • Dryness and irritation (many people describe the feeling of ‘grittiness’ in their eyes)
  • Redness and pain
  • Sensitivity to bright light
  • Swelling or puffiness around the eyes
  • Decreased vision

 As the disease progresses and swelling continues, it can cause a feeling of pressure in the eyes and severe headaches.  If left untreated, the muscles around the eyes tighten, causing the eyeball to move forward, and this is what causes the “scary stare” or bulging look. This also results in double vision. In some cases the swelling is so severe that it encroaches upon the optic nerve at the back of the eye socket, causing progressive and irreversible vision loss.

 It is important to note that Graves Eye Disease doesn’t necessarily appear at the same time as the onset of Graves disease – it can develop much later on. The two diseases run their own course independently of each other.

Can Graves Eye Disease be treated?

If you experience any of these symptoms, you must ask for an urgent referral to an ophthalmologist who treats Graves Eye Disease as they can help with both alleviating the discomfort in the short term and treating you in the long term. The Ophthalmologist’s number one priority will be to preserve your eyesight and treatment may include the following:

Artificial tears for dryness

When your eyes bulge forwards, the eyelids retract and sometimes cannot close properly. The glands that produce tears to lubricate your eyes can also be affected by the antibodies and so artificial tears are often recommended to be used liberally throughout the day, along with thicker gels/ointments at night. I tried many gels and ointments and found them disgustingly thick, gluggy and difficult to use. The artificial tears that I found to be most effective is a brand called Clinitas Soothe, which is available over the counter at most good pharmacies or on Amazon. Even though my Graves eye disease is also in remission as my body is no longer producing the antibodies that caused it, I have long term, irreversible surface damage and I still use this brand today. 

High dose steroids

Acute swelling that causes double vision or even vision loss may be treated with very high doses of steroids, however whilst the dosage might suppress the inflammation response, I found the side effects to be worse than the problem I was trying to treat and had to stop quickly. My correspondence with other patients suggests this is very common.

Radiation therapy

Radiation therapy targets the inflammation in the tissues behind the eyes and when combined with steroids, is reported to be very effective and have a really high response rate. However, it can cause or worsen the dryness and comes with up to 20% chance of cataract formation and a slight risk for tumours later on.

Surgery

Known as orbital decompression, this is an operation to reduce the bulging of the eyes (sometimes called exophthalmos), and in some patients with severe thyroid eye disease, to relieve pressure on the optic nerve (the nerve connecting the eye to the brain) that can cause reduced vision.  The aim of the surgery is to make more room in the eye socket, by removing bone from the walls of the eye socket (the orbit) to make the orbit bigger and allow the eye to settle back into its socket. Sometimes, fatty tissue is also removed to make more room. Whilst this is major surgery, it is generally regarded as safe and effective long term but you should discuss your specific risk profile with your Doctor. As with all surgery, it does come with a degree of risk, and some side effects such as numbness of the cheek and nose area due to nerve damage, sinus problems and short term worsening of double vision. I’ve heard from several other patients that they’ve had to have multiple surgeries to get improvement. 

Medication

A new drug is now available with promising results in multiple clinical trials. It has been proven to reduce the bulging and double vision, reduce the pain, redness and swelling and improve the appearance in moderate to severe cases of Graves eye disease. I have not used it so cannot advocate for it but I strongly recommend that you discuss the option with your ophthalmologist as well as the risks and potential side effects. You can find the safety profile with a simple online search. Many of the reported adverse effects are transient and manageable(e.g. headaches and dry skin), but some are severe (e.g. loss of hearing and alopecia). If you choose to go down this path, make sure you are fully informed.

Vitamin Supplementation

There is plenty of reliable data and patient stories showing that supplementation of selenium reduces both the severity and the progression of Graves Eye Disease. In clinical trials, selenium was proven to significantly improve quality of life, reduce symptoms and slow progression of Graves Eye Disease and best of all there were no adverse events. In this trial5, dosing was at 100 µg daily. While there have been no studies of vitamin D supplementation in patients with Graves Eye Disease, there is a substantial body of evidence that shows it has an anti-inflammatory effect. I always recommend that you check your levels with a blood test to ensure you are supplementing appropriately. 

The bottom line

Graves Eye Disease is a serious, progressive and sight-threatening disease and if left untreated can worsen quickly, causing debilitating life-long symptoms and appearance altering effects.  As well as working with your ophthalmologist to treat the symptoms, you must address the cause, which is the production of antibodies that are attacking the tissues in your eye socket. This is how I halted my Graves Eye Disease and reversed my Graves disease, and my comprehensive guide provides a step-by-step explanation of how I did it. 

 

1. Kahaly GJ, Petrak F, Hardt J, Pitz S, Egle UT. Psychosocial morbidity of Graves’ orbitopathy. Clin Endocrinol (Oxf). 2005;63(4):395-402

2. Wang Y, Smith TJ. Current concepts in the molecular pathogenesis of thyroid-associated ophthalmopathy. Invest Ophthalmol Vis Sci 2014;55:3:1735-48.

3. Bartley GB, Fatourechi V, Kadrmas EF, et al. Clinical features of Graves’ ophthalmopathy in an incidence cohort. Am J Ophthalmol. 1996;121(3):284-290.

4. Terwee C, Wakelkamp I, Tan S, Dekker F, Prummel MF, Wiersinga W. Long-term effects of Graves’ ophthalmopathy on health-related quality of life. Eur J Endocrinol. 2002;146(6):751-757

5. Marcocci C, Kahaly GJ, Krassas GE, et al. Selenium and the course of mild Graves’ orbitopathy. N Engl J Med 2011;364:20:1920-31.