Thyroid Eye Disease
Graves’ disease is an autoimmune condition. This meaning that the body’s immune system mistakes healthy cells for foreign invaders and attacks them. It is the most common autoimmune disorder in the United States.
A number of conditions can cause hyperthyroidism, but Graves’ disease is the most common, affecting around 1 in 200 people. It most often affects women under the age of 40, but it is also found in men.
Graves’ disease was originally known as “exophthalmic goiter” but is now named after Sir Robert Graves (1796 – 1853), an Irish doctor who first described the condition in 1835. The name has been used wrongly as “Grave’s disease” or “Graves disease”. As it is named after Sir Robert Graves, the correct name is “Graves’ Disease”. If you are interested in the history of the man and the disease, you can read about it at our European Thyroid Association HERE.
- Graves’ disease is the most common cause of hyperthyroidism.
- It is the most common type of autoimmune disease in the United States.
- Graves’ disease affects an estimated 2-3 percent of the world’s population.
“Well, the last time I had a picture taken I could hardly see my eyes because of the weight of heavy eyelid. Then I paid attention to how I was actually using my eyes and I really noticed when I was looking at anything especially the computer I was straining my forehead to see better. Since I have had it done I no longer have to lift the forehead and tilt my head to see. It is amazing! I love…” D. Rock 63 Yrs Old with Fat Droopy Eyes – Salt Lake City, UT
Graves' eye disease (thyroid orbitopathy)
Graves’ eye disease, also known as thyroid ophthalmopathy (exophthalmos), affects around half of people with Graves’ disease. The eyes can become:
- retracted eyelids
- double vision
It is still unclear why Graves’ disease affects the eyes in this way. The severity of the condition does not correlate with the severity of eye symptoms; it can occur before the condition begins, or even without Graves’ disease.
Thyroid Eye Disease
Thyroid eye disease may be seen with an overactive thyroid, a normal thyroid or an underacting thyroid. The eye disease has two phases: active and stable. The active phase usually lasts between six months and two years and is marked by inflammation. During this phase, medical treatment is administered to improve the eye symptoms.
During the second phase, the inflammation subsides (often called “burns out”). In this phase, there is decreased inflammation and more of a chronic change seen in the orbits and the eyelids. This has sometimes been called the “fibrotic phase”.
Thyroid Eye Disease Treatment- Active INFLAMMATORY phase
controlling your hyperthyroidism
Thyroid eye disease (Graves’ disease) only appears in 5 – 10% of people who develop hyperthyroidism. Sometimes it is seen with hypothyroidism and at other times where the thyroid levels are normal. Your thyroid status is assessed by your endocrinologist by not only looking at your thyroid levels, but also levels of antibodies. Some patients will have normal thyroid hormone levels but abnormal antibody levels: this is indicative of underlying thyroid abnormality.
Your endocrinologist will decide the best way to control your hyperthyroid status: some will start you on a medication like Methimazole. Other treatments include surgical thyroidectomy and another one is radioactive iodine treatment to “kill” the thyroid tissue. There are different approaches to the hyperthyroid status: you are best following your endocrinologist’s advice. One treatment is not necessarily better than any of the other two.
Will removal of my thryoid or treatment with radioactive iodine affect my orbital disease ?
If you undergo a surgical thyroidectomy, the endocrinologist or surgeon will put you on a short course of oral prednisone. This is done as there were some reports that suggested that the orbital inflammation MAY be affected by the surgery: this is certainly not proven, but the use of the oral steroids after the thyroidectomy is a very reasonable treatment.
After your radioactive iodine treatment, should they decide to go that route, most patients are not put on oral steroids. However, those with inflammatory and active thyroid orbitopathy may need steroids: we would guide you with that.
Generally, it is important to remember that controlling the thyroid levels will not cure your thyroid orbitopathy. Also, some people assume that the antibodies will be under control once the hyperthyroidism is controlled and the thyroid orbitopathy will therefore be better. That is not the case. HOWEVER, it is important to get your thyroid status stabilized. Once they have it under control, you may be put on a thyroid medication supplement. Over time, thyroid orbitopathy “burns out” but the proptosis (bulging) may or may not change. The inflammation does reduce over time, so that discomfort, pain, etc improve. This, on average, happens over about 18 months after the start of the disease but the period is variable.
Links to Sites for More Information & Support Groups:
There are numerous other support groups around the world with excellent information. If you find one that is especially useful, please be so kind as to share it with me so that I can put it on this website for all my patients. We are always looking for ways to help and support patients with thyroid orbitopathy.
You should know
- Most patients need to use them regularly—at least four times per day and as often as every hour or two in severe disease.
- Use non-preserved tears. The preservatives used in some brands can lead to allergies or irritation with long-term use. Brands include Celluvisc, gel preparations such as Moisture Eyes gel, or lubricating ointments such as Refresh P.M. or Lacri-Lube.
- Thicker preparations like Genteal Gel during the daytime and Refresh P.M are useful for those who need additional lubrication.
- Thicker lubricants can blur vision. Consider using them at bedtime and then use your other teardrops first thing in the morning (to wash out the ointment) and throughout the day.
- Wear wrap-around sunglasses if your eyes are sensitive to light, wind, or other irritants.
- Try to avoid direct heat or air conditioning, especially while driving.
- Use additional artificial tears during activities that cause the eye to blink less and become dry, such as computer use, driving, or reading for extended periods.
- Many patients find sealing goggles useful when working in the garden, hiking or biking. There are several different brands of these goggles which provide a seal around the eyes and increase the moisture to the corneas.
- Reduce salt in your diet to decrease fluid retention.
- Sleep with your head raised, allowing fluid to settle out of your face. Applying warm, moist soaks to the eyelids in the morning helps to dissipate some of the fluid that collects over night around the eyelids and in the orbit.
- Medication to provide moisture, allowing the blisters to heal.
- A procedure to block the tear drainage system, allowing your own tears to coat the eye instead of draining away. This office procedure is very simple, painless, safe and reversible. We usually start with the insertion of plugs which may be removed if they are uncomfortable. We only use cautery of the tear ducts as a last resort and only after a trial of plugs.
With careful monitoring, a second course of steroids can be prescribed for prolonged periods of inflammation. Also, steroids can be injected into the orbit during an office visit. These injections minimize side effects and cause minimal discomfort.
In the early inflammatory phase, we usually put our patients on Diclofenac 25 mg per day and Acular drops twice a day: this combination is useful in reducing the degree of inflammation in the orbit and on the eyes without the use of oral steroids. Oral steroids, however, are needed in the more inflamed orbits and eyes.
Thyroid Eye Disease Treatment – Stable Phase, after inflammation has subsided
- Proptosis (bulging of the eyeballs)
- Upper and lower eyelid retraction
- Lagophthalmos (inability to close eyelids adequately)
- Double vision
- Compression of the optic nerve with decrease in vision
Dr. Patel has designed an approach which is termed “Cosmetic orbital decompression”, using minimally invasive techniques (as far as the patient and onlookers can see!), but with an advanced knowledge of the bony, muscular, fatty and soft tissue changes in this disease. Although traditionally, surgical approaches to the patient with thyroid orbitopathy was staged with bony orbital decompression followed by muscle surgery followed by eyelid surgery followed by any cosmetic surgery needed, Dr. Patel’s approach tries to reduce the number of different operations needed to improve the function and appearance of the eyes, orbits and eyelids.
First Stage- minimally invasive cosmetic orbital decompression surgery
After your clinical examination and review of the relevant orbital CT scans, Dr. Patel will be able to decide the best combination of procedures to give you the best result. We generally operate on one orbit, followed byt the other orbit about four weeks later to allow you to at least be functional with one eye. Our patients find this interval most useful.
During the orbital decompression surgery, a combination of bone removal and fat removal is performed, together with repositioning of the upper and lower eyelids, elevation of the cheek tissues, sometimes with a cheek onlay implant to give volume back to the midface.
- Reduce exposure of the surface of the eye
- Improve the eyelid’s ability to close over the eye
- Improve the bulging appearance
- Relieve pressure-pain
Proptosis, upper and lower eyelid retraction
after cosmetic orbital decompression and upper and lower eyelid repositioning
often, orbitopathy can be asymmetric. Here a right orbital decompression and bilateral eyelid repositioning allows a more symmetric appearance to be achieved.
Compression of the optic nerve with loss of vision
When there is compression of the optic nerve, you will first be treated with systemic steroids by the neuro-ophthalmic team. Some patients need surgical orbital decompression to allow the optic nerves to breath: here the type of orbital decompression is different from the one described above. The aim is to make room around the
optic nerve at the apex of the orbit
second stage- eye muscle surgery
Eye muscle surgery can minimize double vision, but may not completely eliminate it. The goal of this surgery is to create a tunnel of single vision, allowing patients to achieve good straight-ahead vision needed for driving and reading. The patient is able to resume many activities, but still may experience double vision when looking far to the right or left.
thyroid orbitopathy will need strabismus surgery.
Review of eyelids after three months
Although we now try to improve the upper and lower eyelid position during the same orbital decompression surgery (unlike the traditional way done in most parts of the world still), minor upper or lower eyelid adjustments may be needed as the final eyelid positions in thyroid orbitopathy are not always predeictable: this is because of the variable degree of fibrosis in the muscles that affect the eyelid position. We generally wait at least three months before performing any eyelid adjustments needed.
Teprotumumab for Thyroid-Associated Ophthalmopathy
Teprotumumab is a human monoclonal antibody inhibitor of IGF-IR. This drug is administered intravenously once every three weeks for eight treatments and is only used for those patients who are in the active or inflammatory phase of the disease.
Early results indicate that as many as 69% of patients may show a positive response with a reduction in the proptosis (bulging of the eye) and reduction in the inflammation associated with the active phase of thyroid orbitopathy. This holds great promise as the use of oral or intravenous steroids, whilst certainly useful, give variable results and are also associated with side-effects.
We are awaiting approval by the FDA before we can begin to administer this very promising medication. It is possible that some degree of the effects of thyroid orbitopathy may be partially reversed with this drug. However, as with all things in medicine, one sparrow does not a spring make and we, as clinician scientists, will accurately review results of more than one trial and in more than one country to get an accurate idea of the effectiveness of this medication. Other factors such as side-effects and costs will also have to be considered if approval is obtained. Watch this space!
Prominent Eyes and Eyelid Revision Surgery
- Patients who are very near-sighted will have large eyeballs and may give the appearance of proptosis with attendant upper and lower eyelids retraction
- Overzealous upper and lower blepharoplasty with skin and muscle resection can make eyes look more proud and give upper and lower eyelid retraction
- Trauma can cause bony changes around the eye (the orbit and the malar bones), with resulting malposition of eyelids.=
- Familial: some families have proud eyes naturally or naturally small malar bones which can give the appearance of prominent eyes with changes in the positions of the upper and lower eyelids, sometimes with symptoms of dryness and inability to close the eyelids
There are times when orbital decompression surgery to reposition the eyeballs posteriorly may be necessary even in the absence of thyroid orbitopathy. However, this is undertaken only after careful consideration of all options.
Cosmetic Orbital Decompression
Some people have very prominent eyes or asymmetry of the eyes where one is bulging. Often this is caused by a medical condition called Graves’ disease or thyroid eye disease. But often the eyes appear bulgy or prominent due to trauma or just being born that way. This can be quite concerning for many people in that it makes them appear intense or not “normal.” Many patients ask if there is anything that can be done and in the past, the answer
was not too much, at least safely.
Today, this is no longer the case. With advances in the understanding or bony and soft tissue anatomy and the changes one sees in thyroid orbitopathy and other conditions, it is now possible to design a decompression approach which we call “cosmetic orbital decompression.” This is usually undertaken with other soft-tissue work, like on the eyelids,
the cheeks and sometimes the brows.
These are powerful operations which can be quite life changing!
Customized Approach To Surgery
Orbital surgery of any kind should never be undertaken lightly. There is a reason why the majority of plastic surgeons do not undertake this type of surgery: it requires specialist training, detailed knowledge and experience.
First and foremost, when performed in the presence of thyroid orbitopathy, the disease has to be in the non-inflammatory phase and the thyroid control has to have been stable for at least a year.
The degree to which the orbital changes cause problems need to be assessed: these changes may affect you cosmetically, with dryness, redness, irritation or even orbital pain. Examination will show us the degree to which these findings may or may not be helped.
A detailed assessment of a CT scan allows us to assess the soft tissue and bony anatomy and changes. All orbital decompressions are not the same. The old-fashioned traditional “we will remove the floor of your orbit” decompressions are not performed in our clinic as they can be complicated by myriad problems including temporary or permanent double vision, malposition of the eyeball (“sunset syndrome”), permanent numbness, and need for further surgery.
When surgery is planned, we will discuss with you the best approach. Whereas a detailed discussion of the surgical procedure may not be helpful to you, you should be aware that we will be addressing some or all of the following parts of your orbits and face:
- The bony orbit
- The soft tissue orbit (fat)
- Upper eyelid retractors
- Lower eyelid retractors
- Lateral canthus
- Soft tissue and/or skin excess
- Cheek ptosis
- Negative malar eminence
This type of surgery surgery is performed under general anesthesia and takes about an hour to two hours, depending upon everything that needs to be done. Patients are allowed home the same day with written instructions. Bruising and swelling are at their worst for the first two weeks: use of ice helps a lot. It should be remembered that some degree of swelling and bruising in patients with thyroid orbitopathy will remain for several weeks.
and patients recover in about two weeks with bruising and swelling. Although the surgery only takes an hour or two to perform, these are complex procedures. We will ensure we discuss your postoperative care, time off work, physical activities, etc with you prior to and after your surgery. Every patient is different and we can only provide you with rough guidelines.
A detailed knowledge of anatomy and physiology are paramount when designing orbital decompressions.
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Dr. BCK Patel MD, FRCS
Salt Lake City, Utah 84106, USA
(801) 413-3599 (phone/text)
Dr. BCK Patel MD, FRCS
617 E Riverside Dr Suite 101
Saint George, UT 84790, USA