20 things that every newly diagnosed Graves patient in Colorado should know
Graves disease or Thyroid Eye Disease is a difficult eye disease to have. As an oculoplastic and orbital surgeon in Denver, I am one of the specialists that treats Graves patients. It is easy to say “Atleast it is not cancer” to try to reassure a patient with Graves. The reality is that the eyelid and eye socket changes of Graves Disease can cosmetically disrupt the lives of Graves patients. This article is meant to educate Graves patients in Denver and the rest of Colorado all the up to date information for the treatment and management of Graves Disease. It is expected to be comprehensive in nature but if you are diagnosed with Graves eye disease most likely you have been reading about it on the internet and whatever information your doctor in Colorado has in their office. Below are the twenty things that I would want any newly diagnosed Graves or Thyroid Eye Disease patient in my office to know when they are diagnosed. This summarizes the essential things that make up the key points about Graves disease that every Graves patient in Colorado should know.
1.An endocrinologist be evaluating your thyroid function and an oculoplastic surgeon to evaluate your eyes. disease
Graves disease is an autoimmune condition that can affect the eyes, skin and thyroid most commonly. Usually there is an antibody (chemical) in the blood that can disrupt the thyroid, attack the eyes, sometimes both and sometimes neither. No one knows why some people have this antibody and others do not. Most likely it is partly genetics and partly environment. We do know that smokers and ex smokers have a higher rate of Graves disease.
Graves disease is often associated with having high thyroid function. That being said up to 20% of patients can have normal thyroid function. Some patients can even have low function of the thyroid. If you are diagnosed with Graves disease of the eye, an endocrinologist should be checking your thyroid function. Abnormal thyroid function is associated with health risks to your body. It should not be left untreated. In some patients with a high thyroid, once the thyroid in put under control, the eye findings may improve.
An oculoplastic surgeon is a specialist of the eyelid, tear duct and eye socket. Two of those three areas are affected in Graves disease, the eye socket and the eyelid. As a result, evaluation by an oculoplastic surgeon can be helpful to see if your Graves disease is clinically progressing or stable. I usually see patients once a year for two years if they don’t have progression. Of course, if there is progression there is a need for more frequent visits.
2. If you are smoking, you are increasing the risk of you going blind from Graves Disease
If you are unaware that smoking is bad for you, I am not sure where you have been the last 20 years. Smoking makes Graves much much worse. The course of Graves disease or how long it lasts is three times longer with smokers than non smokers. Not only that but the risk of developing blindness with Graves is much higher in smokers than non smokers. In fact the risk of needing to have surgery for Graves disease is higher in smokers than non smokers. In short, if you are diagnosed with Graves disease and smoke I would make it first priority to quit as soon as possible.
3. Graves disease’s effects is not just cosmetic in nature
Graves disease of the eye can cause discomfort of the eye socket from congestion in eye socket from an increased amount of fat and muscle in the closed space of the eye socket. Along with that, Graves patients can complain of eye pain and headaches.
4. Radioactive Iodine can make Graves Disease worse.
Patients who have Graves disease should know that it can definitely get worse from radioactive Iodine thyroid ablation. If you do not have Graves disease in your eye, there is no need to worry about developing Graves after radioactive iodine. The studies have shown that there is no development of eye findings in patients who never had eye findings before the iodine. Patients who have eye findings may benefit from oral steroids treated for 2 months before the radioactive iodine and then stopped a few days before treatment. Most endocrinologists have patients seen an oculoplastic surgeon several months before radioactive iodine treatment to assess if they have eye findings that necessitate steroid pretreatment.
5. Graves causes increase of the muscle, fat and swelling in the eye socket
In short, the immune reaction in Graves disease causes increased muscle and fat production in the eye socket. This causes the eye socket to get crowded. The increase in size of the eye muscles that control movement of the eyeball can cause double vision. The increased fat also can cause the eyes to bulge. The fat can fill with fluid and cause upper and lower eyelid bags as well.
6. Graves Disease can present with many eye symptoms
There are many symptoms that patients with Graves disease will have. They include
Dryness of the eyes: This can manifest as foreign body sensation, blurry vision, feeling something in the eye.
Eyebags: Puffiness of the lower or upper eyelids
Angry Looking Eyes: Elevation of the upper eyelids and redness of the eyes from irritation
Bulgy Eyes: Eyes getting pushed forward out of eye socket
Double Vision: Seeing two of something or ghost images
Loss of Vision: Trouble seeing objects or decreased vision in one or both eyes
Trouble seeing peripherally: Side vision being blocked out
Color Vision problems: Trouble seeing the true colors especially reds
Light flashes when looking up: This is also known as photopsias where one sees a flashing white light
Eye pain or pressure: Feeling pain in the eyes or fullness in the eyes
7. Eyelid Retraction is the most common sign of Graves Disease
The most common sign of Graves disease is eyelid retraction. What does that mean? The normal upper eyelid height is right at the iris edge or 4 mm from the pupil to the upper eyelid edge. In Graves disease there is stimulation of the eyelid muscles along with scarring of the eyelid so the upper eyelid elevates above the iris so that the white of the eye is visible underneath the eyelid. Eyelid retraction is the most common sign of Graves disease and most patients will first know they have Graves eye disease when they go to a doctor presenting with what they believe is “just an eyelid problem”.
8. The eye can bulge with Graves (This is known as proptosis)
Increasing the fat and muscle in the eye socket causes the eyes to bulge forward. When this happens the eye can have trouble closing and can dry out. On top of that the eye can be pushed so the patient feels it is cosmetically unacceptable.
9. Thyroid Function must be assessed in all patients with Graves Disease
Though graves disease can be associated with normal thyroid function in 20% of patients, Graves disease patients can have low or high thyroid. Uncontrolled hyperthyroidism can make Graves eye disease worse so patients with eyelid retraction, double vision or proptosis must be tested for thyroid dysfunction. This includes TSH, T3, T4. An endocrinologist in Denver can help regulate the thyroid and then help the Graves eye disease. That being said, once the thyroid is under control, Graves disease can still progress independently of the thyroid function.
10. Double vision is a common finding in Graves Disease
When the eye muscles get swollen from thyroid eye disease or graves disease, a patient can get double vision. The most common swollen muscle is the inferior rectus, followed by medial rectus, superior rectus, lateral rectus and oblique muscles. As a result, looking up can get restricted most commonly. The double vision can be fixed by a strabismus specialist once the graves disease is stabilized for 6 months.
11. Graves Disease lasts 1 year in non smokers and 3 years in smokers
Graves disease has a course that is usually an acute inflammatory phase where the eye is red, angry and swollen first followed by a more indolent quiet phase. In non smokers the course of the disease is one year whereas in smokers it is 3 years. Graves is a disease of inflammation and smoking causes and promotes inflammation which is much worse for Graves. This is why it is important as a patient who has graves you must avoid smoking.
12. Pulsed IV steroids may help some patients with Graves Disease
A trial that was done in Europe (EUGOGO trial) showed that pulsed steroids can be helpful in Graves or Thyroid eye disease patients. Pulsed steroids are given over for a couple days evey week. The total dose that is given is usually under 9 grams where liver failure and death can result. Also, one has to wait for 6 weeks to see the effects of the pulsed IV steroids. Oral steroids is not very helpful for long term improvement in Graves disease.
13. Supplementation with Selenium, Quercetin may be helpful.
Selenium is a vitamin that is found in several studies to be at lower levels in Graves patients. Studies have shown that Graves patients have lower levels of Selenium compared to non Graves patients from the same region of the world.The dosing of Selenium is 100ug twice a day. Quercetin is also anti-inflammatory and is a good supplement to reduce inflammation.
14. Radition of the eye socket may be helpful
Radiation to the eye socket may be helpful in patients who have progressive double vision in Graves. Radiation has other side effects in that it can cause side damage and affect the eyes and optic nerve.
15. The Bulging Eye Socket can be fixed but not without risks
A patient who has Graves disease can have pressure on their optic nerve of the eye. When that happens the optic nerve is compressed by the swollen muscles and fat in the eye socket. It can literally get crushed and damaged. In that case to release the pressure the bones of the eye socket can be broken to create more space for the optic nerve. Luckily this has to be done in only about 5% of graves patients.
Sometimes patients want to have the eye socket bones broken because their eyes are bulging but the optic nerve is not being pressured. This version of “cosmetic” orbital decompression can be done but orbital decompression comes with risks such as 1. 30% chance of new onset double vision 2. Vision loss 3. Bleeding 4. Scarring 5. Infection 6. Need for more surgery 7. Eyelid position changes 8. Eye socket bones breaking and the brain space being entered. They are serious risks to consider though they are uncommon.
16. There are surgical and non surgical ways to fix double vision from Graves
Double vision from Graves is usually done after an orbital decompression. There are two ways to address double vision: Prisms and surgery. Prisms are additions to the lenses in glasses that allow to help resolve the double vision. Other times eye muscle surgery is done to align the eyes. In some cases after eye muscle surgery, prisms are then needed.
17. Eyelid surgery can improve the “Graves stare” that is commonly seen
The eyelid retraction seen in Graves disease can be fixed by releasing the eyelid muscle or lengthenin the upper eyelid muscle. Also cosmetic upper and lower blepharoplasty can be done at the same time to improve the appearance of the eyelids as well. These surgeries are done after orbital decompression and eye muscle surgery.
18. Cosmetic Blepharoplasty can improve the increased fat and skin in the upper and lower eyelids.
A cosmetic upper eyelid blepharoplasty or lower eyelid blepharoplasty can be performed once things are stable and once other surgeries (eye socket and eye muscle) are completed to remove the extra bulging fat along with the extra stretched skin.
19. No Surgery should be done without 6 months of stability.
The point of performing Graves surgeries is to create an improvement in bulging, double vision or eyelids The best thing is to not operate on a moving target so patients eye disease must be stable for 6 months before performing surgery. This means that the objective findings of the patient (proptosis, double vision) are stable for atleast 6 months before surgery.
20. Graves can reactivate after years of being quiet
In rare and unusual cases, Graves can reactivate after being quiet for several years or more. It is important to know that Graves disease can lie in wait and recur once surgery is performed though this is extremely uncommon.
As an oculoplastic surgeon in Denver, Graves patients are a large part of my practice. If you have questions about your eye disease, make an appointment to be seen. I am happy to help