Thyroid Eye Disease

[tnelson51]

Am a newbie here.

I have Graves with only the symptoms for my eyes. My TS3 and 4 are normal so my endo won't do anything for me. tAB's are off the chart (<1000) but that doesn't seem to bother her.

My eye doctor put me on 2 doses of steroids, which helped a little (still have puffy eyes and double vision), but says I can't take them anymore.

I'm worried that my eyes will get worse, and think I should be treated for my thyroid. I have gained 25 lbs in a month, and have heat intolerance. Should I got to another endo. I feel like I'm in a loop. My endo says she doesn't treat eyes, and my eye dr says she doesn't treat Graves.

Anyone else with Graves and only eye symptoms?

[GD Women]

Hello and Welcome. I don't know if I have good news or bad. New news or old news. But here is the news.

Autoimmune thyroid disease is not treated by antibodies, but are treated by thyroid levels.

I am 11 years treated Graves' and 9 years TED in one eye only. Protrusion, stair, wide eyed , sore and gritty, although, no vision problems due to iT. However has not progressed since the first day I recognized it. I use eye drops liberally and also wear protective sun glasses almost year round.

An ophthalmologist who deals with thyroid eye disease is the doctor to go to.

There are two major subtypes of Thyroid eye disease (TED): a milder form related to abnormal thyroid hormone levels, and, an autoimmune congestive disorder that is usually more clinically significant.
With your levels normal I am assuming you have the autoimmune congestive TED.

The autoimmune congestive TED is not treatable nor curable. That is to say, treating thyroid disease does not treat thyroid eye disease. Thyroid hormone levels or thyroid treatment does not affect the course of TED, that is to say, at least they do not have an impact on the antibodies. Thyroid Eye Disease is an autoimmune congestive eye condition that is separate from thyroid disease, but is often seen in conjunction with Graves' Disease. TED is caused by separate but very similar antibodies to Graves'. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain independent of one another. Therefore, making thyroid Eye Disease a separate autoimmune problem. Thereby, one can have TED and not have Graves’ and one can have Graves’ and not have TED. The condition is seen in people with no other evidence of thyroid dysfunction, and in patients who have Hashimoto's Disease.
Nothing can be done about the eyes where they are in the hot/active phase and normally doctors will wait until the cold/nonactive stage before approaching the issue.
We can have multiple flair ups through our lives. Each time we have a hot phase we need to deal with what damage it is doing during that phase. I have read where people have had four hot phases, so far, and need to deal with each bout of inflammation and distruction.

Eye puffiness is usually a hypothyroid eye issue. However, for puffiness raise the head of your bed with a 4x4 under the head of the frame. That helps gravity to keep the fluid from collecting in the tissues of your eyes. Use frozen peas in a ziploc bag to help the pain behind your eyes. Make sure to mark the bag so you don't try to cook them later. Peas work well because they do the best job of conforming to the valleys around the eyes and they give the most complete relief.

Use Lubricating eye drops, artificial tears with natural ingredients /no preservatives and sterile. Not something that gets the red out those can be more drying to the eyes. Look into the nighttime gel products that stay in the eye overnight to provide extra moisture.
The sunglasses they sell for cataract patients are great for keeping light out.
1,000 mg of flaxseed oil, will also prevent eye dryness. Taking 100 mg of grapeseed extract (great antioxidant0 twice daily protect against free radical damage and to help improve circulation and strengthen blood vessels, VISION and benefit TED. Also, colloidal silver supplement (follow directions on the bottle) is good.

The only way to minimize any risk is to keep our stress. By keeping stress down levels down and the symptoms will be less severe. However keeping stress levels down does not guarantee that we will not end up with severe TED.

Follow a nutrient-rich diet, avoiding sugar and saturated fats, and incorporating stress reduction techniques. Diet, supplements and mild exercise are the key ingredients to keeping our immune system healthy, thereby reducing symptoms of ophthalmopathy.

Make sure eyes are getting plenty of rest. Besides striving for 8 hours of sleep, pursue a restful harmonious lifestyle. For instance, too much time spent staring at computer screens causes a syndrome of sore eyes, blurred vision and headaches. Experts advise reducing screen glare and taking a 5-minute break away from the computer at least every 20 minutes. Time spent online should also be used wisely. If you participate in bulletin boards or online chat groups where arguments are common, consider ignoring the posts of the habitually discontent.

Many medications, including antihistamines, contribute to eye dryness and its associated symptoms of tearing. It’s also important to drink at least 8 glasses of water daily to prevent dehydration, and more if artificial heating is contributing to dryness. Humidifiers are helpful for those living in dry climates

And stop to smoking. Cigarette smoking is an important risk factor for a number of common eye diseases. Smoking also enhances the generation of free radicals and decreases the levels of antioxidants in the blood circulation, aqueous humour, and ocular tissue. Thus, the eyes are more at risk of having free-radical and oxidation attacks in smokers.
Smoking, if continued, may perpetuate further ocular damage and lead to permanent blindness. Cessation of smoking and avoidance of passive smoking is advised to minimize the harmful effects of smoking on the eyes.
Also, smoking can aggravate and exacerbate Graves' symptoms.


Sorry you are going through the TED but hope you can find some a resolution.

Good Luck!

[Gio111ca]

Hi GD Women, really great information, thank you.

[Andros]

Am a newbie here.

I have Graves with only the symptoms for my eyes. My TS3 and 4 are normal so my endo won't do anything for me. tAB's are off the chart (<1000) but that doesn't seem to bother her.

My eye doctor put me on 2 doses of steroids, which helped a little (still have puffy eyes and double vision), but says I can't take them anymore.

I'm worried that my eyes will get worse, and think I should be treated for my thyroid. I have gained 25 lbs in a month, and have heat intolerance. Should I got to another endo. I feel like I'm in a loop. My endo says she doesn't treat eyes, and my eye dr says she doesn't treat Graves.

Anyone else with Graves and only eye symptoms?

Oh, my gosh!! You are being horribly mistreated by your endo, I believe. I know you don't feel well but it would just be awesome and ever most helpful if you can post your lab results and the ranges here. We must have the ranges.

And, what antibodies are off the chart? We need those results and ranges also. You should have no trouble getting a copy of your labs. Hipaa Act says you have that right. http://www.hhs.gov/ocr/privacy/

It is not unusual for T3, T4 and TSH to come in in normal range while the antibodies are doing their dirty work. Now, your eye doctor cannot treat Graves'; this must be treated independently. Meanwhile, let your Ophthalmologist do what she can and you may also wish to ask her for a reference to a "better" endo. I think you need one. On the flip side, what your endo may do or not do certainly has a lot to do with the success of the treatment from the ophthalmologist. Ideally, the patient needs to be at least stable.

Have you had a radioactive uptake scan?

Have you had the following antibodies' tests??? TSI would be ultra-important for they are present in hyperthyroid/Graves' and sometimes Hashimoto's.

TSH, FREE T3, FREE T4, TPO (antimicrosomal antibodies), ANA (antinuclear antibodies), TSI (thyroid stimulating immunoglobulin) and Thyroglobulin Ab as well as thyroid binding inhibitory immunoglobulins (TBII.)

You can look all of the above up here so you know what they are for........
http://www.labtestsonline.org/

Worried here. Hope I did not inundate you with too much at one time. I know you are sick. It is hard to advocate for yourself when you are sick.