[Ski]

#1061962

Hi there,

Yes, lots of our participants have TED ~ we have a great deal of information on it. The first thing you should know is that the inflammation is not the same type that would respond to anti-inflammatory medications or supplements. TED is caused by antibodies that attack the tissues behind the eyes, the muscle tissue and the fatty tissue, and causes those tissues to swell, which causes the eyeball to come forward out of the orbit. It is a nasty condition, no fun, causes all kinds of emotional effects as well as physical discomfort, AND has a mind of its own, in a way. The good news is that it has a defined disease curve that ends with some improvement, typically, and once the disease has gone "cold," there are surgical corrections that can be pursued. It can take anywhere from one to three years to fully resolve, and in the meantime there are some things that can be done to limit the ultimate damage, but you need to see an ophthalmologist or neuro-ophthalmologist who has some experience with TED patients. We recommend a doctor associated with ASOPRS (http://www.asoprs.org), because they are qualified doctors with additional training in your condition. They’ll have knowledge of the latest treatment and corrective options, which is crucial. STILL, at times there is nothing that can be done, so prepare yourself for that. If you smoke cigarettes, there is ver solid evidence concluding that smoking (or living with a smoker) can predict the worst cases and the longest disease curves.

The regular disease curve is composed of four parts. At first, there’s what they call the "hot phase," in which the swelling comes and goes, double vision comes and goes, worsens and improves, all pretty randomly. Taking substances that "boost" the immune system will also increase symptoms, so be very careful about taking anything like that. After the hot phase is over, there is generally a period of stability, where things may not be good, but they are at least the same day to day and week to week. After that, there is a period of slight improvement, and finally, the "cold phase," which is when things are completely stable, even if not back to normal. Once you’ve been stable for a certain period of time (I think I’ve heard 3-6 months?), the doctors can, in hindsight, say that you’ve reached the cold phase, and at that point, you can talk to the surgeon about corrective procedures.

Once you get to that point, there are several procedures that can help (I won’t go into it right now, you’re not quite there yet, but you can search them up in posts here), and they need to be performed in a specific order to get the best possible result. The good news is that I know quite a few people who’ve had the very worst TED symptoms, and now they look GREAT.

I hope you’re making sure that your eyes are lubricated ~ the extra exposure can cause dryness, and that can bring on corneal ulcers, which can cause permanent vision loss. Use artificial tears (NOT get-the-red-out drops), without preservatives. They can be pricey, but your vision is worth it. Make sure your eye closes all the way at night as well ~ if not, ask again about how to protect your eye during the night, because that can cause some serious damage as well.

We’re glad you found us!! There is hope, trust me. ” title=”Very Happy” />

Also, we have been told that Graves’ and TED happen concurrently in many people, but they don’t always occur together. Some people have one and never have the other, but more often than not, a patient of one disease has some level of both. TED can occur before Graves’, during Graves’, or many years after Graves’. Very capricious. If your thyroid levels are good now, that’s great ~ make note of where they are now, so that if they go wonky, you’ll have some idea of where you want to return, the point within the normal range where you feel well. Just make sure you know the hyperthyroid (and hypothyroid) symptoms, get tested occasionally (annually, perhaps), and if you feel many of the symptoms of one or the other imbalance, ask for lab tests to see if it has to do with your thyroid hormone levels. Catching any imbalance early on will minimize the amount of time you feel ill.

[ZachB]

#1061963

I have had very severe TED and graves since I was about 14 yrs old with my right eye being noticebly worse. I took a large cycling dosage of Predisone steroids and it worked somewhat back when I was about 15. I had my second dose of radioactive Iodine about a month ago, I went hypo or underactive, and am now taking 20 mg of predisone a day for a few weeks and feeling some good results. You definately want to get the thyroid under control before trying to fix the eyes. I have grown to like the very odd bulging eye look, and all the stares that I constantly get. Try to think that stares and head turning are because you’re really good looking…it boosts your self confidence. I find the really little kids are the funniest with their stares and comments. A lot of people find large eyes exotic and attractive. I appreciate the beauty of the non-symetrical and imperfections. It’s probably boring to look like everyone else, although I could stand to be just halfway between normal and where I’m at with Marty Feldman eyes.

[leondat]

#1017973

So…I am new to this site and have Thyroid Eye Disease. I have been tested for hyperthyroidism, 2 of the tests showed my thyroid levels to be ‘slightly elevated’ but the other tests indicate my levels are normal. My left eye is bigger than my right which is just embarrassing but my question is regarding the inflammation. My eyes are so inflammed and swollen all the time and nothing I have tried (supplements – Circumin/Tumeric) seem to be lessening the inflammation.

Does anyone have this? If so have you tried anything for the inflammation that works?

[leondat]

#1061964

Thank you for your suggestions! I have been feeling extremely hopeless for a while but am now thinking there may be hope on the horizon.

Thanks again!

[snelsen]

#1061965

I have TED, feel free to ask any questions you want. The hardest part (other than all of it being hard!) was the double vision, and waiting to have it corrected until I was out of the "hot phase" or active phase. The eye muscle (strabismus) surgery was wonderful. Hope you don’t get double vision, lots of people don’t. I am in the "cold phase" or inactive phase, finally, and have had three surgeries. I still take eye drops, lubricant at night, and sunlight or even ambient light bothers my eyes a lot.
Shirley

[Hannah]

#1061966

Taking substances that "boost" the immune system will also increase symptoms, so be very careful about taking anything like that.

@ Ski

Hi Ski, could you elaborate more on this?
I grew up taking a lot of supplements and vitamins…and still continue to do so (on days when I remember).
Could this be affecting my TED as well?

[Bobbi]

#1061967

Some folks erroneously feel that when we develop an autoimmune disease that we have a weakened, or compromised, immune system. That is not necessarily true. Our immune system has created an antibody to one of our own body tissues, by mistake (if you will). In the case of TED, that tissue is something in the eye muscles. In the case of the thyroid version of Graves, the antibody is to something in the thyroid cell. Anyway, any substance the boosts the immune system, that makes it work better, or harder, will also increase the antibody levels. And it is those antibodies that are causing our problem in the first place. That is why Ski said to be cautious about taking additional supplements that boost the immune system. We need to walk a line, and find a balance, between being healthy (which involves getting the proper nutrition and vitamin/mineral intake) and going an extra three miles taking immune-boosting substances. We don’t want a weakened immune system, we want a healthy one. So, if you are ill with a virus, or something that suggests your immune system is struggling, taking additional vitamins and minerals will help you regain health. If you are healthy (except for the eye problems, or thyroid levels) taking a whole bunch of additional vitamins and minerals and immune boosters might make those conditions worse.

[gatorgirly]

#1061968

Hi leondat,

I’m not much of an expert on TED, but I wanted to let you know you are not the only one who seems to have one eye larger than the other. I always had small, squinty eyes and since developing Graves, my eyes are wide and I get compliments on how beautiful they are, but I’m very self-conscious about it. My right eye is slightly larger and I notice it in photos and almost try to squint that eye when I know photos are being taken, but it never seems to work. I’m a 26-year-old female in otherwise (minus the Graves) good health so having one googly eye really stands out.

I’ve had Graves for over a year. I did RAI in February of this year but am still very hyper and am now considering surgery. Until my Graves is under control, I know eye surgery is not an option. Fortunately I have a good neuro-ophthalmologist who is well-versed in TED and Graves, so he is monitoring to make sure my optic nerve is not compromised.

While the cosmetic issues may be the most embarrassing for you right now, going blind or having double vision would be much worse, so please make sure you see a neuro-ophthalmologist or at least a very good ophthalmologist.

Your neuro-ophthalmologist or endocrinologist might prescribe Prednisone. It’s a steroid that helps with inflammation. I was put on a huge dose before, during and after RAI since there is a suspicion that RAI can make TED worse, so maybe the Prednisone helped by preventing any worsening symptoms during the RAI, but Prednisone is a powerful drug. It made me feel 1000% more hyper (racing heart, etc.) and made me ravenous and gain a bunch of weight, but it was better than having my eyes completely bulge out of my head.

Wishing you the best!

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