[kaicee118]

#1019721

Hi folks – I have written recently that I’ve recently been diagnosed officially with TED. I’ve had double vision and droopy lids for over a year. However, just this weekend, my lids are in their "most droopiest" mode and I’ve also had the pleasure of excessive tearing, itchiness and soreness.

This sort of thing has happened before in my life due to some allergies, but this doesn’t feel like allergy. I’m assuming it’s related to Graves.

I have a few questions – I will probably have more in the future – but here goes…

1. I am tentatively planning to have the thyroid removed this spring – will this removal in any way help my eyes get better (please say yes)?

2. I’m seeing a doc on Friday who specializes in double vision – he’s an "orthoptist" if I remember correctly. I also have a regular optometrist, an ophthalmologist, and now an ocular-plastics guy. Is it normal to have all these eye doctors???

3. I know Ski said that GO will run its course and sort of normalize when it goes into a cold phase. In the mean time – I just got prescription sunglasses for the first time in my life (photophobia started way back when with the double vision); I try to rest my eyes as much as possible; what else can I do? For all of you who have had these problems, what did you do about work? I’m having a hard time looking at a computer 8 hours a day…

Any advice is appreciated! Otherwise, I’m sort of just venting. Thanks ” title=”Smile” />

[Amanda]

#1073684

Hi Kaicee,
Addressing your work question: I work in sales so I understand the suffering of working in front of a computer and having to make eye contact with people all day long when you have TED. The most helpful thing you can do is keep your eyes wet. I did not understand this until I joined this board. My ophthamologist never explained to me about having dry eyes or what to do about it (I think I was her first TED case). Get good prescription eye drops. Lots of people on this board have recommended Opitvar. I have tried Patanol and like it too. Both work much better than any OTC drops. The other thing that has helped me with working in front of a computer under flourescent lights is wearing a baseball cap, or any hat with a brim that helps cut out the light.
Best,
Amanda

[sabinaa]

#1073685

Oh, eye problems are the worst!

As to your question, the reason the eyes become irritated is not because of your thyroid, it is because Grave’s is an auto immune disorder. So, unfortunately, even if you remove your thyroid, your eye problems may not disappear. For that, you really have to bring your immune system back to balance. In my case, I took minimal PTU for a little while. Once my T4 and T3 were close to normal – I stopped the meds all together and began some life style changes, like eating healthy, liver and colon detox, relaxation activities, no more coffee, reduce sugar, fats, junk food, and most of all, stress.

My Grave’s has been dormant for 2 years. My eye problems continued for a while but they are finally beginning to look normal again. It takes time. There is no quick fix. But in my case, my eyes moved pretty much back in to their sockets, and the right eye, which stood out with a glare so much, is looking pretty close to the other one. I still have some puffiness. Lubrication is a must and I still use lubricating eye drops every day. Sometimes I gently massage my eye balls and I focus on telling my body to put them back into place. I am thinking that they will eventually look completely normal again.

Anyhow, good luck to you!

[Ski]

#1073686

Just confirming that removing your thyroid will not affect your eyes (sorry!). The two conditions are completely separate, though related (in that they happen together in most patients, even if disease onset is far separated in time).

Helping your body to be healthier, and learning new ways to manage your stress, will help because they will help ANY condition. Healthier = better, no question. It’s not a magical cure for TED, but it may help you to minimize symptoms.

I like to make sure that people understand this clearly, because there are those who have tried new diets, new stress relief methods, a "whole new way of life," and yet still end up with TED symptoms that, to them, are extreme. I would not want any of those people to feel as if they were a "failure" in those other pursuits, because they were worthy pursuits. They just are not proven methods to reduce TED symptoms.

[DianneW]

#1073687

I’d like to add my two cents’ worth here.

One of the reasons working at the computer is difficult for people with dry eye issues is that when on the computer we tend to blink infrequently, which is the last thing we with TED need to be doing. I have a difficult time being on the computer at all unless I make a conscious effort to blink often. There’s a little utility obtainable online (perhaps at the Dry Eye Zone) which consists of an eyeball that blinks every six seconds or so. You can keep it on your computer desktop, where it will remind you to consciously blink regularly. It’s been a lifesaver for me if I want to use the computer.

You might get a better prescription from your double vision specialist that will help with work on the computer. It most definitely is difficult on the eyes muscles to focus and move when they don’t want to work together. I don’t know if your workplace could make any provisions for letting you do some other job duty part of the day, but if it was possible, no doubt the double vision specialist could make that a recommendation if you asked him to.

As Ski said, removing the thyroid won’t help the eye disease—BUT (and this is interesting), by a year after thyroidectomy, most people will see the antibodies that are associated with both hyperthyroidism and Thyroid Eye Disease return to normal. The same happens following antithyroid drug treatment. Having normal, stable thyroid levels tends to be good for the course of the eye disease, while being hyperthyroid is unfavorable, and being hypothyroid is worse.

So indirectly, treating the thyroid portion of Graves’ Disease and keeping thyroid levels stable is always good for the eye disease, and does make a difference. It’s one of the few things we can do about the eye disease (the other is not to smoke or expose ourselves to second-hand smoke).

Radioactive iodine doesn’t have this helpful effect, unfortunately. The antibody levels for people who have RAI are higher than pre-treatment for a few months, and then remain present (elevated) at least five years following treatment. (It’s presumed the radiation-damaged thyroid tissue is responsible for the increased antibody levels.)

It’s also been shown that surgically removing the thyroid and then ablating any remaining thyroid tissue with RAI will actually help the course of Thyroid Eye Disease, presumably because there is no longer any tissue for thyroid antigen to react to, eliminating thyroid antibodies entirely. (This has nothing to do with your case; I just thought you might find it interesting.)

You asked if you needed all those eye doctors. If you’re seeing an oculoplastics doctor and a double vision specialist, I can’t see why you’d still need to see an optometrist and a regular ophthalmologist for the time being, so ask them if there’s a really good reason for having you back. My oculoplastics specialist handled all the functions of my ophthalmologist, and in fact all oculoplastics doctors are fully qualified ophthalmologists only know more about TED than most ophthalmologists. I can’t see where the optometrist would play a role. They only prescribe lenses, but your double vision specialist should do that for you now. I got a really great prescription (prisms and all) from a double vision specialist at Mayo Clinic last summer.

You said you thought the TED would run its course and then "sort of normalize" in the cold phase. I don’t know that you can expect for it to normalize. You might see improvement in some areas. Some people see more improvement than others do, and it’s difficult to tell ahead of time. Proptosis might improve a little, but is unlikely to return to normal. More serious signs of TED are less likely to normalize. If you have a very mild case it’s more likely to show quite a bit of improvement. What do all those doctors you’re seeing have to say about your prognosis?

[kaicee118]

#1073688

Much thanks to everyone for your input. I feel like the TED is the component of GD I know least about, and it’s also the one which is causing me the most grief at the moment.

I LOVE to read before going to sleep, but by that time my eyes are so dry and tired and blurry that I might be able to read 5 or 6 pages and that’s it So…reading is wonderful for relieving stress for me, but I’ve had to limit it.

I just got new glasses for general use, the computer, and then some wonderful prescription sunglasses. I’ve been wearing the sunglasses at my computer, much to the amusement of my coworkers. My boss told me I looked like a Beatle, which made my day!!!

I really do try to eliminate stress whenever I can. I am a naturally anxious person, and I feel that’s probably how I got GD to begin with. Then again, the anxiety has gotten worse with the Graves, so it’s a vicious cycle.

Back to my eyes…I’m going to look for the eye-blinking thing, because I find, at the computer, that when I blink my eyes and leave them closed for a second or so, it feels like such a relief! I also need to call the ophtha about drops. And just as I’m writing this, my lids are twitching so much it’s almost comical!!

The CT scan I had recently showed "mild" changes in the muscles, but yet I’ve had double vision for a year or so. Everything I’ve read about TED says that double vision usually means more than just mild disease, but I can’t seem to adequately describe to my doctors what my eyes do! I see the double vision guy tomorrow, so I’m hoping for some more understanding, and maybe more of a prognosis/plan than I’ve gotten so far!

Again, thanks for all the info and suggestions. I feel like I have questions about GD every day, but I certainly can’t be calling up my doctors that much!

[DianneW]

#1073689

Your CT scan showed only mild changes to the muscles? Mine showed normal muscles, and yet I have had significant double vision, enough to be disabling, and have had a serious case of TED requiring multiple surgeries. So the CT scan doesn’t tell the whole story, as you surmised.

I’m heading out to California to visit family and will be back Tuesday. Best wishes to everyone.

[Author]

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