[lakeview]

#1068356

I am not sure what to say,,, but I am in the same boat as you… although I still have my thryoid.. The doctor is just waiting until my eyes go into remission and then surgery … my right eye is stuck looking down and I see double vision looking straight on or upward…. its very hard…
I am having absolutely no treatments…. since my optic nerve is not threatened at this stage. So it is wait and see…. or for now… wait and don’t see.
Cheers,
Lakeview

[Andros]

#1068357

kaicee118 wrote:Some of you may remember that I had my thyroid removed back in May. I’ve been feeling better overall since then. However, I have developed more serious issues with my eyes and it’s very frustrating.

Since mid-July, I’ve developed a "vertical" double vision – that is, I see one image above or below the real image. It’s only when my eyes get tired, ie at work, at the computer, reading, etc. I just had a CT scan done, and there have been changes to the muscle in my right eye since January. I have an appointment to see the occuplastics guy, but not until September 30th. I also have more ptosis (yes, ptosis, not proptosis, although the CT scan says they see evidence of proptosis), grittiness, watery eyes, etc.

I’m very nervous. How does this get better? Even if the eye disease is self-limiting, will the muscles go back to the way they’re supposed to be? Is surgery likely? I really hate having this double vision! Also, it’s limiting my reading, and I adore reading! Anyone have any advice, or can you tell me something about your eyes and how you resolved it?

Thanks in advance.

Karen

Hi, Karen. It has been my observation that one should not have corrective surgery until the antibodies have quit infiltrating the orbits. Many who have had surgeries prior to that find very disappointing results and also many have had to go through the surgeries all over again. I must tell you that the orbits are very delicate places and can only take so much of this before surgical damage becomes permanent so do think long and hard about this.

In the meantime, talk to your ophthalmologist about prisms to correct the double vision.

Lu Anne

[kaicee118]

#1018995

Some of you may remember that I had my thyroid removed back in May. I’ve been feeling better overall since then. However, I have developed more serious issues with my eyes and it’s very frustrating.

Since mid-July, I’ve developed a "vertical" double vision – that is, I see one image above or below the real image. It’s only when my eyes get tired, ie at work, at the computer, reading, etc. I just had a CT scan done, and there have been changes to the muscle in my right eye since January. I have an appointment to see the occuplastics guy, but not until September 30th. I also have more ptosis (yes, ptosis, not proptosis, although the CT scan says they see evidence of proptosis), grittiness, watery eyes, etc.

I’m very nervous. How does this get better? Even if the eye disease is self-limiting, will the muscles go back to the way they’re supposed to be? Is surgery likely? I really hate having this double vision! Also, it’s limiting my reading, and I adore reading! Anyone have any advice, or can you tell me something about your eyes and how you resolved it?

Thanks in advance.

Karen

[debrahaller]

#1068358

Kaicee,
I hope everything turns out okay for you and your eyes. I am not where you are at as far as the graves(just diagnosed) but I already told two doctors i want it out !!! But i did not know that after the thyroid is gone you can still have eye problems. I mean do we not have enough going on with our bodies to think you fixed the problem to turn around and have another. Well good luck to you. Deb

[Ski]

#1068359

You may be able to deal with the double vision by using patches over one eye ~ prisms are more difficult to use when your eyes are still fluctuating. You can get "stick-on" prisms so they can be easily changed (as opposed to "ground-into-the-lens" prisms), but it’s just as frustrating to get up in the morning and see that the prisms that worked yesterday no longer work this morning.

If you patch one eye, the double vision will be gone so you can function. The doubling comes from one muscle in one eye being swollen and then the eyes don’t track together any more. Make sure you switch the patch from eye to eye periodically so one doesn’t get weak from non-use. Discuss this with your ophthalmologist so you do it the best possible way.

It’s all very true, TED needs to run its course before you can have surgery, but in the meantime there are things you can do to help you function. In many cases, the eyes return almost to normal when TED is done, but typically there is at least a little scar tissue left behind, so we can’t necessarily expect absolute normal. Just hope for the best, and try not to stress TOO much over it, because stress leads to antibody activity, and that can end up making things worse. I know the up/down double vision is the WORST, it’s the toughest one to deal with, according to the ophthalmologists I’ve heard speak on the topic. Anything you can do to relieve the symptoms and function will be worth it.

Just as general info for others perusing this thread ~ Graves’ thyroid disease is a separate, but related, condition. Thyroid Eye Disease (TED) can happen prior to the thyroid disease, concurrent with the thyroid disease, or after the thyroid disease (or not at all!). Treatment for one does nothing to help the other.

[kaicee118]

#1068360

Thanks everyone, for your advice and for attempting to "talk me down!" ” title=”Smile” /> I took all the stuff that went along with the Graves relatively well, but I’ve had a terror of something happening to my eyes. For the past few years I’ve had a sort of double vision that, if I focused hard, I could bring together again. This vertical business doesn’t come together no matter how hard I focus, so it’s freaking me out a little. Also, on some days it causes tension headaches, which I’m not used to having.

I know, Ski, that stress is bad news for everything. Most times I’m okay, but when I wrote out my problems for this thread, I got kind of wound up!

I have good doctors, and I have good relationships with all of them. My optic nerve isn’t threatened, either, so it’s sort of a wait and see (or not see!) game, as you said. Also, I have the added adventure of the periodic testing for the optic form of myasthenia gravis, because my ptosis is quite significant.

Best of luck to all you guys who are also having eye problems.

Thanks again.

[Blessings]

#1068361

My prayers are with each one of you. I, too, have Graves Disease and Thyroid Eye Disease. I’ve had my thyroid removed, had a bilateral orbital decompression due to the pressure on my optic nerve and am approaching the onset of radiation for the TED. It has been a journey, to say the least. Hang in there!

[MRHabetz]

#1068362

I know I should research more…….but I’m confused!! My eyesight has been getting bad lately. How do I know if it’s something to do with the Grave’s or just getting older? I had glasses until I was 13 then my eyesight improved to where I didn’t need them anymore. Now I’m having trouble reading and seeing the computer screen sometimes!! It comes and goes……….what do you think? Sorry, I hope I’m not hijacking your thread!

[Ski]

#1068363

The only way to know for sure is to go to your ophthalmologist ~ if you suspect that it may be TED, an ophthalmologist is really your ONLY choice, opticians only deal with prescription glasses, not eye disease.

[Author]

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