[scanders]

#1060335

Hi,

Nice to have found this forum! I was diagnosed with GD around Labor Day (Thought it was menopause, but I happened to have a routine check up, and found the GD.) About 6 weeks later I developed intermittent double vision and was diagnosed with TED. That was after 6 weeks on MMI, and I’d guess that’s when my thyroid levels started going a little low for me. I ended up becoming overtly hypothyroid for a while. Looking back, I think I had TED symptoms long before the Graves symptoms. But now the double vision is constant, and I’ve had to get a prism in my glasses. I’ve acclimated to the prism so I get single vision as long as I have the right chin tilt, but now I find I can’t get into focus at all to read. Initially my downgaze was still intact if I just removed the glasses to read. Now that’s pretty tough if not impossible without covering an eye. Just wondering if this is pretty normal as I adjust to the prism? Same thing with the computer–I can cover an eye (have to use a patch if I want both hands free to type), or adjust the font when possible to read with the glasses on. Small print? Pretty hard right now.

My thyroid levels are still a bit in flux, and my eyes just keep getting worse, although I’m hopeful, as always, that this latest dose change is the one to bring stability. Also, I’ve been told by the endo, 2 ophthamologists, and the orthoptist that eye symptoms may improve in general when I’m out of the hot phase, but the misalignment most likely will not correct without surgery. Guess they were trying to give me time to get used to that idea? Is that the common course with the double vision/misalignment? Sorry for rambling.

[Ski]

#1182006

Hi there, and welcome!

Sorry to hear you’re dealing with this! I think the first thing I want to confirm is that you know when your doctors talk about the “hot phase,” they’re talking solely about the TED, which has its own separate disease curve from the thyroid disease. While there is some evidence that TED symptoms can worsen while we are experiencing hypothyroidism, finding your correct thyroid hormone level may not do very much to improve the eye symptoms overall. I know, that’s not what you’d like to hear, but I think it’s important to be realistic.

The double vision is a particularly annoying feature of TED — the tiniest of changes between the two eyes’ tracking abilities can cause it, so then it’s just a question of degree. Prisms can be helpful, if your issue is stable, but during this phase of TED, symptoms can change in a rather random way. I’m sure you’ve had the baseline talk about TED, but just to be completely clear, the symptom of double vision is typically due to the swelling of the muscles around the eye, to the point where movement in one direction or another is impeded for one or both eyes. Not all the muscles swell, and to make things even more complicated, they can swell and shrink apparently on a whim, so the origin of the double vision can change, meaning the prism would need to be moved in order to accommodate the new direction, as things change. Stick-on prisms can be moved to accommodate, but that can be frustrating too (multiple appointments, etc.).

Using a patch to have single vision can be a really good solution, as long as you swap eyes now and again in order to avoid either eye becoming weakened by lack of use. The complication with that is the fact that you lose depth perception, so you need to be extra careful if you’re forced to drive with a patch.

When your eyes ultimately become stable, you can evaluate where you are and see whether you need surgical correction to maintain single vision. Most patients have some improvement at the final (third) phase of TED — I had some proptosis that made me look different, and it ultimately went away to the point that my eyes look nearly the same as when I started. My issue was minor, to be sure, but I do know that improvement comes, so it pays to wait through the process because correction too early can cause worse problems for some (surgery can stimulate the antibodies and cause more swelling), and if you made corrections that ultimately corrected themselves, you’d need correction for the initial correction, which would be rather annoying.

I doubt any of this is new information for you, and I hope more people jump in who have been through it, but I hope this helps, at least to know!

[npatterson]

#1182007

Hi,

The only thing I would add is that as long as you are having a “doctor’s change”, the place that makes your glasses will usually replace the lenses for free. Places like Lenscrafter’s will do that. They used to require that you buy one new pair of glasses (meaning frames and lenses), but then they will replace the lenses. When I had my initial surgery for double vision, they were being replaced every week. When I went in last week to get some temporary glasses following recent cataract surgery, they said they would replace the lenses with a doctor’s change…and I was using old frames. Obviously, check with the manager, but it should be possible. Prisms IN the glasses are much easier to use than the ones that stick on, and they both cost about the same…and the stick-on ones do not get replaced for free.

Take care,

Nancy

[scanders]

#1182008

Thanks for answering. I do understand that TED and GD run two separate courses, although the eye doctor did indicate that becoming hypothyroid while being treated for hyperthyroidism could worsen symptoms. It gets a little confusing for me when the endo said my last labs indicated I was becoming hyper again, and this would explain my worsening TED. But, my FT4 wasn’t even back up to midrange yet, and my FT3 had crept up a bit, but still was in the reference range. But no doubt, the TED had worsened in this time frame, connected or not.

I’ve had the prism 2 1/2 weeks, and already notice some subtle changes and have to tilt my chin higher now to stay in single vision with the prism. I guess my vision is sort of a moving target at this point. And I also understand it will be some time (maybe years?) before we know for sure if I’ll need corrective surgery or not. It sounds as if they were just trying to have me thinking about the possibility. More than one person have commented on the position of my eyes. (They were trying to be helpful, in some weird way, by pointing out to me that it looked like something was wrong with my eyes–I looked a little “cross-eyed.”)

The patch works, but it’s awkward at work. And we’ve had a lot of snow and black ice here this winter, so to have impaired depth perception while driving isn’t good, although on dry pavement, during the day, I think I do just fine. The eye doctor differs, although it is legal in our state to drive with only one eye. I also miss wearing my contacts. I feel as if I’m missing a protective layer from my eye, or something, and they’re even more exposed to air. (I have lid retraction, too.) But except for switching from distance to close-up, the prism still seems to be working for me for the most part. I’m trying to make the best of it–but some days it’s a little tough, to be honest. And some days, my eyes just hurt. And I hope I can figure out how to hit a golf ball come spring with this crazy vision.

[snelsen]

#1182009

Hi, a quick note to acknowledge your post, and let you know I know EXACTLY HOW YOU FEEl, if you find some of my old posts, you will read about it . Double vision terrible. The only way I could look with single vision was straight down at my shoesl I had the stick on prisms several times, cause my eyes kept changing, and i did not want to spend money having prisms ground in lens that would soon need to be a different strength. I did NOT have the experience of having free replacement of lens when i needed different prisms, i did not even try, for they said no. that is why i kept the patches longer when my eyes were changing every other hour.. Ski’s post is a good one, describing the whole darn thing.
This is a late night for me, I have to go to bed. WE can talk/write more in next day or two, and you can read at the end of my post the hell i have experienced with TED. Best surgery of all of them, and the one that kept my sanity, which was about to go away was the strabismus surgery, easy to have, gets rid of double vision, but has to be done when eyes are stable and the they can make changes on stable measurements. way too tired to write more welcome
Shirley

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