[rparrott]

#1060634

Hi there, I just found this website today and have been reading the posts. Last August I had small bumps appear on each eye and was told the were “penguiculum” and just part of getting old. Later in the year I started losing weight and could not sleep at all. In early January I was diagnosed with Graves and also TED. I noticed my peripheral vision starting to get worse in February and March and then Easter morning I woke up with double vision and it has been with me ever since. I have a press on prism in my right lens which helps correct it. However, it seems the more I wear them the worse my up close vision is.

Two weeks ago my eyes were raging and my endo said my thyroid antibody levels were extremeley high. I am on a short course of prednisone and my eyes are very calm now. However, the double vision is not going away yet. It has only been 10 day on the prednisone though. I am seeing an opthamologist who specializes in TED on Monday. He is partnering up with the endo to work on my case.

Has anyone had double visision get better on its own?

[Liz1967]

#1183812

I have Graves eye disease with double vision and mine did not get better. It stopped getting worse after orbital radiation (not thyroid gland radiation!). I have heard of orbital radiation actually improving the double vision, which is why I did it, but in my case I think it only stopped progression. I was on intravenous steroid for three months and oral steroids for three months and that did not help the double vision. Double vision is no fun. I also had the press on Fresnel prism on my glasses but it does decrease your visual acuity. The ground in prisms are better but expensive and your eyes will be changing so I would not invest in them. I just had orbital decompressions which unfortunately made my double vision even worse so am awaiting muscle surgery. You can cover one eye, but I found that hard to adjust to. Best thing you can do is be sure your ophthalmologist is experienced with Graves’ disease. I have seen during the course of the disease a neuroophthalmologist, an oculoplastic surgeon, a strabismus surgeon and a cornea specialist, in addition to the radiation doctor. Steroids make your eyes feel much better but when you stop them, it often regresses. Hope this helps. This is a difficult disease to cope with but it does eventually quiet down and there are surgical fixes if you need them.

[snelsen]

#1183813

Unfortunately, I have not heard of double vision getting better on its’ own.
Everything Liz1967, said i agree with, and had similar experiences. Same stuff.
OD’s can make double vision worse, or cause double vision. That is why I have been reluctant to have my 2nd eye done. As you see from the end of my post, the strabismus surgery I had is the one that helped me. Just like Liz. I had the press on Fresnel prisms, too, many strengths, but hey we temporizing measures, and as she said, it blurs your vision. Unlike Liz, I do have prisms ground in my glasses, and I am delighted with this But this is long after I knew my eyes were stable. she is dead right about the prednisone. It is temporizing measure, which in a way, gives you hope, for there are a few days relief from double vision. But it is very risky, never given over the long term for this, and when it stops, double vision returns with a vengeance.

I had the same array of eye doc she had, plus a pediatric ophthalmologist, who did the strabismus procedures on both eyes. That is what saved me. I am happy to pay for the prisms ground in my glasses, for I can barely stand it without them. And lucky that I am able to pay the extra money. I don’t know how it breaks down.
This is a tough, tough road to travel. Believe me! I guess I’ll be traveling it the rest of my life. The thing that worries me is if I cannot care for myself, with the array of eye drops, ointments, gels and having to tape my eyes at night.
Shirley

[scanders]

#1183814

I have severe TED, too. I did a lot of reading, and unfortunately I didn’t come across any credible sources that indicated the double vision would correct itself. And every medical professional told me I’d need surgery to correct the double vision, or possibly I could live with prismatic correction. But then the double vision became worse, and I couldn’t even utilize a prism. I had to have a lens of my glasses covered from last April until this January when I had strabismus surgery. (I also had bilateral decompression last September.) My right eye had basically moved over by my nose. (The surgeon said I had one of the toughest Graves muscles he’s ever worked on.) Now I’m left with some intermittent double vision at distance and near, but it’s quite manageable at the moment (I can still get my left eye closed.)I also know that if it gets worse, prism is an option. But by and large I have single vision! The doctors led me to believe that I would still need prism, and that it would be difficult to correct my eye position fully. (Maybe they tell everyone that so we don’t get our hopes up?)
My doctor chose not to treat with steroids unless my optic nerve became threatened. He explained, as Shirley and liz did, that the benefits typically only last as long as the steroid is continued, and he didn’t feel the risk of side effect was worth the benefit in my case since it was clear I was going to need the corrective surgery. I was monitored closely for changes in my vision, of course.
How was your appointment today?

[Kathy10705]

#1183815

I am new to the forum and mostly I’m concerned about my double vision, which at this point is off to the sides, but closer to center than before. I was diagnosed years ago with fibromyalgia, then Sjorgren’s, then thyroid auto-antibodies were found in 2013 (anti-thyroid perox AB). For several years on and off, have had the double vision to the sides, no one could say why. I mentioned to the neurologist (migraines) that it was worse in Feb., it was constant and more towards center, and he ran blood tests for myasthenia gravis antibodies-negative (although one measure 9)? Then he referred me to neuro-ophthalmology. In meantime at follow up with rheumatology in April, they decided to put me on low dose prednisone for Sjorgren’s flare and send me for an MRI (negative). Next, neuro-ophthalmology said I had alternating intermittent esotropia in both eyes. Agreed with prednisone although felt the dose was low and said he would review the MRI. I go back in a couple weeks. He didn’t give me much info except I was sad to learn that he feels there is inflammation in my body (not the Sjogren’s) causing this double vision, and mentioned MG or thyroid, since I guess I have thyroiditis (antibodies). First, just feeling sad and at first, downright depressed about another autoimmune (of some type!) coming down the pike, and what does the future hold. Not been happy with my endocrinologist who I see yearly for nodules, etc, no treatment since my labs are “normal”. The neuro-ophthalmologist gave me more info than endo saying there are more than one antibody against the thyroid and they can fluctuate (this when I said endo told me I never need any antibody tests again because once they are there, they are there). I was surprised the neuro-ophthal didn’t send me right away for any labs either (to re-check thyroid). Even a tiny dose of prednisone is making me nervous and irritable, almost cannot tolerate it. Thoughts are racing. All of this gets overwhelming especially because auto-immunity can be vague. I have wondered from time to time why I feel so intolerably nervous, anxious, poor sleep yet my thyroid is normal, and I wondered if have “just” thyroiditis, (auto-antibodies) can it cause you to feel bad or fluctuate from “hyper” to “hypo” in the way you feel and the way your body functions? Endo says no. But those antibodies must be doing SOMETHING. It is also exhausting advocating for yourself and seeing several physicians, and juggling your meds and all of it, and this is at a major teaching hospital. I am sorry to read that you all are having much worse problems with your vision. It must be very scary. I don’t know where I am headed. Does this take years to develop, I don’t know! Thanks for listening. I guess if anyone has any thoughts or encouragement?….Thanks.

[Liz1967]

#1183816

Kathy, I am wondering if your intermittent esotropia is migraine related. I did see some cases in the literature. There is not much intermittent about Graves esotropia. It stays and usually progresses. As far as the thyroiditis, all I know about that is when I was awaiting my hyperthyroidism diagnosis, the endo seemed to indicate that thyroiditis would be a preferable diagnosis to Graves, maybe because it can be self limiting and a Graves is a lifetime thing. They have never checked my antibodies after the first time to get the diagnosis and all my doctors, eye and endo, agree there is no need as no real correlation with disease progress or symptoms. Prednisone can be frustrating. I was on it for over six months and the side effects were tolerable in light of the major effect it has on inflammation, in my case eyes. Sorry I haven’t got much info for you.

[Kathy10705]

#1183817

Thanks, Liz. I’m one of those who has a really hard time with prednisone. Its been a real struggle. Neither the neurologist nor neuro-ophthalmologist mentioned migraine as being the cause. The neuro-oph believes it is some internal inflammation. I’ll be anxious to hear upon is own review of the MRI if that showed anything. I just had one visit with neuro-oph, so I guess it will unfold. I realize Graves is not intermittent, but I also assumed it didn’t happen overnight. Just been anxious because although this is ‘intermittent’, its now noticeable to me daily. I think the ‘intermittent’ part might have to do with how it presented during the exam? I am fortunate it is not straight ahead, unless its one of those moments I’ve been focused on something close and look up; in that case things can be double, and not just for a moment! From what i know, yes, Graves is most serious than thyroiditis; it’s just that with thyroiditis, you are sort of in a waiting game to see if you become hypo; and some first become hyper. I guess in the meantime I might do some reading on autoimmune in general and how you live with all this, even though I’ve been doing so for years, it just continues to get worse, and that has me down. I’m glad the prednisone was tolerable and so helpful for you! ANd thanks for the comments on the antibodies.

[shimself]

#1183818

Liz1967 wrote:

I also had the press on Fresnel prism on my glasses but it does decrease your visual acuity. The ground in prisms are better but expensive and your eyes will be changing so I would not invest in them.

When after about a year I switched to proper ground in prisms it made all the difference; I didn’t feel able to drive with the stick on fresnel prisms, the day I got the proper ones I was up and away. It was so badly explained by the hospital that I didn’t realise that the proper prisms wouldn’t have the stripes!
So my advice is the moment you feel your eyes might have stabilised get some proper specs (online about $100 without the superthin photochrome big money options), and ok you might have to change them a few times, but you do get your life back in the meanwhile

[Liz1967]

#1183819

If your diplopia worsens after you have ground in prisms, you can always stick a 2or3 prism diopter Fresnel over the ground in lens at least temporarily and it won’t cut vision much at that minor power, especially if the ground in prism strength is split between eyes. I have stick on prisms in 3, 5, 7, 8, 15, 20, 25 and 35 prism diopters and had 8 diopters ground in. Graves patients have more prisms than other patients!

[steves]

#1183820

Hello Liz1967 — I am new to this forum, and not sure how to participate. I read your post about the different Fresnel lenses, and am curious about your experience. What was it like to use 35 diopter prisms? My doctor stopped measuring me after 30, saying I would be uncomfortable with stick-on prisms any higher. I estimate I would need between 40 and 50 diopters; although perhaps even higher by now. I don’t think I have stabilized yet. Did you try 35 diopters on one lens? Or did you split it with half on each lens? Have you had strabismus surgery? — Thanks, SteveS

[Liz1967]

#1183821

SteveS, at 35 prism diopters on one eye, usually the nondominant eye, it cuts your vision pretty much. They say at that strength you are basically seeing with one eye, but for me, I could navigate much better than covering one eye. My case was complicated by the fact I have cataracts from the steroids and radiation, so my vision is already decreased without the prism. If you have good vision, I would imagine the 35 would work better. Yes, you can split the prisms so you are wearing them on both eyes. At one time, I had ground in 4 prism diopters on each eye, 6 stick on on left, 3 on right, giving me a total of 17. I will have strabismus surgery in September hopefully. Waiting for post orbital decompression changes to stabilize. I am wearing 15 prism diopters on one eye right now, slightly under corrected to force my brain to fuse images and maybe tug a bit on muscles. Also doing exercises to try to stretch muscles but don’t know how well that is working. With this disease, you will try anything.

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