[Liz1967]

in reply to: Double Vision #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!

[Liz1967]

in reply to: Anyone out there who has had IV steroids more than once? Left eye for vision loss 2012. 2015 all over again in my right eye. #1183885

Laura, sorry you are having a recurrence. That is something all of us with the eye disease really fear. I had optic neuropathy several months into the Graves eye disease treated with 12 weeks of IV SoluMedrol. After the sixth infusion, I had a total thyroidectomy. The optic neuropathy was fixed but the other eye signs, retraction, diplopia, etc continued to worsen and I had orbital radiation with oral steroids two months after end of steroid infusions. I never had much proptosis but had bilateral decompressions recently, which have made a world of difference in how my eyes look and feel. I hoped to avoid the decompressions but I was told by all the docs that in the case of a recurrence, it can help avoid optic nerve compression then. I have known people who have had to have the orbital radiation after failed decompressions, which in my case was what made me go for the radiation first. I would go with the decompression surgery. I am having strabismus surgery soon but I don’t know how that would work with only one eye having had decompression. My left eye has been worse all along, had the neuropathy as well as slightly more swelling, etc. but I had both eyes done. Before muscle surgery, I would be sure everything that needs to be done is done. You don’t want to have to have decompression after muscle surgery is done.

[Liz1967]

in reply to: TED – treatments? #1183843

Mass Eye and Ear is a great facility. The ophthalmologists there will know. I have TED and my double vision started out like yours, with it clearing after half hour or so in morning and returning if tired. This lasted a couple of months and then it did become constant. I had a total thyroidectomy. There are some studies that indicate that in some cases, this will prevent or even help the eye disease. The thyroid radiation can actually make it worse or cause it to happen. I would avoid it. There are options for the eye disease but mostly you try to wait it out and treat symptoms. You can get prisms for the double vision, eyedrops for the dryness and taping eyes shut at night for lid retraction. Mine was pretty bad so I had steroids, orbital radiation and just finished bilateral orbital decompressions. I have had Graves and eye disease for two years. You are going to be seeing good doctors at Mass Eye and that is the most important thing, to find the right specialists. Good luck!

[Liz1967]

in reply to: Well, here goes! #1173719

Interesting about the soy. I finally read the Synthroid insert which warns against eating cottonseed meal, infant soy formula, high fiber and, of all things, walnuts! This is separate from the warning to wait 4 hours before calcium, antacids, etc. Even my endo was unaware of the walnut thing. Interferes with absorption. Coffee will do it too, even if you wait an hour. Trick with coffee is to be consistent so your levels remain stable. I stopped coffee for a few months and it messed up my levels. Hope you get it figured out.

[Liz1967]

in reply to: Graves disease and tinnitus and/or hearing loss? #1183833

I get tinnitus with ibuprofen, aspirin, antihistamines and anti anxiety meds. Lots of drugs can cause it. Seems to last a bit even after you stop the drug. It is annoying. There are also supplements that can cause it. Would be nice if it were something fixable like that. Hope you get some answers.

[Liz1967]

in reply to: Graves disease and Thyroid Eye Disease #1183668

I have had Graves eye disease for two years. I had a total thyroidectomy six months after diagnosis, was on oral and IV steroids for 8 months and had orbital radiation. I had double vision nearly from the beginning but the orbital radiation did seem to stop its progression so I could wear 8 prism diopters to correct it. I then waited nearly a year to be sure everything was stable and had bilateral orbital decompression surgeries at the two year mark. My diplopia worsened a bit but the redness and chemosis are gone, dryness, eyelid swelling and lid retraction greatly improved, and eyes no longer bulging at all. Now awaiting muscle surgery to correct diplopia because the double vision that was worse postop has improved and continues to improve, so I need to wait until eyes are done changing. If I had it to do again, I would have had the thyroidectomy immediately at diagnosis instead of waiting six months. My thyroid surgeon indicated that most of his Graves patients’ eyes are stable within a year of thyroid removal. Seemed to work that way with me. Give yourself time because you want the eye disease to be “burned out” before starting surgeries. I did not notice things getting better, but they stopped getting worse. It is a frustrating disease but the surgeries correct most of the damage. As far as your thyroid replacement, I was never good on methimazole. I felt bad and levels were up and down. The levothyroxine has been much easier. I was always within normal limits on it and felt better right away but it has required some fine tuning over the past year to get my own optimal dose. The steroids can affect your thyroid levels, they affected mine, so give yourself some time off them to get your levothyroxine adjusted. I am on 88 micrograms 4 times a week and 75 three times, so as you can see, the doses can be micromanaged. Don’t be afraid to ask for slight changes depending on how you feel. Good luck. It does get better!

[Liz1967]

in reply to: New to Graves #1183827

Consider having a total thyroidectomy. There is less risk for causing eye problems and for me it was quick and easy. Adjusting the hormone replacement perfectly took a little time, but levels were within normal range right away. I was on methimazole for six months prior to surgery and never felt well, either hypo or hyper. I have not gained weight. Everyone is different so do the research and choose what you feel is best for you. Good luck!

[Liz1967]

in reply to: Double Vision #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.

[Liz1967]

in reply to: Double Vision #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.

[Liz1967]

in reply to: About 14 months post TT and still working on meds #1183733

I had my TT about when you did and just now am at what I feel is optimal dose of levothyroxine. I blamed about every symptom and illness I have had during that time on thyroid levels. In my case, it finally dawned on me that I have had some of these things long before the Graves and I tended to blame everything on the Graves. Now I have only a few symptoms I have determined to be thyroid related, like lid retraction, hair loss, pulse rate and insomnia or fatigue for extended period. That being said, some people do have trouble recovering from surgery but that should disappear in six months I would think. Anyway, I had headaches, occasional stubborn sinus infections, muscle strains, allergy etc. over the course of my life before Graves, but only a few symptoms that were exclusive to Graves. That is my conclusion but everyone is different.

[Liz1967]

in reply to: Total Thyroidectomy, still Hyper? #1183709

I had a total thyroidectomy 16 months ago. My values were checked every six weeks at first. I started at 112 micrograms of levothyroxine. This was fine for several months and then values were a bit hyper, requiring a drop to 100. Long story short, your body does need time to adjust and once you get close, checking values sooner than every 3 months merely confuses the issue! These values do not occur in a vacuum. Your health, thyroid hormone requirements, etc. are variables that affect your lab values. It took going a little hypo from too little levothyroxine and then slowly increasing to reach the optimal dose. I am at 88 micrograms three times a week, 75 four times a week and I feel normal. Labs now checked every three months, mainly because I have the eye disease and a bit hyper affects the eye symptoms a bit. I have never regretted the thyroidectomy. It is easier to adjust levothyroxine than methimazole and thyroid storm is off the table. Give it time, you will figure out at what level within the normal range you feel best. Some people are more sensitive than others and everyone’s requirements are different. I have found the tsh to be most reliable as it is a value over time rather than a snapshot like the ft4. Good luck! You will know when you are at your optimal dose. Hope this helps.

[Liz1967]

in reply to: TED (thyroid eye disease) seven years later #1183629

Shirley, I forgot to mention I use Restasis drops also. It is a cyclosporine drop. I have been using it for two years. Not totally sure if it works, but when I try to stop it, things do seem to get a bit drier so afraid to stop! There is a soft steroid, Alrex, which can be used longer term as it is used for seasonal allergic conjunctivitis. I used lotemax twice a week, which is alrex only a bit stronger. There are also nonsteroidal anti-inflammatory drops, like diclofenac drops, you can ask your eye doctor about. Anyway, I hope you find something that helps. I just had orbital decompressions on both eyes and have white, not red, eyes for the first time in two years. Still dry but better.

[Liz1967]

in reply to: TED (thyroid eye disease) seven years later #1183627

Shirley, I am sure you have already tried this, but i would suggest a corneal doc to consider either punctal plugs or cautery for your dryness. It works great. If you have no glaucoma issues, maybe a soft steroid a couple times a week would help. Or maybe bandage contact lens? I am not a doc, just a couple suggestions of things that have helped me.

[Liz1967]

in reply to: Radiation treatment for double vision #1183642

I had orbital radiation about nine months into Graves ophthalmopathy. I should have had it sooner as studies show it works better earlier. My lid retraction was so bad I could not close my left eye past the top of the iris, like not at all! I had about 4 prism diopters of esotropia ( double vision). The radiation was accompanied by oral steroids. Halfway through the twelve treatments, the lid retraction improved so I could shut my eye. The chemosis improved too. The double vision progressed a bit to seven over the next couple months but basically everything pretty much stopped progressing after that. I did end up with a cataract, a known risk, but as I am 66, this would have happened eventually anyway. I waited a year after radiation to be sure things were stable but nothing changed at all and in retrospect, I could have started rehabilitative surgeries sooner. Just had decompressions last month. Anyway, I have no way of knowing if things would have gotten worse with diplopia without the radiation. I was more comfortable and could wear prisms so I would say it helped.

[Liz1967]

in reply to: Stomach clenches = low TSH? #1183550

Sue, you sound just like me! I just had colonoscopy and EGD for the same clenching sensation in my stomach. I had had a slightly high side of normal TSH a few months back, now corrected, but I was sure it was related to that. The minute the gastro doc started talking about the mind gut axis, I knew. All was normal and the clenching stopped almost immediately after I determined I wasn’t dying of anything! I don’t know if this applies at all, but this disease is so stressful and I think the stress complicates everything. I have TED also, and I seem to have one stress related symptom after another. I do know when your thyroid hormone levels are optimal, your mental status improves too. If I get a lab that looks good, it might be a month or two after before I feel better. It seems to work in reverse too, you get a low result and you don’t feel worse for a few weeks, even though you may be correcting the dose.

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