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  • runbarb
      Post count: 17

      I would like some information from those who have experienced TED. I had radioactive iodine treatment for Graves in February 2011. By April I was experiencing blisters in my eyes and by June was forced to wear a patch over one eye due to that eye having moved inward in the socket thereby causing double vision. My regular opthamologist sent me to an eye surgeon in June 2012 as he said he thought I was stable and could have strabismus surgery. Eye surgeon said no that I was still unstable and he would have to see that I was stable for a period of 6 mos. before he would do surgery. I go back later this month to see him. Does anyone know if changing the dosage of Synthroid might be causing this eye instability? I have been on several different dosages of Synthroid in the past year and a half and wonder why and if this is effecting the eyes. If anyone knows of a connection I would appreciate hearing about it. If anyone has had the strabismus surgery I would be interested in your result and the healing time, complications or other information you could share about your experience. Wearing an eye patch for a year has been tedious to say the least and I yearn for the day when my eye can be put back into place and I don’t have to be the object of stares from others who wonder why I have a patch on.

      Bobbi
        Post count: 1324

        Synthroid is chemically identical to our body’s own thyroxin. Changes in dose can affect whether we are euthroid, hypothyroid, or hyperthyroid, but does not cause eye changes to my knowledge.

        snelsen
          Post count: 1909

          Synthoid is unrelated to TED. As Bobbi said.
          As I have said in many posts, strabismus surgery has been the very best, most wonderful procedure in my 3 years of TED hell. Sorry, but that is what it is and has been for me. The double vision was terrible. As I “progressed” in the active phase, I was seen by a neuro ophthalmologist, who checked my vision to be sure that I was not losing it. As it turns out I was losing my vision, so I HAD to have an OD in the active phase.

          But, your question was about strabismus surgery and when to have it. First of all, deciding when the active phase is over, and we can have corrective surgical procedures, is kind of a crap shoot, a little bit. It is determined by objective and subjective measurements, and throw in the passage of time. In other words, I am assuming that you have not have diplopia (double vision) measurement over the period of time you have had TED. So it might be a bit harder to tell by the objective measurements over time, cause you don’t have them.
          My experience is this. when you begin to notice that your eyes are not changing every day or so, getting better, getting worse, etc. etc, there is a good chance you have begun the inactive phase, or cold phase.

          Regarding what the eye surgeon said, I guess I would like to know what criteria he used to say that you are still unstable. Is the first time he has seen you? Does he have prior measurements specific for diplopia (doubt it, they don’t do that generally speaking.) But if it is a pediatric eye surgeon, who does strabismus surgery (not an oculofacial surgeon) and you have seem him before, it is probable that your eyes are still changing.

          To further answer your questions-I thought strabismus surgery was a cake walk. No pain, IMMEDIATELY RELIEVED OF THE DOUBLE VISION. A miracle for me. Elevate head of bed for 2-3 days, use the ointment as directed. It is marvelous. Write with more questions. I did not have bruising, but I am vigilant about cold packs and elevating your head at night. I actually did that more than 3 days, probably 5 days.
          Shirley

          Bobbi
            Post count: 1324

            The eye disease has an active phase — or “hot” phase — during which the adverse changes develop and progress. Then, it goes into a “cold” phase. During the cold phase, the symptoms of the disease abate, lessen. So there is a long-ish period of time during which changes are occuring to our eyes, either worsening, or getting better. Our opthamologist surgeons like to wait until the changes have stopped, if at all possible. That way, they know how big a fix to make. If they operate too soon, they may make changes that have to be undone by a later surgery. A case in point was my double vision, which went away almost completely during the cold phase. I only double now when I am very tired, or temporarily hypothyroid. Had I been able to cajole my surgeon into surgically fixing my double vision before all the changes had taken place, I would undoubtedly have had to undergo another surgery to undo the changes that were made too soon.

            runbarb
              Post count: 17

              Thank you to all of you who answered my post. It is much appreciated. My experience has been that my eye doctor did measurments every time I saw him usually peripheral vision tests and pressure. I had to have surgery in both eyes for the pressure build-up, glaucoma. He felt that the tests he did were stable and sent me to the surgeon in June. That doctor did other tests with prisms. I was not sure what he was doing as I thought it would be the same tests I had been having with the other doctor. The surgeon says I am still unstable so I assume the tests he did showed this and the other tests by the other doctor are worthless? I do understand from the surgeon that you must be stable for 4-6 mos. before it is recommended that you have surgery as otherwise you may rotate back and have to have the surgery again. I have such bad double vision that I have to wear a patch all the time or cannot function, I cannot walk a straight line for even 10 feet. My eyes are very dry and I use Lotemax and Refresh constantly. I get so depressed about the double vision and my uncovered eye gets so tired as it is doing all the work. I suppose I am lucky as I still can drive, go to work and read. I was concerned that the inability to get my synthroid level correct was causing the eye problems and the waiting for teh strabismus surgery. Sounds like that is not the case. I just need to be patient but it seems to take so long for this to get to the cold phase. It has been 15 mos. now. Am I near the end?

              Kimberly
              Online Facilitator
                Post count: 4290

                Hello – Unfortunately, it’s difficult (even for our docs!) to tell when the “cold” phase of TED will appear, as every case is a little different.

                One quick note on the Synthroid issue…while I agree with the others who posted here that a dosage change should not affect your TED, I attended a presentation in San Francisco earlier this week from a doctor who noted that having constant swings between hyper & hypo can actually aggravate eye issues.

                So if you are having huge swings in levels (as opposed to fine-tuning your dose), you might talk to your doctor about this. The pre-packaged dosages of replacement hormone don’t get everyone to their “sweet spot” — some patients end up alternating doses every other day in order to get their levels right. Just a thought.

                Take care!

                snelsen
                  Post count: 1909

                  to Kimberly.
                  In my experience, and from what what both specialties tell me, there is little or no communication between ophthalmologic surgeons and endocrinologists.
                  And, in my own experience, neither specialty was not a bit interested in the progress or lack of it,with either TED, or Graves’. Maybe this is an exception, but I doubt it.

                  Did the presenter in San Francisco make this remark as a supposition he held, or did he present a body of evidence to support his comment.
                  Shirley

                  snelsen
                    Post count: 1909

                    To runbarb. I understand how miserable you are. As Kimberly says, even the docs disagree on when the inactive phase begins. In your last post, it sounded like the different, or most recent surgeon, is the one who said your eyes were not “ready.” But I wondering if you should question that a bit more, for you are so miserable. Sounds like he performed different tests, so he has no real baseline, except his one time testing of you, which is his FIRST testing.

                    If you have patched your eye for over a year, your brain has “learned” that only one eye is working. Has anyone suggested you try the temporary prisms, (stuck to the back of your glasses) to see if it helps your double vision?
                    Seems like there might be another whole problem since you eye has been covered for a year. I wonder if a neuro ophthalmologist could offer an opinion here. As I write this, I KNOW how sick you are of going to doctors, getting eyes, measured, and all of that. I also know how demoralizing the double vision is.

                    I think, from your post, that you had an OD in the active phase??? What surgery did you have for the swelling and glaucoma?
                    Best to you in this struggle
                    Shirley

                    runbarb
                      Post count: 17

                      Thanks again for the posts and encouragment. SNelsen: I have not had OD but had radiation in September 2011 and the glaucoma surgery was to put a hole with a laser in the upper part of my eye to relieve the pressure. He did both eyes. My doctor had mentioned prisms but said that I would be changing them so often that it would get expensive. Now my eye is so severely rotated that I think it would not help. Actually both eyes have rotated but the right eye is the worse. Surgeon says I will need strabismus on both eyes which I assume they do at the same time?

                      Kimberly: Intriguing that there may be, according to your SF presenter, a link between the swings in synthroid dosage and my eye problems. I have been up and down the dosages in the last year and I never seem to be stable in that. I see endo in September for annual visit and plan to ask him then. Will have another blood test in about 4 weeks. Am fatigued constantly and having to adjust to that as I was a marathon runner and now I can barely go 6 miles. It is depressing. Yes, I still run with the patch on but do so very carefully!

                      Bobbi
                        Post count: 1324

                        A bit of clarification: you may have not noticed that I mentioned that my double vision corrected during the cold phase, to the point where I only have it when I am very tired or “when I am hypothyroid.” Having wonky thyroid levels does interfere with the functioning of our bodies, including those eye muscles responsible for TED. The distinction is not so much whether synthroid is a causative agent, but whether or not we are on an appropriate dose of it to keep our thyroid levels normal.

                        If you are having trouble getting a dose of replacement hormone that provides long-term stability, then perhaps some trouble-shooting would help. Keep in mind that when we are first going onto replacement, there can be some months of tinkering with the dose. Making minor adjustments should not have an impact on your eye situation, but if you are frequently going hyper or hypo, then perhaps some of the following ideas might help:

                        Make sure to take your synthroid first thing in the morning, on an empty stomach, with a glass of water, and wait a minimum of half and hour or forty minutes before eating or taking other medications.

                        Do not take vitamin or mineral supplements until four hours after you take the synthroid.

                        If you are taking other medications, talk with your pharmacist about how best to space them with the synthroid.

                        The issue is to be as consistent as humanly possible with the taking of the replacement hormone so that a consistent dose of it is absorbed into the blood. Once it is absorbed, it does not matter what you eat or drink, but getting it into the blood in a consistent manner can make a difference.

                        Bobbi
                          Post count: 1324

                          A bit of clarification: you may have not noticed that I mentioned that my double vision corrected during the cold phase, to the point where I only have it when I am very tired or “when I am hypothyroid.” Having wonky thyroid levels does interfere with the functioning of our bodies, including those eye muscles responsible for TED. The distinction is not so much whether synthroid is a causative agent, but whether or not we are on an appropriate dose of it to keep our thyroid levels normal.

                          If you are having trouble getting a dose of replacement hormone that provides long-term stability, then perhaps some trouble-shooting would help. Keep in mind that when we are first going onto replacement, there can be some months of tinkering with the dose. Making minor adjustments should not have an impact on your eye situation, but if you are frequently going hyper or hypo, then perhaps some of the following ideas might help:

                          Make sure to take your synthroid first thing in the morning, on an empty stomach, with a glass of water, and wait a minimum of half and hour or forty minutes before eating or taking other medications.

                          Do not take vitamin or mineral supplements until four hours after you take the synthroid.

                          If you are taking other medications, talk with your pharmacist about how best to space them with the synthroid.

                          The issue is to be as consistent as humanly possible with the taking of the replacement hormone so that a consistent dose of it is absorbed into the blood. Once it is absorbed, it does not matter what you eat or drink, but getting it into the blood in a consistent manner can make a difference.

                          Oh, and one of Shirley’s comments made me think of something I did while dealing with the patched eye. In order to make sure that I did not weaken one eye, I switched the patch periodically to the other eye. This might not be a helpful suggestion to you at this point, but if you have only been patching one eye, you might try forcing that patched eye to “work”, especially at times where it might not be necessary to have an absolutely perfect view of the world. I.e., I wouldn’t switch it for driving!!! I could never get the hang of driving with the eye patched anyway. Depth perception was a real problem. So I was essentially unable to drive in any kind of traffic whatsoever. It was a very long and frustrating time for me.

                          Kimberly
                          Online Facilitator
                            Post count: 4290

                            Hi Shirley – The ophthalmologist who commented that having hyper/hypo swings can aggravate TED actually does look at her patients’ thyroid lab work, so her comments were from personal observation, rather than a research study.

                            One of her other interesting comments was that Graves’ patients who are dealing with multiple doctors are best served if one of the doctors will serve as the point person in coordinating care, and she often ends up taking on that role.

                            That’s no doubt a rarity, but you can definitely see how it would really improve the patient’s experience!

                            runbarb
                              Post count: 17

                              I am having strabismus surgery tomorrow in both eyes. I am excited but very nervous. How many of you have had this and was the first surgery successful? I am told that I have both horizontal and vertical double vision so two surgeries may be needed. Wondered if others had experienced this.

                              Kimberly
                              Online Facilitator
                                Post count: 4290

                                Hello – Hopefully, you will get some responses, but you might also use the “Search Posts” feature in the top right-hand corner of the screen and do a search for strabismus.

                                You can also look for posts from Shirley (snelsen), who has done a great job of documenting her experience with TED. I don’t believe that she needed two strabismus surgeries, though…as I recall, she was very pleased with the results of that procedure.

                                Wishing you all the best!

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