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  • Momof5
      Post count: 118

      I’ve tried to go through the forum and find the information, but I can’t seem to pinpoint what I am looking for.

      Do you have stats or information about how often TED occurs after RAI? Is it in any way correlated to your TSI levels?

      I think I have read there is an increased risk of developing TED after RAI of about 10-15% even with no symptoms prior. Is this accurate?

      Do most of those who have/had TED smoke or were smokers?

      I think I’m scaring myself more reading the stories about getting TED after RAI.

      I don’t think I have TED now, just lid retraction (which is a more common symptom of just “being hyper” correct?), but am seeing an ophthalmologist on Tuesday for more comfort or diagnosis. I stare at my eyes in the mirror daily. .

      Thanks!

      Kimberly
      Online Facilitator
        Post count: 4291

        Hello – Here are a couple of the more well-publicized studies on RAI and TED, listing the percentage of patients who had either new development or worsening of TED following treatment:

        Bartlena 1998:

        RAI: 15%
        Anti-Thyroid Drugs: 4%
        RAI + Steroids: 0% (although of course, steroid therapy comes with its own risks and benefits)

        Traisk 2009:

        RAI: 38.7%
        Anti-Thyroid Drugs: 21.3%

        Eye complications are certainly not guaranteed with RAI — 85% of the non-steroid 1998 RAI group and 60+% of the 2009 RAI group did NOT have eye complications. However, the increased risk is certainly something to take into consideration when making a final treatment decision.

        The latest guidance on treating hyperthyroidism from the American Thyroid Association and American Association of Clinical Endocrinologists (which you can find in the “Treatment Options” thread in the announcements section of the forum) discusses the link between RAI and TED. The section on RAI and eye involvement starts on page 622 of the journal article; page 30 if you download the guidance as a PDF doc.

        Their recommendations are based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”).

        For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

        That’s good that you have an appointment coming up soon with an ophthalmologist – hopefully he/she can give you some additional direction as you make this difficult decision.

        Take care!

        Momof5
          Post count: 118

          I read through all that and printed those pages on the eye piece. Buy, I didn’t read anything about being a smoker or not and if that affected those who had worsening symptoms.

          I know there is no guarantee, it seems like I read a lot of stories of those who didn’t have any eye involvement prior to RAI then developed it after. Since many don’t say if they were smokers or not, I wonder.

          Momof5
            Post count: 118

            What I see in the management guidelines is that people with mild ophthamopathy and high T3 and high TRAb levels are NOT recommended to have the RAI, even being a nonsmoker.

            And, if you do choose RAI, then prevention of going hypO is key to preventing onset or worsening of the disease.

            At least that’s how i am reading it.

            Kimberly
            Online Facilitator
              Post count: 4291

              Hello – Yes, prevention of hypO is definitely key. It’s important to make sure that your doc is looking at Free T4 and T3 when deciding when to start replacement hormone — and not TSH, which can remain suppresed.

              For patients with mild and active eye involvement, the guidance states that RAI is considered an “acceptable” therapy, although it recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. Of course, steroids themselves come with significant risks, so that is not a decision to be taken lightly.

              Take care!

              smtucker
                Post count: 74

                I think it is possible to fixate on the smoking thing too much. Eye disease presents in many people who have never smoked, and in some cases it appears that RAI is contra-indicated. My sister had RAI before these studies were completed and never smoked. Her eyes have continued to worsen over the last ten years even though her thyroid levels are considered to be normal. There is no way to know if her eyes have worsened due to the RAI or just because.

                In my opinion, and I am not a doctor, there is more that the medical community DOESN’T know about Graves’ and thyroids and hormones, than what they do. But we just have to make our choices based on what is known now. 20/20 hindsight doesn’t help us treat our disease.

                *susan*

                Momof5
                  Post count: 118

                  I am more fixated on the eyes going bad in general, not just being a smoker (not and never have been). Just trying to determine if RAI is the right choice.

                  smtucker
                    Post count: 74

                    Mom,

                    So hard to know what the answers are. So little knowledge compared to a lot of other diseases. You will find the best answer for you.

                    *susan*

                    adenure
                      Post count: 491

                      Part of the reason I chose surgery was a fear of TED. I know that TED can happen, even after a thyroidectomy though (as did happen to Shirley). I have dry eyes, but otc tear drops help, and it’s not that bad. But, I would be a liar if I said that I’m not afraid of TED. I mean, it doesn’t occupy my days and my mind or anything, but it’s in the back of mind. I figured if I could avoid something that could contribute to it (like RAI), I would. But, again, I know there are no guarantees.

                      Momof5
                        Post count: 118

                        I honestly feel more calm with surgery. My endo didn’t like that thought, and my husband thinks RAI is easier, although he would support me in my decision.

                        I keep waffling back and forth. My endo said to wait until we get me more stable, and I’m trying to do that, but it’s hard because I think it’s looming in my future.

                        Gabe
                          Post count: 182

                          Momof5. I too feel more calm about surgery, as crazy as that sounds since its not calming to enter into any surgery lightly! So as a compromise and to remain open to options, I’ve scheduled my surgery consult for June 5. That gives meds time to work (which I believe they are making me mental!) and to be as sure as I can be that surgery is for me and not my normal impulse behavior.
                          My goal is that the second half of 2013 will be MUCH better than the first half!

                          Best wishes, Karen

                          Momof5
                            Post count: 118

                            Karen, it’s nice to know others feel that way too. I’m just too scared of my eyes popping out of my head from popping a pill. That makes me sound like a lunatic, but so be it.

                            My neighbor just had to have half her thryroid removed because of a nodule, and she loved her surgeono, her scar is already looking fabulous 2 months post surgery, and she loved the guy. I’m taking that as a really good sign.

                            Now, to just get stabilized. I’m so anxious and i feel like I’m going crazy. I feel worse since I’ve been on the meds since before I knew.

                            smtucker
                              Post count: 74

                              I chose surgery as well. I was not a good candidate for RAI since I already have eye involvement. Since surgery, my eyes are improving with each day. I am only two weeks post-surgery so I don’t know all of the implications yet of course.

                              My surgeon, who only operates on thyroids, adrenal and pituitary, says it is rare these days to have a patient who is having surgery due to Graves, but it was far more common years ago.

                              *susan*

                              Momof5
                                Post count: 118

                                Susan, that’s wonderful about your eyes!!!

                                I have an ophthalmologist appt on the 19th. My left eye is the one that I’m concerned (or maybe just mental) about. It’s slightly swollen (not that you can really see it, but I can feel it). Both eyes are white. But, my left sometimes feels like there is an eyelash stuck on the corner of it. If I pull my eyelid up so it doesn’t crease, that feeling goes away. But, I could be hyper paranoid about it. I don’t know. I’m hoping the ophthalmologist doesn’t say it’s just allergies (which seems to be a common theme on the board).

                                My husband wants me to stay on the meds for at least a year to give myself a chance, but gosh, I don’t wanna feel like this and ride a rollercoaster for a year!

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