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  • LillyL
    Participant
    Post count: 25

    I am 52 and was Diagnosed with Graves Disease about one year ago. I have been taking Tapazole since then and now my Endo wants me to have RAI to “Burn Out” my Thyroid Gland. I am so scared to do this but the Tapazole is not working. My Blood Tests just seem to go up and down. We even tried re-starting the Tapazole at a higher dose for one week then lowering it each week and now I am taking 15mg per day but my tests are still “Hyper”
    If you have any suggestions I sure could use your input. I am sick of being sick and so hot and then so cold Yikes this Disease really sucks!
    Thank you in advance for your time.
    :)

    Bobbi
    Participant
    Post count: 1324

    I’m truly sorry that you have not been able to control things with the tapazole. So, yes, it sounds like you need to turn your mind to either RAI or surgery. Needlessly continuing an ineffective treatment is obviously not wise. Since your doctor has recommended RAI, I will tell you that it works, and that it gave me back my health. It also gave my mother her health back about 25 years before I did it. Long-term studies of RAI recipients have shown it to be safe.

    phuffman39
    Participant
    Post count: 8

    You said it gave you health back…do you have any related problems now such as eyes, etc? I am newly diagnosed and have my first endocrinologist appt next week. I thought trying drugs first instead of killing thyroid sounded smart. I am so worried about being hypo and all the problems that brings. It is hard to know what to do! I have eye involvement (opthalmologist diagnosed it) but no vision problems such as double vision just lid retraction and gritty sensation.

    Bobbi
    Participant
    Post count: 1324

    At one point in time, I had almost all of the various “complications” of Graves. I had a moderate form of the eye disease and pretibial myxedema, in addition to the wonky thyroid.

    If you have the eye disease already, there are (conflicting) studies which suggest that RAI can aggravate it. In some cases (which is why there’s no clear-cut answer). RAI doesn’t cause TED, but the symptoms of it sometimes worsen temporarily. Taking a course of steroids while doing RAI, apparently avoids the worsening issue. Surgery has not been shown to worsen the eyes, but surgery has it’s own pros and cons, and must be evaluated case by case.

    As to “being” hypo. I am not hypo because I have normal thyroid levels. Hypothyroid is a technical term that means you have lower-than-normal levels of thyroid hormone. The replacement hormone we take IS thyroid hormone. It is chemically identical to the body’s own T4 (thyroxin). So, provided we are on an appropriate dose of it, we are not hypothyroid. I have been mildly hypothyroid from time to time in the past 15 years (needing an uptick in replacement dose), and have not felt horrid. In some cases, I didn’t even know I was hypothyroid. I know some folks have made an industry out of complaining about replacement hormone not being sufficient, because they don’t feel the way they think they should feel, but in my case — and in my mother’s case, and in the case of lots of my friends, including folks who have had thyroid cancer and all of their thyroids are gone — the replacement hormone works wonderfully well.

    I mentioned my case in response to someone for whom the antithyroid meds were not working. That person continued to be ill. That makes little to no sense, because alternative treatments can work to return us to health. Since you haven’t tried the drugs yet, phuffman39, it is possible that they might work for you. They do work for lots of folks. But if they don’t, of if your doctor strongly recommends something else – for medical reasons that have to do with YOU — you don’t need to be afraid of losing your thyroid.

    Kimberly
    Keymaster
    Post count: 4294

    Hello – Just a quick note on eye issues. The latest guidance on RAI from the American Association of Clinical Endocrinologists and the American Thyroid Association is that 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. Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”.

    If you’d like to view the guidance, you can download a copy here:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf

    Starting on page 8 of the PDF doc (page 600 of the original journal article), there is a nice section on different issues that might make a particular patient choose one treatment option over another.

    The section on eye issues starts at the bottom of page 30 of the PDF doc (page 622 of the original journal article).

    I chose anti-thyroid drugs as my treatment option of choice, but *all* options have risks and benefits.

    Hope this helps!

    snelsen
    Participant
    Post count: 1909

    I will read the study Kimberly mentioned again to see if I missed anything that would address my reservations about RAI and TED. I’d like to preface this with the fact that I ended up with severe TED, which occurred many decades after I have Graves’. I chose surgery.

    My concern is that, the definition of mild TED symptoms seems dependent on the length of time since the symptoms of TED and the diagnosis. My own experience is that I had scratchy eyes, red eyes, dry eyes and slight sensitivity to light at least two years before my diagnosis of TED, and neither eye docs nor I thought a thing about it, except to use eye drops and wear sun glasses.

    Following my concern, is that as TED continued to get worse, I did have steroids, both orally and IV. The steroids diminished the acute double vision for about two weeks. Then the disease process continued with a vengeance.
    So, I will be interested in the long term studies, which I am not sure exist at this time, if after RAI, TED will continue its’ own schedule, and there could be a possibility that RAI could exacerbate it. It seems to me, other than paying more attention to the relationship of TED and RAI, the best way to reach a conclusion would be long term studies.

    So my bias is present, that if I were making this decision today, because of my experience with TED, I would be concerned of any possibility that the combination of TED and RAI might exacerbate my TED after the fact. There is not reason or science for this feeling. It comes under the fact that we usually do have three choices for treatment, and the fact that RAI is “acceptable” treatment for people with TED, would not be good enough for me.
    Back to Kimberly’s statement after her references, there are risks and benefits to each of the treatment.
    Shirley

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