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Who out there has success stories for radio iodine treatment for hyperthyroidism? (I tested negative for Graves Disease and T3 and T4 are normal, but I have benign nodules) I have tried various natural alternative treatments with limited success. So, RAI is now my alternative. By success I mean, normal TSH levels. How difficult was the adjustment time after RAI? Anybody not go hypo after RAI? Thanks.
Hello – Hopefully, you will get some responses, but keep in mind that the process for treating Graves’ disease vs. overactive nodules with RAI is different.
With Graves’ disease, the goal is to give a “fully ablative” dose, meaning enough to destroy all functioning thyroid tissue. These patients will end up hypO over a period of weeks or months.
In patients with a single overactive nodule, the goal is *only* to destroy the nodule, leaving the remaining gland intact.
Interestingly, a recent article in the New England Journal of Medicine noted that about 5% of patients who are treated for overactive nodules with RAI end up developing Graves’ disease. It is believed that antigens released by the damaged/inflamed tissue can potentially trigger antibody production.
Kimberly,
Well this is disturbing and upsetting information. 5% sounds significant. I’ll have to ask my endo about it. Over the next few days, I have to decide if I prefer RAI or surgery. The surgeon has told me that he would remove one lobe of the thyroid and MAYBE my body can handle functioning normally with just the other lobe. It’s a 50/50 chance. I don’t know what I’m going to do given the risk of surgery and risk of vocal chord damage during surgery.Kimberly, can you tell me which issue this article is in for the New England Journal of Medicine? Thanks.
Hello – Here’s the reference info; the author is Dr. Douglas S. Ross:
New England Journal of Medicine 364;6 nejm.org 542 february 10, 2011
This is for Kimberly, online facilitator:
Regarding this 5% of hyperthyroid patients that get Graves after RAI. I just spoke to my endo (who has a large thriving practice) and he said that he’s never seen that happen in his patients. He also pointed out that this 5% was "reported" in NEJM but no other studies confirm the 5%, so one single study is not all that significant.
The subject of my post is "SUCCESS" stories with RAI. Did you think your post was a success story? Your comment was actually quite negative and presented like a scare tactic. It’s irresponsible to shoot out thin statistics without some disclosure of the protocols of the study. Professionals know this. You didn’t even site the issue of NEJM.
It looks to me like you were not advising me at all. Very disappointed in you, Kimberly.
All treatment options have risks and benefits, and as facilitators, we would be doing patients a disservice to only provide one side of the story. The information I shared came from a reputable medical journal, and the reference is cited above.
I’m sure that future posters on this thread will honor your request to only post positive results — however, you are doing *yourself* a disservice to not research both the pros AND cons of any treatment option that you are contemplating.
Kimberly, FYI, I have researched it and am completely aware of the risks and benefits from lots of sources, including clinical trials. I didn’t ask for statistics from studies; I asked for personal experiences. Because perceptions and attitudes are so vital to healing, I want to go forward with this treatment with positive thoughts, successful perceptions, and a strong mind. Fear about negative outcomes will only weaken my resolve and that’s why I asked for successful stories. We are more than just physical bodies, more than this disease. I expect that the facilitators would be able to address more than statistics when offering advice.
I’m surprised that in a month’s time, no one has posted any success stories about radio iodine treatment. My initial RAI treatment went well three weeks ago. I didn’t have any real side effects: just mild headache and some fatigue but this was so transient, I even hesitate to mention it. I’m disappointed that people who have had this treatment with positive results haven’t posted. I know I certainly need to hear that this is a successful and doable treatment. Anyone considering RAI needs to hear positive and encouraging experiences. So far, I have to say my experience has been good regarding side effects. Time will tell about healing and lab test results. Please, if you have a good experience with RAI and would recommend it, please post. Thanks!
Hi HonestBabe,
I’ve been away from the BB for a couple of months, so just catching up. I am absolutely an RAI success story — had RAI, feeling better now. I went through a period of time where my levels dropped out of the hyperthyroid range into the hypothyroid range, I started taking replacement hormone, I’ve had a good doctor navigate my dose to find a good one for me, and I feel very close to the normal I was before, with the caveat that I became older during treatment, so things change simply because of that.
As for why you have not received many responses, I would point out that our issues following RAI would be very different from yours. Your nodule is meant to be destroyed by the RAI and you are meant to return to normal thyroid function afterward.
The goal with our RAI dose is different — we are meant to destroy the entire thyroid and be rendered hypothyroid, then we take thyroid hormone replacement, adjusting doses until we find the one that works best for us. We may have commonality in the fact that we are adjusting from a hyperthyroid state, but again, your body ought to "hold" at normal, where ours goes to "no function," then we build it back up.
I know lots of people who have had success with RAI treatment and are happy with the result. Other than facilitators, not many of them come back to visit the BB, because they are happy with the result and they’ve moved on.
Hi, HonestBabe:
I, too, am an absolute success story about RAI. I went from being hideously ill with hyperthyroidism, to hiking in the mountains. Not all at once, obviously. But over time, I regained my health — and, since I have Graves, my RAI dose was intended to eliminate the majority of my thyroid. My mother had Graves, and RAI, and never had an ill day due to thyroid after her treatment, as well. I have three friends who had to have their thyroids removed due to thyroid cancer. Their doses of RAI were significantly higher than ours, and these friends are also living healthy lives on replacement hormone.
The issues are different, however, with hot nodules. In your case, if I understand it correctly, there is a discrete (sp?) cluster of over-active thyroid tissue cells, and the rest of your thyroid, the healthy part, is essentially shut down (due to the TSH levels being so low). As a result, when someone in your position takes RAI, it is absorbed into the hot nodule cells, not the normal cells (which are shut down). Whether or not you would need to supplement with replacement hormone I don’t know. But there should still be normal thyroid tissue left after the RAI.
I am trying to decide what course of treatement to take for Graves. I have been looking at the pros and cons of Rai and medication, and have been getting conflicting information. So, I have a few questions:
1. Why do doctors in Europe usually perscribe medication and doctors in the US perscribe RAI?
2. How frequently do patients have side affects on the medication?
3. I have read that RAI treatment only affects the thyroid. Then why do we have to stay away from people and follow precautions after having the treatment? I have 2 young children and work with small children and pregnant Moms, so I am worried about this. Also, if others can be affected by the radiation, wouldn’t it follow that other parts of our bodies would also be affected? When I went for the RAI-U test, the radiologist said that after treatment, I could return to work after 1 day. This is different from what I have been reading.
Thanks.Hello – The following is a great article that looks at the pros and cons of the different treatment options. (Note: you will need to use your browser’s "back" button after viewing to return to the board).
http://www.ngdf.org/cms/modules/files/u … 586097.pdf
Hopefully, the following answers will help…
1. I can’t say for sure, but the differences are believed to be cultural. Europe in general seems to be more wary of radiation, perhaps because of their proximity to the Chernobyl nuclear accident.
2. Mild side effects with Anti-Thyroid Drugs (itching, joint pain, rashes, etc.) occur in about 5-10% of patients. More serious side effects (liver and white blood cell complications) are quite rare. WBC complications occur in about 1/400 or 1/500 patients. Serious liver issues on ATDs (deaths or transplants) have averaged less than one person per year since the FDA started tracking "adverse events" in the 1960s, and the majority of these severe complications were associated with PTU, not methimazole/Tapazole.
3. The reason for the extreme RAI precautions is that radiation exposure is cumulative over a lifetime. The acronym that the pros use is "ALARA" — meaning that wherever radiation is involved, the goal is to limit exposure to others to a point that is "As Low As Reasonably Achievable." So the goal is to not expose other individuals unnecessarily to radiation. The American Thyroid Association released some guidance this year on radiation safety precautions. A link is included below; you will need to use your browser’s "back" button after viewing.
Thank you to all who posted. I think it’s really important to hear positive results to RAI (even though my case is different from others on this site, as you point out). It’s such an important decision when choosing RAI or considering surgery or medication. I avoided RAI for a long time because of fears. Sometimes the best thing to do is confront the fear directly and sort out the values of cure and risk. Four weeks post RAI, my TSH levels are at .24 so the radioactivity is still doing its job; I’m half way away from normal levels. I feel fine. Still a bit hyper but nothing dramatic or intrusive. I wish everyone an easy ride!
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