[Brucelee42]

#1018036

Hello,

I was wondering if anyone could point to resources that cite success stories with RAI? My wife has graves and she is Hyperthyroid and is scheduled for RAI next week. She is terrified of it because of what you find on the net. But she also terrified of the medications. We are on our second endicrinologist, and she seems quite good, but no matter how much she reassures her, the negative stuff still outways. She knows she cant keep doing nothing, but feels stuck.

Any advice would be appreciated. -Thanks!

[Ski]

#1062339

The actual scientific studies on RAI abound with success stories ~ it’s typically the sites that are trying to sell other (non-proven) treatments that will loudly tell stories about failures (not all of which can be believed, if I’m being honest).

I am an RAI success story. I’ve been on this site since 1998, and I can tell you that I’ve seen COUNTLESS success stories here. Just do a search on the term "RAI" and I know you’ll find a lot of good information. I had RAI and am now successfully managed on replacement thyroid hormone. It takes a while, even under the best of circumstances, but it’s a situation of getting "closer every minute" and feeling better all the time.

The truth is that RAI is one of the three, proven-successful treatments for Graves’ Disease. It’s good to have information, certainly, but make sure you are looking at CREDIBLE information. Remember that anyone can pay for an internet domain and paste anything they want in those pages ~ there is no rule that what they post must be truthful. Look for sites that are affiliated with respected medical organizations (as ours is).

Bottom line ~ RAI is effective and safe for Graves’ patients. Remember that thyroid cancer patients receive RAI doses up to 20 TIMES what we get, and even that is considered a safe dose for the patient’s future health. Even so, if your wife remains uncomfortable with the idea of RAI, and isn’t interested in trying meds, then surgery is still one more viable option. Each of our treatment options carries pros and cons, which makes it somewhat harder to choose (especially as we are in the throes of anxiety from hyperthyroidism), but we are SO LUCKY to have three potential treatments that are all proven and can return us to health. No "negative" for any of the treatments is worse than remaining hyperthyroid, which can be fatal if left untreated.

Please let us know how she’s doing! Send her over, let her read some of the conversations we’ve got going on, I hope it’ll help. We’ve all been through it, so we understand.

[Brucelee42]

#1062340

Thanks! I will do that. She is still concerned and thinking about trying to treat it naturally. (while being on the MMI perhaps) Don’t know. Her biggest fear is she does this and it turns out not to be what is making her feel bad.

[Ski]

#1062341

There really is no "natural" way to treat this ~ believe me, we understand, we have all gone through it (it’s the "negotiation" part of the grief process, as we grieve for our former, healthy selves…). If there were a proven method for taking care of this naturally, believe me, we’d shout it from the rooftops. No one wants it more than we do, but we are in close touch with the medical professionals in this field, and to date, nothing meets our needs that can be classified as a "natural" treatment.

Hyperthyroidism is debilitating, and while it’s possible she’s got something else going on that needs to be dealt with, she MUST get the hyperthyroidism under control as soon as humanly possible. Untreated (or undertreated) hyperthyroidism can lead to thyroid storm, which is an ER event and very frightening. Thyroid storm can be fatal, can lead to lifelong issues from the damage it creates, and can come on suddenly. It’s rare, but there’s no sense in tempting fate.

ATDs (PTU or methimazole), RAI or surgery are the ONLY methods that can successfully bring down thyroid hormone levels. That’s just the way it is.

[Brucelee42]

#1062342

Thanks. We are all too familiar with the storm. I don’t know if she had a "complete" storm, but she did have her heart rate shoot over 200 beats a minute on a chance visit to the ER. We were lucky we were there I guess. I hope to have her check out the site tommorrow, she hasn’t been ready to check it out yet.

As of now, the plan is still going forward for tuesday. She is just wrestling with the feeling that she shouldn’t do it. She knows that she needs to, but its that inner voice that bugs her. Hopefully she will have some insite when she looks at the messges here from folks like yourself.

Thanks again!

[Bobbi]

#1062343

Just to add another voice — I am another RAI success story. And, like Ski, I know lots of other folks who had success with it, as well, including my own mother. In addition, I happen to know four or five people who had thyroid cancer, who have had much, much, MUCH larger doses of RAI than we get, and they, too, are well again. Properly used, RAI is a useful medical tool.

[Brucelee42]

#1062344

Thanks all, your feedback is helping. My wife is feeling a little bit better but she keeps finding the horror stories and starts freaking out again. Her concern now is the eye issues. She has some of the eye symptoms now, no bulging, but deffinately dry and red. Her dose on tuesday will be 18 mci.

Just some history. Her last labs were ultrasensitive TSH .094, Free T3 3.8, and Free T4 1.29 (taken 3/24) On 3/10 her levels were ultrasensitive TSH .323, Free T3 3.4, and Free T4 of 1.33. Some of the older numbers – After taking PTU for about a month, on 1/21 her TSH was 1.91, T3 was 106, and Free T4 was .82. On 1/28 TSH was .6 and T3 was 119, and Free T4 was .92. When they first found out about it they said her TSH was 0. It was shortly after that that she had her incident in the ER which was when she was put on the PTU. While she responded well to the PTU, she went hypo for a while, which is why they stopped it, it made her feel terrible.

She was scheduled to have the RAI back at the end of february, and a few days before the proceedure we were visiting with the Endo and she said that Kimberley deffinately had to have it done. That her thyroid was "trying to kill her" she had us do one final set of labs. I don’t remember what the numbers were, but the Endo called and said she cancelled the proceedure. She said the numbers were fine and she couldn’t do the RAI if her thyroid was acting ok. Thats when we decided to get a second opinion.

Kimberley hasn’t been on any thyroid meds since january, only digoxin(spelling?) for heart rate if it gets above 90bpm. Since then, her hairloss is comming back, anxiety is through the roof, and you feel her body heat (even though there is no temp)

When she first came to America almost four years ago, she did go through a period where she gained quite a bit (don’t know if it was the proportion sizes here) and couldn’t loose it. Then in december of last year when all of this started, she dropped the weight without even trying. She is curious if she has the thing were you go back and forth between hypo and hyper as your thyroid starts to fail. She does have the antibodies that point to graves. I think in her mind she feels that there is so much uncertainty, and thats why she feels like she does about the RAI.

She did day say yesterday that she knows she cant continue like she is, but worried about getting worse before getting better, because she is at the edge now.

Anyway, thanks again for your support and insight. Hopefully she will be feeling better soon!

[Kimberly]

#1062345

Hello – I just wanted to add that your wife might consider asking her doctor about eye issues prior to the RAI. Some docs will recomend a course of prednisone along with RAI, which appears to have some impact in reducing the risk of eye complications. However, prednisone certainly comes with its own risks…so this is generally reserved for patients who have significant eye issues such as bulging, swelling, and double vision. It’s certainly worth asking, though, if your wife still has concerns.

By the way, you certainly aren’t guaranteed a "free pass" from eye issues — even if you select a treatment option other than RAI. There are members on this board who can attest to that! And the studies are somewhat conflicting on the link between eye complications and RAI. However, this *is* an issue to be aware of. The studies that do conclude there is an increased risk of eye complications with RAI note that the worst outcomes tended to happen in smokers…so hopefully, your wife does not smoke.

Interestingly, one study concluded that RAI did *not* increase the risk of eye complications *if* the patient was not allowed to go hypOthyroid after treatment. So it’s important that your wife get periodic labs after the RAI treatment — and that she be on the lookout for symptoms of hypOthyroidism, including fatigue, weight gain, joint pain, constipation, cold intolerance, and slow pulse.

Best of luck!

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