[Ski]

#1067852

Hi Nick,

There are lots of RAI success stories here (I am one), and we recently had a thread on this exact topic (positive outcomes from RAI), so take a look for it. If you can’t find it, I may be able to hunt it up and link to it, but I’m stopping in for just a moment right now (working today and getting ready to travel, on my way to a reunion and then the Graves’ Disease conference in Charlotte!).

Negative outcomes for RAI typically have more to do with difficulty getting regulated, or feeling badly at the "normal level" when a doctor proclaims "you are WELL," and you are not well. Your normal POINT in the enormous normal RANGE is what you need to find ~ the goal afterward is not just to clear your levels into the normal range and then celebrate. Again, lots of posts on this topic here, look around a little and I’ll bet you find them. It’s a process, and it’s worth drilling down to find the precise point at which you feel great, because it’s all about how you will feel every day from now on.

Typically we need to stay away from people (at least six feet away) for the first 48 hours, due to the fact that our body is flushing out the RAI that is NOT taken up into the thyroid (through our fluid waste channels, urine mostly, but also a little bit in sweat and saliva), and we don’t want to expose anyone to even a little bit of that. It wouldn’t have an enormous impact, but always better to be cautious. Once that period of time has passed, you just need to be aware that cuddling your little one up to your neck needs to be kept to a minimum for some period of time ~ the half-life of I131 (the treatment isotope of RAI) is 8 days, so every 8 days, the amount that’s in your body reduces by half. First, look at your dose (10 millicuries), then look at your uptake percentage (let’s pretend it was 75%, for purposes of working this out). That would mean that, after the first 48 hours, your thyroid would have retained 7.5 millicuries of the RAI. After six more days (the 8-day mark since the dose), your body would retain 3.75 millicuries of RAI. After 8 more days, your body would retain …. (calculating, calculating) about 1.9 millicuries. In this way you can keep a kind of tally as to how much remains in your body, and you can limit your son’s exposure accordingly. At first, make sure that if you cuddle him tight up next to your neck, it’s for very short periods of time. As the weeks pass, you can relax and keep cuddling for longer.

LOTS of information here on just this topic, so I’m glad you found us! Good luck with your RAI ~ remember, it’s been used for 60 years, effectively and safely. Thyroid cancer patients routinely receive doses 10 or 20 TIMES what we do, and it’s still considered safe.

Remember too ~ it won’t have a rapid effect. Everything with Graves’ takes time, but at least you know you’ll be rid of the future "spikes" in thyroid hormone like coming out of remission.

[npatterson]

#1067853

I won’t repeat what Ski wrote, but I will tell you that my RAI was successful. The only thing I remember is that it was 8 millicures. I left work at lunch, had the treatment (being in the lead-lined room was wierd), and going back to the office for four or five more hours of therapy. I didn’t cuddle my cats, and my husband stayed on his side of the bed, and that was it. I worked the rest of the week.

You may find that your fear is MUCH worse than getting the treatment–it was really anti-climactic (sp)

Take care,

[Nick]

#1018918

Hi everyone,

I have been diagnosed with GD ~10 years ago. I have tried the medications (TAP and PTU) and they work well for a while, I get into remission then I am back in the hyper land. This has happened 3 times so far, so I have finally decided to do the RAI. I have heard in the past lots of bad stories about RAI. Anyone had some good news to share? I would really appreciate to hear some positive outcomes after RAI.

Thanks

[runlacie]

#1067854

Hi Nick! Ski gave you great info- esp about finding a doc who will work with you to find YOUR normal. I can tell you that I have had issues with heart palpitations and VERY BAD PVC’s all of my life. I never connected them with a thyroid problem since my levels were always in the normal range– BUT now as I look back at my medical records and my thyroid results, I can see that my pre-Graves tsh has ranged from 1.1 to 4.3– up and down like a yo-yo with no rhyme or reason over the past 17 years. My PVC’s have been bad enough that I have been hospitalized for observation and had every heart test under the sun only to be told my heart is fine and they have no idea why I got them. Every couple years the palpitations and pvc’s would rear their ugly head and send me into heart anxiety. Now, looking back, I’m sure my thyroid has been whacked from the start and MAY have played a part in the heart symptoms. I’m a runner (running actually helps my palpitations, go figure) and started noticing my HR increasing back in February. By early June I couldn’t run at all because my HR would skyrocket after just a few steps. Finally went to the doctor- tsh less than .0005 and then all the other tests said Graves’. I did the rai thinking it would be the quickest route to running again. Had 7.3 mci on 7/20 and am now hypo and taking 50 mcg Levo (which I don’t think is enough, but we are still working on that). I was not put in any lead type room- the technician sat right next to me and handed me my pill. I did not have much in the way of restrictions- I have a 7 y/o and was just told not to sit directly next to him (or anyone else) for extended periods of time during the first 2-3 days. Like it was okay to sit in the same room, just not right next to him on the couch. And it was okay to hug him, just don’t let him sit on my lap for a long time. It was okay to prepare meals as long as I washed my hands first (duh) and was careful not to spit in the food (double duh). Kick the DH out of the bed for 2 nights (and he ran for the spare room thinking I’d glow or something). And I hate to speak too soon but my PVC’s have been absent. Completely. Totally. Absent. Will I be cured from them? I guess I won’t know that yet, since they seemed to run in yearly cycles- but right now I’m pretty happy with the way things are going. And I can run again. I have been a little sad, weirdly sentimental, about killing my poor old thyroid– but I still think this was best for me. Best wishes to you… and keep us posted!

[Nick]

#1067855

Thank you all for sharing your personal stories.

Nick

[elf]

#1067856

My dose was 10 mci, too – almost 4 years ago. I don’t remember what my uptake result was like but the dose did render me hypo after 5 months. I think that "20-30% within a year" estimate sounds very low, – so far my 5 months is one of the longest I’ve read about, and a smaller percentage of people needs second RAI – so the majority become hypo.

I had a baby and a toddler when I had RAI, and I was away for almost 2 days (came home at the end of the second day). Then took precautions for a couple of days around my kids (which was harder to do than with a 5yo who you can explain).

I think the idea of stopping ATD is to have your thyroid as natural as possible, to get all the advantage of RAI. Your thyroid will take only as much iodine as it can (as the uptake scan showed), not more, even if you haven’t taken any ATDs at all. I think I stopped PTU a week or so before, can’t remember. I remember that I had to re-start half of my PTU dose a couple of days after RAI, for a week or so – to probably soften the possible dump (which didn’t happen to me until 3 months after anyways). But some people on here don’t have any ATDs after RAI, so maybe the protocol changes over time.

Good Luck

[Bobbi]

#1067857

Hi:

I had to stop PTU one week before the RAI. But I may have been on a much bigger dose (I no longer remember those types of details, it has been so long). I was given 8 millicuries. I was hypo within two months and started on replacement hormone.

I remember being scared at the time, so I empathize with your feelings. The treatment was, however, a bit of a "let-down" after all the stress I put myself under before going into it. I just swallowed a pill. For a week or so, I had a sore throat, but not so sore that I needed medication. (Others have reported more soreness than I experienced.)

About one week after RAI, we go through a period of more intense hyperness, as dying thyroid cells release stored supplies of hormone. But these cells are not making "new" hormone, so this period of being more hyper than usual only lasts a few days.

RAI gave me back my health. I wish you the same, good results.

[Bobbi]

#1067858

A P.S. that I forgot to mention:

To my way of thinking, the whole point of RAI or surgery is to make us go hypothyroid. Trying to get us to "euthroid" levels of hormone is a shot in the dark. It sometimes happens, but it is impossible to accurately achieve it in any significant percentage of cases. This is due to the fact that our disease makes changes in thyroid levels so erratic and also because the doseage levels for RAI, while based on some type of math, are not yet an exact science. So, our doctors typically give us enough RAI so that we cannot become hyperthyroid again (i.e. we go hypo). This is called "ablation" of the thyroid.

Replacement hormone is used to raise our thyroid hormone levels back to normal, so that we are not hypo for long.

Good luck,

[Nick]

#1067859

I know what you are saying and I agree totally. I just cannot understand how the outcome in most studies is different from the experience of the people involved with the bulletin board.

Bobbi wrote:…the whole point of RAI or surgery is to make us go hypothyroid. Trying to get us to "euthroid" levels of hormone is a shot in the dark. It sometimes happens, but it is impossible to accurately achieve it in any significant percentage of cases…

[elf]

#1067860

One of the best explanations of why the idea of achieving Eurothyroid status has consistently failed, was given by Ski in another thread recently (well, at least for me it all finally fell in place in my mind):

Ski wrote:Hi Trey,

You probably will have found this info already, if you’ve been wandering around the bulletin board, but I just wanted you to know that the theory that we can take "just enough" RAI to "control" the thyroid hormone levels has been tried and has consistently failed. The reason is that any surviving thyroid tissue has the potential to react to the antibodies and cause hyperthyroidism again, given the proper "request" from the antibodies. The antibodies mimic TSH and trick the thyroid into believing the body needs more, more, more thyroid hormone, so the thyroid cells work as hard as they possibly can to follow those instructions, and ultimately that results in hyperthyroidism again. In addition, a dose of RAI insufficient to destroy the entire thyroid has the potential to damage, but not destroy, thyroid tissue, which can be dangerous in and of itself. Damaged cells behave irrationally, so it can be tough to manage thyroid hormone levels when *some* cells remain active.

I had too little RAI on my first dose (10 years ago ~ thought it’d be my ONLY dose, but no), because the dosing doctor still felt it was possible to do "just enough." Instead, I ended up with my endo recommending ATDs in the same protocol as if I’d chosen them in the first place (1-2 years to attempt remission), which was what I was trying to avoid by doing RAI. Ultimately I did a second RAI that did the full destruction, but I suffered for a couple of YEARS trying to "wait it out, let the thyroid die on its own," when I could’ve been healthy instead for most of that time.

If you’re going to try the medication, you can "undo" that decision, so that’s typically what we recommend, at least to start. Some people react badly to the medication, or have a tough time maintaining normal thyroid hormone levels, and so eventually those people must choose another treatment method. Some just decide they don’t like how they feel, or don’t want to deal with the process required to make ATD treatment work for them. Some have a VERY easy time of it on ATDs and continue taking them very long term. Some attain remission and can stop worrying for a while ~ of course, that’s after at least 1-2 years of taking the ATDs, but remission is remission. If you try ATDs and decide they’re not for you, the best choice is to get rid of the thyroid completely, whether it’s by surgical removal or RAI destruction.

Remember that you’ll need at least six weeks after you begin ANY treatment in order to start feeling much better, because it takes our bloodstream that long to flush out excess thyroid hormone. Patience is required in all things Graves’, that’s a fact.

We’re so glad you found us! Let us know how it’s going, and feel free to ask any questions you may have. We’re here to help.

[Author]

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