[enough3]

#1067227

You have some understandable concerns and good questions. You have come to the the right place, as I’m sure you will get many responses with good info.

As for me personally, my dose of RAI was 15. My uptake was 85%. I tried remission for two years on ADT’s…and that was way too much drama for me. I had to come off ADT’s for 3 1/2 weeks prior to my uptake. My labs ended up in normal range..but my uptake was seriously high (as your daughter’s). My ultrasound showed solid and cystic nodules ALL over the thyroid and a huge goiter. My goiter is so large that you can actually see it on my neck. I have NO eye part of Graves.

My RAI went great. My goiter did swell up really bad…but I felt fine. It is starting to go down…I’m almost 3 weeks post.

25 is a high dose for RAI….but not crazy high. Thyroid cancer patients receive A LOT more than that. I’m sure your daughter will be fine.

I DO NOT regret RAI….and went running today for the first time and felt COMPLETLY normal:) Glad I made the decision to go through with it.

[Bobbi]

#1067228

If your daughter had the uptake and scan, the nuclear med doc does not need to feel her thyroid to know how big it is — that already showed up on the scan.

It does sound like the nuclear med doc was less than diplomatic. But given the information at his/her disposal, the dose calculation may indeed be somewhat automatic. Or he may have reviewed your daughter’s results prior to the conversation and arrived at his calculations before you asked the question.

But, no the typical goal is not to try for euthroid. That is incredibly difficult to achieve. And when it falls short, the patient remains hyperthyroid. Even if it IS achieved, it does not mean it is permanent. The disease is caused by antibodies — and antibody levels rise and fall for no well-understood reason. The only way to prevent hyperthyroidism again is to "ablate" — i.e. destroy enough cells to render the patient hypothyroid. Then, a dose or replacement hormone is used to balance us out.

[babs]

#1067229

Thanks for your quick responses. And glad to hear that you are doing so well post-RAI enough3 – my daughter, too, has had "enough" after a year and a half and is ready to take this step – just doesn’t want any more radiation than is necessary. I know it isn’t much compared to cancer patients – but if others are having success with 15 mCi (as research has also shown) – I don’t see why 25 would be a fixed dose.

Wish we had more faith in this Nuke doctor – but we just don’t….I’m sure he knows what he is doing – and probably is just not used to people being informed and questioning him. And yes – I saw that they marked on my daughter’s neck so that the size of her thyroid could be seen on the scan – but he wasn’t able to tell us anything about the size when we asked – it was weird. Almost seemed like he just saw the 91% uptake and didn’t really look at much else about her scan.

Thanks again for your comments….

[babs]

#1018801

So – we really need advice – and to hear about others’ experience with this. What dose of RAI were you given? What were the results of your uptake scan? Do you know how your Nuclear Medicine doc figured out how much to give you? Did they use a fixed dose – or did they figure out the dose based on your uptake scan, size of your thyroid, etc. ?

We went yesterday for my daughter’s uptake scan – and to discuss her upcoming RAI (we decided to do it over Christmas break rather than yesterday). When the Nuclear Doc came in to share the results he told us what her uptake was (91% – one of the highest they had seen….) and started talking about scheduling her RAI. When I asked about the size of her thyroid he said that it didn’t matter – and he had no interest in feeling her thyroid or discussing this! I asked him if he could please feel it and see what he thought (it is visibly enlarged – we were wondering about it pressing on her vocal cords since she is a singer). I then started to get worried about how this guy was going to figure out her dose when he was not concerned with the size of her thyroid. I asked what her dose would be and he said, matter of factly, "25 mCi" as though it was his standard response. That seemed like a high dose to me. When I asked about this, he said the goal was to make my daughter hypothyroid. That is not our goal – although we know that she will likely end up there eventually. Isn’t it the goal of Endos/Nuclear Medicine docs to have the patient be within the normal range, if possible?

So, are Nuclear Medicine docs no longer dosing these days based on the patient – using the formula that incorporates the size/weight of the thyroid and the results of the uptake scan? Are docs using "one size, fits all" dosing now? The research that I have read seems to suggest, if the doctor is going to use a fixed rate dose, that it be in the range of 10 mCi – or 15 mCi at the most. 25 mCi sounds like overkill to me.

Thoughts, suggestions, advice?

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