# Was RAI the right decision for you?



## dibdab (Jul 3, 2013)

I am due to have RAI for Graves as soon as my levels get within the correct ranges - however having searched on the internet I have found loads of people who say they regret having it as have experienced many after effects.

This has worried me as my doctor told me it has no lasting effects - I said to him that I have found some people who said they have had problems but he said there are only temporary effects and people who were having long term issues must be having them for different reasons.

I have struggled to find success stories so I am concerned now that I am jumping into this and might regret it later.

Has anyone been happy that they have had it?

My husband and I were going to start trying for a baby at this beginning of this year and then the thyroid problems started so obviously that has been put on hold, however I really want to get back to 'normal' ASAP so that we can take our lives off hold. It is always at least 6 months away due to planned RAI and this keeps getting pushed back as my levels aren't right.

I am not sure which treatment option will be best in terms of being the quickest to resolve things and the least long term side effects. I guess this varies from person to person. And I know that there is no quick fix.

I don't really like the idea of surgery as my thyroid is quite enlarged and I am worried that other damage could be caused such as vocal chords or parathyroids. I also don't really like the idea of staying on ATDs long term. So given that my doc said that the RAI was a nice risk free option I was going for that but am now not loving that idea either!! :-(


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## Lovlkn (Dec 20, 2009)

I did my research as well and found a website where most ppl who had RAI had complications, mainly exacerbation of eye issues or multiple RAI events. My main concern for you would be having to have multiple RAI's and small children who could be at risk of exposure.

I opted for surgery knowing I would immediately become hypo ( and I also had 2 small children at home) - with RAI you do not necessarily and the risk of a 2nd treatment knowing you are planning for a family would be reason enough to choose surgery over RAI.

If you have any eye involvement at all surgery is a better choice.

My opinion is obviously slanted toward surgery -

I have also heard of people who have RAI 1x and are fine - you would be amazed how many people have RAI - it's alot. I sold a boat to a nuclear pharmacist who mixes the stuff up and he said he sends out a ton of it.


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## Prudence (Oct 30, 2012)

I barely had any problem with my first RAI-I had a bit of an achy throat, but no problems besides just feeling a bit wiped out for a little bit.

However, that could be because my first RAI didn't completely work-my second RAI was terrible-I had thyroiditis this time around because it was a bigger dose-very painful throat and jaw, a little swelling, tenderness that lasted two weeks, and I also went hypo very quick-the sudden swing was terrible for me.


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## Sixtyplus (Feb 14, 2012)

Have active thyroid cancer cells growing in my lungs. Had first go around with RAI in March, 2012 to try and clean up any crumbs left from thyroid removal. CT Scan in April, 2013 showed rapid growth again so having another go around July 17. Oncologist tells me there is no other treatment available for my type of cancer so, when you look at the options, side effects from RAI are not so bad. I can have a life time total of 800 units; 150 in 2012, 100 in 2013 so 550 left. When I hit the 800 magic number I guess I start counting down......


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## dibdab (Jul 3, 2013)

Thanks to all of you for the replies, it is good to know that none of you seem to have suffered from the long term effects that I keep reading about.

I was planning to have a large dose to take it out completely - according to the sheet my doc gave me it is 550 units. I know it is probably sensible to try the smaller dose but I have only been dealing with this for less than a year (much less time than many people I know so I shouldn't complain) and I just want to get rid of it.

I seem to swing very quickly from over to under and back again as my medication is adjusted so I guess I need to be prepared for a period of underactive-ness.

Sixtyplus - best of luck to you for your treatment, I really shouldn't complain at all when there are people suffering with cancer, I have it very easy in comparison. Keeping all fingers and toes crossed that you will soon be celebrating remission.


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## Octavia (Aug 1, 2011)

Sixtyplus said:


> I can have a life time total of 800 units; 150 in 2012, 100 in 2013 so 550 left. When I hit the 800 magic number I guess I start counting down......


Well, hopefully it won't come to that. I wonder why they weren't more aggressive in 2013 (with a bigger dose), assuming that was AFTER they saw the cancer cells in your lungs. Just curious.

Dibdab, good question (your original post).


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