# Within 3 weeks will have RAI



## Want2FeelGood (Sep 17, 2011)

In three to four weeks will have my first RAI treatment. In August had a TT for bilateral PTC. I might get Thyrogen. Is there anyone who did not have side effects from Thyrogen or from RAI ? Any good reports ?

So many reports of side effects from the Internet.

Are the people who do well just not reporting ?


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## Andros (Aug 26, 2009)

Want2FeelGood said:


> In three to four weeks will have my first RAI treatment. In August had a TT for bilateral PTC. I might get Thyrogen. Is there anyone who did not have side effects from Thyrogen or from RAI ? Any good reports ?
> 
> So many reports of side effects from the Internet.
> 
> Are the people who do well just not reporting ?


I don't know what LID is (D for diet, I assume) and I don't know what PTC (papillary thyroid cancer? is my guess?) is so if you could enlighten me? LOL!! Us old folks don't get the acronyms too well.

Welcome to the board.

We have plenty of members here who have had RAI; not sure about the thyrogen.

I am so sorry you have had to go through this but it sounds like you have had some excellent medical intervention for which I am glad.

Hopefully others will be along to share their first hand experience!









Thank you for hopping in! Welcome!


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## Octavia (Aug 1, 2011)

I had PTC (Papillary Thyroid Cancer) and two thyroid surgeries earlier this year. My RAI was in May...no side effects whatsoever. None. The LID (Low-Iodine Diet) was far worse than the RAI for me!

As for the Thyrogen... check with your doctor - he/she may not be able to actually get it. It's been in very short supply for quite a while, and most patients can't get it. The alternative (as you probably know) is to stop taking the thyroid replacement for a few/several weeks prior to the RAI. So if your doc can't get the Thyrogen, you would need to stop your thyroid hormone now.

Yes, the Internet has all kinds of lists of possible side effects, but many people don't have any.

Here's one of my favorite RAI sites:
http://www.thyroid.org/patients/patient_brochures/radioactive_iodine.html


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## Want2FeelGood (Sep 17, 2011)

Thank you. Yeah--- don't know if he can get that Thyrogen stuff. What was your dose of RAI ? You didn't get altered taste or dry mouth ?


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## Octavia (Aug 1, 2011)

Want2FeelGood said:


> Thank you. Yeah--- don't know if he can get that Thyrogen stuff. What was your dose of RAI ? You didn't get altered taste or dry mouth ?


My dose was 100 millicuries. I drank it through a metal straw out of a metal cup. I did not get altered taste or dry mouth. Or maybe it was so minor that it wasn't even memorable.

Do check with your doctor on Monday about whether you'll be able to get the Thyrogen, because if you can't, then he/she should instruct you to stop taking your thyroid replacement hormone. The purpose of that (and/or the Thyrogen) is to increase your TSH (Thyroid Stimulating Hormone). For most of us, it needed to be above 35 (normal is below 5). If you can't take the Thyrogen, it may take a few weeks without hormone to get your TSH up that high, and they won't do the RAI without a high TSH.

Good times.


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## CLRRN (Jun 22, 2011)

Want2FeelGood (love the name!!)

I'm scheduled for RAI on 10/13. I will stop Cytomel on 9/23 and start the wonderful low iodine diet (LID). I'm not sure of my dose, I guess I will find out on the 13th. Due to the shortage of thyrogen, I'm going "au nautrel" and praying and keeping everything crossed that my TSH is high enough after being off meds for 2+ weeks. I get my labs done on 10/7. 
Like you, I've read stories about side effects of thyrogen but I've also read about "hypo hell" and those side effects are scary too. I know we are all different and I'm going to get plenty of rest and stay positive 
Stay in touch!!!

Chris


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