[staceylee123]

#1059113

hi ive had graves since 2004, i was put on carbimazole and went into remission after 18 months, in 2008 it came back, i was put on carbimazole again and it went away again, so i got pregnant with my 2nd child, it came back and i was put on ptu in 2009, by 2010 it was better again , but it came back very bad in 2011, i was out on carbimazole which made me feel ill, then ptu which worked great except in lowered my wbc, so here i am now back on carbimazole which has lowered my levels enough to have (A) radio active iodine which i opted for or (b) surgery heres my problem since going for this option ive heard of a lot of people who developed cancer or lukemia after having the radio active iodine, so now i need some opions and storys about others to help me dicide what to do, sorry it was such a long post p.s my doc says staying on atd is not an option because when my levels went up this time they were too high and hard to get back down thank for reading

[adenure]

#1172248

Hi Stacey

I’m sorry you’re dealing with all of this; it’s no fun, that is for sure. Congratulations on having 2 children though- a beautiful blessing. I think most people will tell you that you have to decide what is right for you, your circumstances, and what makes you most comfortable. Both surgery and RAI have risks; I’ve gone back and forth for a month now. I was on methimazole (like carbimazole), but it was hurting my liver, so I had to stop and make a more permanent decision. RAI just didn’t sit well with me (even before I knew the methimazole was causing me problems). So, finding a surgeon was what I wanted. I am still as nervous as all get out. My surgery is scheduled for June 15th. I’ve managed to stay stable thyroid wise for a month off the methimazole; so, I hope to hang on 2 more weeks. Take time to research your options and then do what sits best with you as long as you are a good candidate for the option you want. My endo. wanted me to do RAI, but he does support me in choosing surgery. I don’t know much about cancer probability from RAI; I don’t think it is very high. I know for my situation (because I’m breastfeeding), if I chose RAI, I had to wean, stop lactating and be dry for a few months before they’d treat me bc of the possibility of the radioactive iodine pooling in breast tissue and causing breast cancer, but that is a different circumstance. I think RAI is considered pretty safe for most people. The links to the treatment options on this website are thorough and helpful. I’d check them out and talk with your doctor, then do what feels right to you.

Alexis

[snelsen]

#1172249

Hi stacylee,
your post is not long! (:
Alexis gave you some things to think about. If you use the search engine on this site, you will see that when we have a choice, and we usually do, we make a decision sooner or later. Clearly, ATD’s are not your option. Sounds like you have chosen RAI. And also seems that you may have read some unreliable websites for your other concerns. I think your concerns for developing cancer or leukemia are not justified. I suggest if you want to research it yourself, put the words “evidenced based studies, RAI and cancer, and RAI and leukemia. I do not think you find valid evidence for either one of your concerns. Although I chose surgery, RAI is done all the time in the US, very successfully.

Basically, RAI is a TREATMENT for thyroid cancer, not a cause.
Kimberly will probably read this, and may have some ready references for you.
I also suggest making an appointment with the nuclear med department, and/or a radiology doc who is the doc who administers RAI.
Shirley

[NLBatten]

#1172250

I agree with Shirley. I did a lot of research and never saw anything that said RAI could lead to cancer or leukemia. It is something they have been using for over 50 years and have very good results with. The treatment options info in this forum are very good. They helped me reach my decision for RAI and while I am only 3 months out, I don’t regret it.

As Shirley said, we all have to reach our own decision. We are not doctors and cannot substitute for your dr info. We can only give you our experiences, but please do be cautious on too much internet research. You will find a lot of the “experiences” out there (other than on this site) are only from people complaining or upset. As many have said on here, most websites are not made up by people who are doing well and feeling healthy. Except this website. The reason I really like this site is that you see so many positive responses from the moderators and folks like Shirley. Just take what you read elsewhere with a grain of salt and realize once you finally reach your decision, you will have peace with it and just go forward.

Best of luck! Keep us posted!

[staceylee123]

#1172251

thank you all so much for your replys guess im just starting to panic a bit does anyone know if the RAI reduces goitre

[Kimberly]

#1172252

Hello – There aren’t a lot of studies specifically on cancer risk after RAI for Graves’ vs. RAI for thyroid cancer, which involves a significantly larger dose. I posted a few in this thread:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42443/

As for the goiter, you should start to see some improvement once thyroid hormone levels are back under control.

There are success stories on this forum with all three treatment options, so it’s important to research from credible sources and make the choice that you are most comfortable with.

Take care!

[Author]

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