# Second opinion agrees - Graves



## diva_alicia (Jun 18, 2012)

So now I'm thinking treatment. None of the three options (anti-thyroid, RAI, or surgery) sound appealing. I have read of so many of you having trouble regulating even after/during treatment. Both of my endos recommend RAI, but my father had leukemia and a stem cell transplant and frankly, I can't imagine ingesting more radiation than I had to for my uptake and scan and increasing my risk for blood cancer. I'm just not ok with it. And I know some folks have to do it more than one! I have a coworker who "burned" in her throat and chest for six months. I'm leaning toward surgery but everyone is looking at me like I'm crazy. But I'm the type of person if I get diagnosed with breast cancer, I'm opting for double mastectomy - I'm quite a worrier and carrying the fear with me is terrifying. I fear I'd being thinking about the possibility of blood cancer after RAI nonstop. Please help.

1 - Does RAI destroy your entire thyroid or just part of it?
2 - Have you developed other auto-immune disorders beyond Graves?
3 - I can't find statistics of secondary cancer from RAI - can you point me to it?
4 - How long has RAI been used as treatment - are there stats on secondary cancers?
5 - Who decides if during surgery you remove part of all of your thyroid?
6 - Do you have to take anti-thyroid meds prior to surgery, and if so, for how long?
7 - Can you "choose" surgery as your treatment or do you have to fit a certain profile?

Ugh.

Thank you.


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## diva_alicia (Jun 18, 2012)

AND

My eyes are not bulging but feel like seasonal allergies - itchy and sometimes a little blurry. Should I see an ophthalmologist and if so, can they help me or is that unnecessary?

Thank you in advance!


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## webster2 (May 19, 2011)

Hi,

I have had the surgery twice. I was so glad the first time RAI was not an option as it scared me more than the surgery. The second time, it was up to me and I took surgery as I'd been through it and it is not that bad.

I think you should see an opthamologist to get a baseline exam.

I had the surgery a year ago this month, and I feel great.

Sorry I don't have any RAI answers for you. I am sure you will receive many answers. Best wishes to you in making your decision.


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## Octavia (Aug 1, 2011)

I would say absolutely yes, you should see an opthalmologist...but not just any opthalmologist. You should see one who is experienced in treating/watching patients with Grave's disease.


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## Andros (Aug 26, 2009)

diva_alicia said:


> So now I'm thinking treatment. None of the three options (anti-thyroid, RAI, or surgery) sound appealing. I have read of so many of you having trouble regulating even after/during treatment. Both of my endos recommend RAI, but my father had leukemia and a stem cell transplant and frankly, I can't imagine ingesting more radiation than I had to for my uptake and scan and increasing my risk for blood cancer. I'm just not ok with it. And I know some folks have to do it more than one! I have a coworker who "burned" in her throat and chest for six months. I'm leaning toward surgery but everyone is looking at me like I'm crazy. But I'm the type of person if I get diagnosed with breast cancer, I'm opting for double mastectomy - I'm quite a worrier and carrying the fear with me is terrifying. I fear I'd being thinking about the possibility of blood cancer after RAI nonstop. Please help.
> 
> 1 - Does RAI destroy your entire thyroid or just part of it?
> 2 - Have you developed other auto-immune disorders beyond Graves?
> ...


Your choice of surgery is absolutely on target in my humble opinion. This way you can have pathology report to make sure you don't have cancer.

Listen to your instincts on this one; never mind what others have to say and that includes me. LOL!


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## joplin1975 (Jul 21, 2011)

As far as I can tell, there are very spotty stats/studies on the link between RAI and other cancers. I see stuff about a relationship between breast cancer and 
leukemia, but most of the time it's outdated or inconclusive. So, while I admit I could be totally wrong, I don't think you'll find lots and lots of definitive information regarding RAI and secondary cancers.

It is my understanding that if you opt for surgery, they would remove the entire thyroid.


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## rkh3 (Feb 27, 2010)

I was diagnosed with Graves in 2/10, stayed on varying doses of methimizole until we tried remission, didn't happen, then methimizole really didn't control the levels anymore. Since I have eye involvement, yes you need to see an opthomologist who is familiar with Graves, RAI was not an option. I had the choice of staying on methimizole and have symptoms poorly controlled and risking liver damage or infection or surgery. For personal reasons I postponed surgery until 5/25/12. The procedure went fine, my endo is still playing with synthroid dosing, went really hypo afterwards, but I now feel sooooo much better than before surgery. 
Go for it you'll be glad you did. One piece of surgery advice, find a surgeon that has done multiple total thyroidecomies. My surgery was very complicated, a vocal cord nerve was wrapped around the thyroid, but aside from some resulting minor voice issues, no bad side effects.

Footnote: no malignancy, I feel for those that weren't so lucky.


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## Lovlkn (Dec 20, 2009)

If you have any eye involvement at all you should opt for surgery.

Look for a surgeon who removes at least 4-5 thyroids a week.


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## JPGreco (Mar 2, 2012)

Hi Alicia, I'm James and also have Grave's disease. I recently underwent RAI treatment and I'm about a month and a half out from the dose. Waiting on my most recent blood test to see if my levels are still dropping. As for your questions I answered them in red following each question.



diva_alicia said:


> 1 - Does RAI destroy your entire thyroid or just part of it?
> _It depends on the dose. Generally though, the goal is to get you hypo since trying to get you normal is very difficult with RAI and the fear is always not using enough._
> 2 - Have you developed other auto-immune disorders beyond Graves?
> _Sorry, I have no other experiences with Autoimmune diseases other than Graves._
> ...


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## diva_alicia (Jun 18, 2012)

JPGreco said:


> Hi Alicia, I'm James and also have Grave's disease. I recently underwent RAI treatment and I'm about a month and a half out from the dose. Waiting on my most recent blood test to see if my levels are still dropping. As for your questions I answered them in red following each question.


Wow, thank you for taking time to respond to all of my questions. I really appreciate it and am taking your words to heart.


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