# New Member... I Just Need Insight



## Jonny Panic (Nov 12, 2012)

So I have Graves', and my thyroid gland is twice the size it should be. My doctor wants to move past medication and go to radioiodine. Questions:

I'm told the numbers for treatment boil down to a roughly ~60% chance the treatment will solve my problem, but with a ~40% chance of resulting in hypothyroidism further down the line. Would it be feasible to request, say, half the dose? I know the numbers don't reduce in a linear fashion... half the dose might have something like 1/8th the chance... but I worry.

I'm told my case is fairly advanced and I may have had it for quite some time. I dislike being add, ocd and very fidgety, but my hyper state also means I think a lot all the time and I like that. It's part of who I am, in that I'm eccentric and spontaneously funny, and I was trying to put together material for a stand-up comedy act. Will treatment change that? Make me a slower person? Less spontaneous?

I used to sing a lot, and was good it it. However, in the last couple years, my throat has tightened up. A recent ultrasound indicates my thyroid gland is about twice the size it should be, but with no nodules, whatever that means. Is the swollen gland what's impinging on my voice? Will treatment cause it to return to normal dimensions? If I asked them to just go with the medication, will that help it return to normal?

I may post other questions as I think of them. It's taken me all night to write this up and I think I forgot something.


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## webster2 (May 19, 2011)

Do you have eye involvement? If so, radiation might not be the best choice.

I am not sure about your voice. I sounded like a teenage boy going through puberty but now am back to normal, although I had surgery.

Once you are settled with the correct dose of replacement, you should find yourself back to normal. I had Graves for a long time before I was treated, and felt miserable for about 2 years before...and now I feel great!

Others will be along that can really discuss RAI. This is a great place to ask questions and receive support. Welcome, and sorry for what brings you here.


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## Jonny Panic (Nov 12, 2012)

I have very mild eye involvement. MY left eye aims vertically downward by an almost imperceptible degree.


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## webster2 (May 19, 2011)

Isn't that wierd? I have minimal eye involvement, and it is my left eye.


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## Jonny Panic (Nov 12, 2012)

Hunh... that _is_ odd. Wonder if it's specific somehow.


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## Serenia (Sep 27, 2011)

Jonny Panic said:


> So I have Graves', and my thyroid gland is twice the size it should be. My doctor wants to move past medication and go to radioiodine. Questions:
> 
> I'm told the numbers for treatment boil down to a roughly ~60% chance the treatment will solve my problem, but with a ~40% chance of resulting in hypothyroidism further down the line. Would it be feasible to request, say, half the dose? I know the numbers don't reduce in a linear fashion... half the dose might have something like 1/8th the chance... but I worry.


If you have RAI you can be guaranteed that you WILL eventually go HYPO. Which means you have to take a hormone supplement for the rest of your life.

Everyone who kills off their thyroid WILL GO HYPO. That is a 100% guarantee.

My dad nuked his thyroid, and is now hypo - he says it no bother for him to take a little pill every day, and have blood tests every 3 months.

Lets put it this way - the doctors work off the TSH and if your TSH does not settle down to "normal levels" after RAI, they want to nuke you again.

ANDROS on this site had to have RAI 3 times and he says he now regrets it.

That is partly why I refuse to do the RAI. I have other reasons for refusing as well.

Each body is different and there is no way to know how your body will respond tot he RAI - unless you do the RAI uptake before hand.

And NO I dont think you can request that they "halve" the dose - its usually all or nothing. The aim is to kill off your Thyroid - lowering the dose wont kill it, so why have the RAI done in the first place?


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## minli (Aug 2, 2011)

Not necessarily. The reason you have a RAI Uptake and Scan prior to having RAI treatment is specifically so the thyroid is NOT 100% killed off, but only a certain percentage is targeted. The dosage is nowhere near what it is for total post cancer TT ablation. The dosage is based on your thyroid's iodine absorption rates, hence the uptake scan. They don't just shove a pill at you willy nilly in the hopes of liquidating an internal organ from the inside out, it's just not how it works.

Yes a large amount of people who have Graves' and go through RAI will turn hypo after all is said and done. BUT, a decent amount of people don't....like me. Some of us have very stubborn thyroids and don't follow the rules. It is what it is.

To be honest, I cried when I got my 1 month post blood work results and realized I was still hyper.

No one can force you to do anything with your body you don't want done, talk to your doctors and definitely speak with the radiologist who would be giving you the RAI and don't do anything until you're comfortable with it. Period.

As far as the fear of losing part of who you are, your personality is not located in your thyroid  You'll be fine.

As far as the voice goes, I would have to assume the same thing you have as my thyroid is 2 - 2 1/2 times larger than it should be as well, and I haven't been able to trust my vocal range for a few years.

I am not really a fan of the meds, been on them for the past year with no real improvement, but every person is different, and as I said above, really talk with your doctors about all your concerns/questions and don't do anything you're not comfortable with


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