# Radioactive Iodine or thyroid removal



## purplefreak (Apr 17, 2012)

Thank you all for your posts. I have been reading for while but now just needing to ask some questions.
I was just diagnosed with Grave's disease. My primary dr told me that I needed to have the Radioactive Iodine treatment as soon as possible due to my numbers. I really wanted a second opinion before doing that so I am now seeing a specialist in thyroid disorders. The new doctor is starting me on 20 mg daily of Methimazole and 20 mg of Propranalol. The specialist did talk to me about the fact that the meds may not work and I should start thinking about either having the radioactive iodine treatment or having surgery to remove the thyroid. 
Lab results:
TSH <.01 - range .4-4.5
T4 (thyroxine) total 20.1 - range 4.5-12.0
Free T4 index (t7) 8.8 - range 1.4-3.8
T4, Free 4.1 - range .8-1.8
T3, Total 527 - range 76-181
T3, Uptake 44 - range 22-35
Thyroid scan and uptake
6 hour - 78% - range 6-20%
24 hour 91% - range 8-35%

I'm wondering for those of you who had a thyroid that didn't respond to meds - what helped you decide which route to go? If you could go back and change your decision - would you and why?

Thank you all so much!!!


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## desrtbloom (May 23, 2010)

I couldn't have the RAI because of my condition. I was put on Methazimole and Propanol and it took three months to get my levels in a safe zone to have the thyroidectomy. I would absolutely do the thyroidectomy again. It took time to get my thyroid levels regulated after the thyroidectomy, but I was so ill and within days after the surgery I was feel MUCH better.

Good luck! :hugs:


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## Andros (Aug 26, 2009)

purplefreak said:


> Thank you all for your posts. I have been reading for while but now just needing to ask some questions.
> I was just diagnosed with Grave's disease. My primary dr told me that I needed to have the Radioactive Iodine treatment as soon as possible due to my numbers. I really wanted a second opinion before doing that so I am now seeing a specialist in thyroid disorders. The new doctor is starting me on 20 mg daily of Methimazole and 20 mg of Propranalol. The specialist did talk to me about the fact that the meds may not work and I should start thinking about either having the radioactive iodine treatment or having surgery to remove the thyroid.
> Lab results:
> TSH <.01 - range .4-4.5
> ...


If they did not see anything untoward in the RAIU, RAI could be a strong option. But do be aware of the fact that some of us, myself for instance, had to have RAI 3 times.

If I could do it over, I would opt for surgery. I was never given that option. This was many many years ago. This way, pathology can give it a good going over. Cancer can be missed in these scans.


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## polly (Oct 29, 2010)

I was diagnosed with Graves in 2006 and chose to do the meds. I just had a TT March 5. Per my Endo and research I did, if there is any eye involvement the RAI can make it worse.

My surgery, as most here, went pretty smooth, recovery and all. Wished I'd had the TT years ago now : )

Take care.


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## purplefreak (Apr 17, 2012)

Thank you all so much for sharing your information. At first the idea of surgery just scared me..... But the more I am hearing about multiple tries at the RAI and the issue with making eyes worse, I'm starting to wonder if surgery wouldn't be the better option.

I go back in 3 months (more lab work in 1 1/2 months) and I guess we'll see what's going on. The only thing that feels different at this point is my heart is not beating nearly as fast and I'm not having as many palpitations. Beyond that I feel the same so I'm not sure if the thyroid medication is actually doing anything.

Have a wonderful day all


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## webster2 (May 19, 2011)

I had a completion thyroidectomy in July. My medication is just beginning to get to a really good place and I feel good. I don't regret it at all. Best to you with your decision!


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## dlo1725 (Oct 30, 2011)

I was diagnosed with Graves last fall. Lab results showed readings 3X higher than normal. Endo put me on same dosage as you. Within 3 months lab results showed normal readings and Endo reduced Meth to 10 mg per day.

Labs did drop below normal and I can only describe the way I felt as "walking through water". Latest Labs show leaning towards normal but I need to have 2 more labs completed before another reduction in mg's per day.

Eye involvement kicked in 3 months after I started taking Meth however the meds have given me my energy back, no more heart palps, no more itching and no more insomnia.

I am hesitant about the surgery as you obviously need your thyroid. I would rather stay on Meth and manage my disease with hopes of remission one day. I hate taking any type of medication and do not want to be on medication for the rest of my life because I had my thyroid removed. I have read that it is much more dangerous to by hypo than hyper.

If my eyes don't return to normal this year I may consider the surgery. The eye involvement is very uncomfortable to say the least and in itself exhausting.


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## JPGreco (Mar 2, 2012)

I've heard the opposite, that methimazole is more dangerous for long term than armour or synthroid.


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## _Sunshine_ (Nov 24, 2011)

Hi Jp,

I have no idea why so many people on this board are negative towards the radioactive iodine. My specialist told me that they rarely perform the surgery anymore unless you are pregnant or any other reason as to why you are unable to get the radiation.

Having the thyroid surgically removed comes with a million risks like any other surgery. You are in the hospital for a minimum of 3 days and can have a very slow recovery. Whereas if you were to have the radiation, you take a tablet and (depending on the dosage) you have to stay away from people for a week and have your own toilet and all that but you have hardly any side effects whatsoever.

I may of course be wrong but I believe if you choose to get the thyroid surgically removed they take 2/3 of it? If there happened to be cancer in your thyroid and they happen to cut the actual cancer (it can happen) then it will most likely go into your blood stream and you will have wayyyy more complications. I definitely wouldnt want to take the riskier option.

At least when you get the radiation, you literally take a pill and off you go. I had the iodine radiation in September 2011 and the only major problems I had was to do with the propronal (awful medication!!) before the radiation and to balance my levels once I was put on Thryoxin. And my eyes got a bit more sensitive - but that was not from the radiation itself.

Even if you have to get the radiation done a few times ... I think it is a much safer option.

Bear in mind I do live in Australia so things may be different but from what I have researched myself and from what my specialist has said... radioactive iodine is much safer and is very effective and I have nothing negative to say about it. And if there is cancer - the radiation will most likely kill it anyways.


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## Lovlkn (Dec 20, 2009)

JPGreco said:


> I've heard the opposite, that methimazole is more dangerous for long term than armour or synthroid.


I was on another board where there were several people who had been on tapazole/methimazole for over 20 years.

I had to give up because my meds had to be changed every 3-4 months and the monthly lab draws.

Surgery was my choice after hearing so many stories of RAI that ruined lives - exacerbated TED or had to be repeated multiple times.

If you have any eye involvement at all surgery should be your 1st choice in a permanent treatment.

Regardless of treatment chosen - you must learn to be proactive in management of your replacement dosing and insist on FT-4 and FT-3 tests for proper dose adjustment.


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## JPGreco (Mar 2, 2012)

My endo just said it can cause serious side affects, so just reiterating that here.

What is TED? All these abbreviations I don't know. Is there a guide to them somewhere on the site?


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## midgetmaid (Jul 22, 2010)

I think TED is thyroid eye disease

Renee


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## webster2 (May 19, 2011)

Lovlkn said:


> Regardless of treatment chosen - you must learn to be proactive in management of your replacement dosing and insist on FT-4 and FT-3 tests for proper dose adjustment.


These are very wise words here.


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## joplin1975 (Jul 21, 2011)

_Sunshine_ said:


> Hi Jp,
> 
> I have no idea why so many people on this board are negative towards the radioactive iodine. My specialist told me that they rarely perform the surgery anymore unless you are pregnant or any other reason as to why you are unable to get the radiation.
> 
> ...


Just wanted to note a few things:

1) Most people stay only overnight after thyroid surgery. My stay was ~12 hours. There's move to make it an outpatient surgery. 
2) Thyroid surgery has a low risk on infection relative to other surgeries.

RE: 1 & 2, see: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868204/

3) RAI (which I also had) carries risks too. To say you pop a pill and off you go is a bit of a misrepresentation. You are ingesting radioactive material. This can effect fertility. It also impacts WBC and there is a low risk of developing leukemia.

There's not a no-risk option here -- one has to decide what works best for their individual circumstances.


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## webster2 (May 19, 2011)

Joplin, too, speaks wise words!


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## purplefreak (Apr 17, 2012)

Wow - so many different things to consider. I think I have the beginnings of the eye issues and if possible I'd like to keep that from progressing anymore - which I heard the RAI would/could make worse. I will have a very hard time staying away from people for any amount of time and having my own toilet would not be possible..... oh my goodness - that's crazy stuff!

My specialist told me that while being hypo may make you feel like crap it's not life threatening in any way. However, being hyper can cause problems that eventually can be life threatening - such as being untreated and the problems to your heart.

I've also been reading that they don't always remove the whole thyroid - they leave part in sometimes hoping that it's enough to stop the hyper but not make you hypo. I guess that's when you really need a skilled surgeon who works with you and your doctor to decide exactly how much to remove.

You all have brought up some issues/concerns that I would not have considered. Thank you ALL for your input and thoughts - it's a blessing to know that there are people out there still willing to help


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## polly (Oct 29, 2010)

Methimazole (Tapazole) can cause a lot of side effects as any medicines. Doing lab work as scheduled is very important. For me, after 6 years and now having to take medication for another autoimmune disease it was best for me to no longer take it.

There are risks with all surgeries, but as you read from the ones here that have had a TT most had little or no problems.

As far as cancer, there was nothing indicating that I had it. Yet, after my surgery, pathology revealed a small cancer! Had certain things not lead up to my decision to have the surgery, I would still be walking around totally clueless that I had a cancer in my body. I thank GOD that I am now cancer free.

Purple - only you can make the right decision for you. We are here to offer our support and own personal experiences. Good doctors, on top of lab work, etc, will help you make that decision. Good luck


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