# will be getting RAI soon ...



## Miss Erika (Mar 22, 2011)

I've have toxic multinodular goiter/hyperthyroidism. I've been on PTU for over 7 years and just had an uptake done last week. My endo called me today and said that I definately need the RAI. She said i will get a dose of 20 millicuries. I am very nervous as to what I will expect - mostly nervous about turning hypothyroid and gaining a ton of weight. What will I experience once i swallow that pill - any input would be appreciated. Thanks


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## mum2bradley (Sep 27, 2010)

I just had mine done last Thursday. I was dx with Graves in September and tried to take tapazole.
I took 12 mci in liquid form. Honestly I haven't felt and different than I did before, but that wasn't too great. So I haven't noticed anything different yet.

I did 3 1/2 days of isolation and am out now but remaining 3' from family.

I too am worried about gaining weight as I have always been thin.

Leanne


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## Andros (Aug 26, 2009)

Miss Erika said:


> I've have toxic multinodular goiter/hyperthyroidism. I've been on PTU for over 7 years and just had an uptake done last week. My endo called me today and said that I definately need the RAI. She said i will get a dose of 20 millicuries. I am very nervous as to what I will expect - mostly nervous about turning hypothyroid and gaining a ton of weight. What will I experience once i swallow that pill - any input would be appreciated. Thanks


Hi there and welcome. There might be some bumps in the road re weight. The first thing I would do is get on a very good nutritional and healthy diet such as Sugar Busters, Weight Watchers, South Beach or whatever. You can manage to avoid gaining weight. I did.

But if you need to lose and you don't sound like you do, that cannot be achieved until the patient is euthyroid.

How are your liver enzymes? That is a very long time to be on PTU!


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## runnergirl (Feb 6, 2011)

Hi there! I am 5 weeks out from my RAI. I also had 20 millicuries. I'll tell you what I've experienced.
I felt great in the week after. I did stay away from others for 72 hours. My husband and dog were home but stayed clear. Use paper/plastic utensils to eat. Clean restroom and sleep alone.
Easy...got boring...but easy.
I still feel wonderful. I am 2 1/2 weeks away from my first labs and I CANNOT WAIT! I am on a beta blocker 2 times a day. Slowly going down to 1. I don't feel like I need it anymore which is amazing. I have noticed in the past 2 days that I am so tired. I cannot keep my eyes open at times! I hope that's a sign I am going hypo. 
As far as weight...I am so concerned like you. I am a marathoner and extremely active. I have not been for a run in 2 months! I am allowed light exercise and in one week and I can start bumping it up. I lost about 10 pounds while I was hyper and I haven't gained any back. If I do gain, it's because I eat a bunch and then after a day I am back down. I am worried because I am on my Spring Break right now and you know how eating and vacation goes!
I am worried sick and please know that you are not alone! Please talk to people and ask as many questions as you need! It's amazing how many people have gone through this but also how different everyone's experiences are.
Good Luck!


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## runnergirl (Feb 6, 2011)

One more thing...I had a very sore neck. It lasted about 5 days. I didn't feel that until about a week and a half out.


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## cathyl111 (Oct 30, 2011)

I have a toxic multinodular goiter also. I have finally decided after about 1 1/2 years since I have gone hyper that I need to either have the RAI or have a partial thyroidectomy. Endo and surgeon feel my left lobe is fine. It is the right lobe causing the problems.

I have met with a surgeon and I am meeting with the endo to get a little more info on RAI on Thursday.

I am leaning toward the surgery, but very anxious.

Miss Erika were you given the option of surgery and you chose RAI? If so, are you happy with the decision.

I think the main reason I am leaning toward the surgery is the hope the left lobe will be fine and I can avoid any medication.

Thoughts?


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## Andros (Aug 26, 2009)

cathyl111 said:


> I have a toxic multinodular goiter also. I have finally decided after about 1 1/2 years since I have gone hyper that I need to either have the RAI or have a partial thyroidectomy. Endo and surgeon feel my left lobe is fine. It is the right lobe causing the problems.
> 
> I have met with a surgeon and I am meeting with the endo to get a little more info on RAI on Thursday.
> 
> ...


This is a sticky wicket because sometimes it just does not work out with titration and stabilization w/thyroxine due to the remaining half putting out one day and not the next.

Not to mention that if you do the surgery, they may "have" to take the other half. It depends on once they get in there. And I will bet any money your surgeoun will tell you that.

Let us know what you decide.


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## cathyl111 (Oct 30, 2011)

You are correct - I have been advised that the other lobe might not function and I will need some medication. However, they seem to be leaning towards it functioning.

Even if it does not and I have to go on medication, I am thinking that if I become hypo after surgery versus RAI it won't be as dramatic as I won't have to wait for the RAI to destroy the tissue. Do you think I am correct in this assumption?


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## Octavia (Aug 1, 2011)

The RAI isn't selective about what tissue it kills off...it will kill some of your good tissue. I know that doesn't really address your question, but just wanted to bring it up, in case your doctor did not share that detail.


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## cathyl111 (Oct 30, 2011)

They did mention this. I am prepared for the entire thyroid to be useless.

However, I was wondering if the process to becoming hypo is easier after a partial removal of the thyroid versus the RAI.

To tell you the truth, the waiting is the worst part. Super anxious.


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## joplin1975 (Jul 21, 2011)

I was told that the RAI does most of its job during the first 72 hours, but it can kill cells up to six months after receiving the therapy dose. It might not be that long for you since you'd presumably not be getting a large dose (I was given 100 millicurries). Regardless, yes my understanding is that it would longer to find your "hypo bottom" with RAI as opposed to surgery.


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## cathyl111 (Oct 30, 2011)

I have scheduled the surgery date just so I am on his calendar, but probably won't decide for sure until next week. Meeting with endo next Thursday as I have lots of questions.

It is so interesting when doctors talk about the RAI. They really don't think it is such a big deal. I know as the patient we don't think it is so simple.


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## Andros (Aug 26, 2009)

cathyl111 said:


> You are correct - I have been advised that the other lobe might not function and I will need some medication. However, they seem to be leaning towards it functioning.
> 
> Even if it does not and I have to go on medication, I am thinking that if I become hypo after surgery versus RAI it won't be as dramatic as I won't have to wait for the RAI to destroy the tissue. Do you think I am correct in this assumption?


I would definitely have the surgery for a myriad of good reasons. Cancer being one. It is better to know than not to know. With RAI, you would never know plus as our Moderator has stated, RAI is not selective.


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## cathyl111 (Oct 30, 2011)

I have been told that it is not cancer. Although I know some on this board have been told the same and it has turned out otherwise.

I believe they have come to this conclusion from the FNA and uptake.

I have had 4 breast biopsies in the past (all turned out to be benign). Philosophy was that you don't know until you take it out. Therefore, I am familiar with this concept.


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