# Experience of RAI treatment



## jani_3 (Nov 21, 2012)

Hi All,

I have completed my RAIU scan and it showed I had a toxic nodule which is pumping out far too much thyroid hormone, causing my hyperthyroidism. Glad I could finally figure out what was causing this!

Anyways, plan is to have a dose of RAI to kill off the nodule, with the hopes I don't go the other way - hypo!

I should be having my treatment within the next few weeks, but I just wanted to know what people's experiences were with RAI. Did you end up going hypo or were you euthyroid after the treatment? Also, how long did it take for your hyper symptoms to go away after RAI treatment?

Also, I can feel the nodule when I swallow, some days are worse than others. When I took the RAI for my uptake scan I noticed the goiter got bigger and felt like it aggitated my hyper symptoms. How long til the goiter went away, or did it ever go away? My goal is to be better by September, as that is when I am getting married. Endo said it can take up to 6 months for my thyroid hormones to go back to normal - was this the case for other people too??

Pretty much I would just like to hear from people who have been through RAI for treatment of hyperthyroidism and what their experience of it was.

Cheers guys!


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## JPGreco (Mar 2, 2012)

I had a relatively small dose since my RAI treatment wasn't for cancer. I had 15mci of the RAI. Also, it was for general hyperactivity, not a hot nodule.

My experience wasn't too bad. In a couple of weeks post treatment, my thyroid was noticeable more swollen. Also, ALL of my labs came back much higher. That is to be expected though because as cells die, they dump their stored hormone.

About 2 months out from treatment, my labs were below where they were pre treatment. I was on a good trend up until late november, when my symptoms returned, again, to be expected in my case.

I never went into the "normal" ranges though prior to my levels increasing, but according to my labs, I have a severe case of grave's disease. I can say though that pre RAI treatment, I had a noticeable goiter. That hasn't returned yet, so technically, I am in a way, better than before. Hoping my second treatment does the trick.

Goodluck.


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## jani_3 (Nov 21, 2012)

Thanks for that JP.

I'm hoping that RAI gets rid of my goiter like it did yours. I have quite a large one and its hard to swallow some times. I can imagine that my symptoms will briefly get worse and my thyroid will swell as well. I notcied that even after the small dose they gave me for the uptake scan, my thyroid swell and my hyper symptoms seemed worse. Not looking forward to that part. But if it works in the end, I will be a happy clam!! haha.

I'm sorry that your symptoms returned. I see your TPO is quite high and you are allergic to tapazole...have you tried PTU? I hope you find something that works soon!!

Best wishes


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## JPGreco (Mar 2, 2012)

My doctor recommended against the other thyroid meds due to my allergy. She said that I'm most likely allergic to that as well. Though my doctor is WAY more concerned about everything than I am. I'm actually rather happy on just the beta blockers, but I'm not being affected by the myriad of other symptoms others seem to have, namely the experience of not feeling like myself. I feel fine and function normal day in and day out. As bad as my labs are I am suffering from a very mild symptomatic case of Graves.

RAI may reduce goiter, it depends on how large a goiter you suffer from. Mine was minimally noticeable and nobody who didn't know what to look for could see it, even with the right lobe more swollen than the left. The affect of the RAI made it swell for sure, but it definitely seems to have reduced some since treatment.

Best of luck to you. Hopefully yours will be handled by a single dose if it is only a hot nodule.


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## jani_3 (Nov 21, 2012)

Wow, that's awesome you haven't been too symptomatic. It's strange how some people can have labs that are out of whack and feel fine, but then others, like me, start to become symptomatic prior to labs changing. I started having extreme symptoms 2 weeks before my labs showed anything was wrong. My doctor suspected it was my thyroid based on my symptoms and when my labs showed everything was "fine" he told me it was just anxiety! 2 weeks later the labs caught up to my symptoms and I was placed on the beta blockers, but I find that they make me feel tired, which is a possible but rare side effect of them I'm told by my Endo. So I am not happy staying on the beta blockers, as I feel it's hard to get out of bed or do anything while on them...but if I am not on them, I cant function normally.

I feel hopeful that the single dose of RAI will fix me. I just know that thyroid disorder runs rampid in my family...my mum and all of my aunts have hypo. So I am just hoping I don't get pushed the other way now! I have read a lot about toxic adenoma (what I have) and it says it is mostly a disease of the elderly and occurs only in 3-5% of women over 60. I am only 27, so obviously I am not at a high chance of suffering from this, but I am! I thought at first my hyperthyroidism was caused by Graves disease as well because 90% of hyperthyroid cases, especially in women my age, are caused by Graves disease. Strange how things work, eh?

Glad you aren't too symptomatic and are coping alright. Thanks again for the input!


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