I had a TT in February due to a 1.0 cm papillary cancer nodule. The cancer did not spread.
I had my 6-month ultrasound and that came back good.
It has been recommended for me to have the RAI treatment because there was some angioinvasion on the pathology report.
I am on the fence about it. I am worried about the side effects, both short and long-term, as well as everything else that comes with putting poison in your body.
I would love to hear everyone's knowledge and experience with this!
Sorry to hear about your thyroid journey.Although many of us on here have thoughts about and/or experience of RAI and I am one of those, you haven't had any responses yet to your post.
I think the reason is the angioinvasion. None of us are medically trained and the angioinvasion adds an additional medical consideration to your treatment.
I hope someone who has faced a similar situation comes along to respond.
Hello PurpleButterfly :
I had RAI but for Graves Disease which is an auto immune disease that just happens to attack the thyroid.
I deeply regret this treatment option, as it wasn't necessary in my situation but I wasn't given any other treatment option and didn't know enough, back in 2005 to say No :
Yes you quite right as there can be side effects both in the short and long term :
All you can do is thoroughly research your particular health issue - and I'm sorry I don't know enough to say much more than this.
Take good care ;
Thank you for your reply. Do you know what the dose of your RAI treatment was? A lot of info I have been reading is more negative reactions with larger doses.
No sorry - I have no idea -
but do know from reading on the Elaine Moore Graves Disease Foundation website and from her first book that the dose is not as exacting as one might think ??
The idea with Graves, which is hyperthyroidism, is to give a dose of RAI which is " just enough " to reduce, damage, disable just a proportion of the gland thereby reducing output and reducing hyperthyroid levels of T3 and T4 back down into " normal " levels,
As I understand things RAI is a slow burn - I was put immediately after RAI on 100 mcg T4 - and was functioning quite well for a few years but then encountered an ever increasing circle of unwellness that swallowed me up - details on my profile page.
I think my thyroid fully gave up around 8 years after RAI :
I have read that the Quality of Life is worse at 6-10 years post RAI for Graves patients compared to those Graves patients who remained on AT medication.
I'm now managing lingering Graves, thyroid eye disease - caused by the RAI -amongst other things - and hypothyroidism and self medicating with full spectrum thyroid hormone replacement as the NHS refused to consider me for either T3 - Liothyronine or Natural Desiccated Thyroid .
I have trialled both these other options for myself and have settled on NDT as it feels softer on my body.
I am now 3+ years into self medicating and just take a yearly private full thyroid blood panel more to see where my vitamins and minerals sit, as I need to supplement and maintain ferritin, folate, B12 and vitamin D at optimal levels to assist my body in converting the thyroid hormone replacement.
I have read that RAI effects are often worse for people with Grave's Disease. I am not sure why that would be as opposed to those with TT. I hope you are doing well and can find a stable treatment plan to help you feel good. 
Well RAI for Graves Disease is the cheapest option -
In my case RAI was presented as risk free and a better option than staying on the AT medication which actually suited me fine though told that " you may go a little hypothyroid but we can treat that with one little pill daily "
You drink down a drink in Nuclear Medicine , or just take a tablet with a glass of water and off you go - discharged back out into primary care - there is no follow up.
It is the cheapest and most cost effective option.
But the gland is not removed, but stays in the neck festering away, full of a toxic substance that slowly burns it out in situ.
A thyroidectomy is a much more precise and a "cleaner " option - the gland and it's offending contents are removed - though of course a more expensive option to perform and yes, of course, any surgery has risks.
Logically for Graves, an autoimmune disease, staying on the AT medication long term would be the sensible option but it's the most expensive of all the options.
Nowhere, for Graves Disease does the patient's long term QOL seem to be a consideration.
Actually if I had had a thyroidectomy and carried a scar, I would not have been as ill as I have been and from what I read been better treated as I would have had a surgical intervention, a major gland removed, and more likely need both T3 and T4 thyroid hormone replacement.
I'm ok thank you, I'm as good as I'm gonna get - xx
Graves disease remains after the thyroid has been removed and the autoimmune attacks can continue to have an effect on other tissue such as the eyes.
They say that they judge the dose according to the individuals weight etc but I don't think it is that an exact match.
In your situation it is very difficult to know what I would do.
My doctors implied I don’t have an option on treatment & I had to accept RAI to treat my my hyper nodule, but I didn’t agree. I may feel very different if I had cancer diagnosis.
For treatment with radio active iodine (for Graves) in the UK a fixed dose strategy is used. As the increased cost of imaging the uptake and calculating a precise dose has no clinical benefit except the theoretical excess exposure to radiation.
I believe the doses used to treat cancer are higher than what is used to treat Graves, although I don’t know if a lower dose is require after a thyroidectomy or if it is calculated in any way.
On this forum you may read about examples of those who regret RAI but to give a balanced view there are many who undergo the treatment & do not experience unexpected complications. They are living their lives without the need to seek help from a forum & there isn’t the data to show by what majority completely recover & the percentage may have some or great struggles.
I had RAI following a total thyroidectomy in 2014, which found a cancerous nodule and one positive lymph node. I had the lowest dose possible and follow up at 6 and 12 months with iodine uptake scans to see if any thyroid tissue or thyroid cancer was left. Both scans were negative and I now just have yearly thyroglobulin tested.I found the rai made me tired and I had altered sense of taste for around 6 months ( red wine tasted awful!). Long term I have a butterfly area of skin on my neck which remains white and doesn’t tan but otherwise I cannot identify any other residual effects. Thyroid hormone replacement therapy now is a different story but I eventually I got the correct levels for me.
If you have blood vessel involvement I would seriously be guided by medical professionals, if necessary ask for a second opinion. Further more radical surgery on your neck in the future could be very life altering.
I wish you well.
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