RAI - Any advice from those who had it & had any issues since

[LonelyPlace]

Hi

I was just wondering if anyone who has had RAI and had any problems/issues can tell me how they have been affected and if any regrets about it. Is it mainly due to hypo symptoms due to levo etc. or TED/salivary gland issues or others? (I already have diagnosed swallowing issues so severe long term salivary gland issues could be a problem. )

I am also aware about raised antibodies after RAI with symptoms such as ongoing tiredness/fatigue due to this treatment, among others. I have read about thyroid storm/thyroiditis quite soon after undergoing RAI which I am very concerned about as I believe severe disease/high antibodies can predispose to this. (The endo nurse said would only be on AT medication until about week before RAI then it would be stopped and not restarted afterwards?)

It's just that I've had long term Graves (2016) and tried titration but have severe Graves/high antibodies and a number of relapses causing severe issues/symptoms with heart - normally involving ambulances to A&E. So for last 19 months have been on block & replace but I have been awful on it with many symptoms but have not seen consultant in this time. After 2 cancellations I have my 3rd appointment now to see endo consultant next month and very apprehensive that it goes well and that I have enough time in just a 20 or so minute appointment when other stuff such as my blood results have to be discussed as well.

After I told the endo nurse a number of times I have not been well on B&R, the consultant sent me a letter saying that I wanted to stay on medication and that I should therefore consider definitive treatment at my appointment. I didn't know then how unwell I would be on medication though but since I have found out that it is an existence only, full of symptoms and not many good days, I absolutely see where he is coming from and hope I could not be worse than this? Since I have other issues I could not really opt for surgery, even though I feel it would be likely the better option (if my health was better).

That leaves me RAI only which I will have to discuss in detail at my appointment. I am averse to having this but now know I really do not have much choice - it's either stay as I am with loads symptoms and no life/not many good days or what?? But my consultant told me at my last appointment, that patients who had RAI there generally did worse than with other treatment options which confirmed my opinion at that time not to have it, although he didn't say how they were worse. I know my NHS trust only gives RAI in capsules which I couldn't have due to swallowing issues (most do this way I believe nowadays - I'm not sure if this is a more "safe" way to take) whereas maybe a minority do a liquid version but wondered if anything was known about this.

I'd be grateful for any replies, particularly from those with experience of RAI who have had some issues or those with knowledge of such in others. I wanted to be aware of what issues with RAI people have, so that I can contemplate what the right questions to ask may be when I do see the consultant and find some way forward with this awful lifelong autoimmune disease.

Many thanks to all 🙂

[pennyannie]

Hey there again ;

I can't offer any more information on the subject and would think if there is no way to keep your thyroid - a thyroidectomy is a safer, cleaner and more precise procedure -

It must feel like being between between a rock and a hard place -

and with the further issue of knowledgeable treatment for primary hypothyroid being something of a lottery.

[LonelyPlace in reply to pennyannie]

Hi again pennyannie

Thanks again.

Yes definitely like rock & hard place.

Seems like only RAI is left as tried medication and still been ill on B&R and titration was too risky as involves too many bad relapses.

I would have opted for surgery, the better option as you say but with other health issues and lately a heart issue, I don't think its very safe for me. So only the dreaded poison left to contemplate. Just trying to weigh up any issues forum members may have had with it before I have to agree to it. Consultant thinks I've tried it my way for 9 years and hasn't worked well since the relapse in 2021, so thinks I should opt for treatment now. I can see his point - that ongoing symptoms and relapses with severe Graves can also put your health in jeopardy - maybe more so in the long run BUT it is a last resort for me and that's why I'm worried about it and don't want to take it lightly.

Many thanks pennyannie