RAI treatment: Any success stories out there for... - Thyroid UK

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RAI treatment

BusyBee100
BusyBee100

Any success stories out there for people with Graves’ disease who have had this? I’m being advised strongly to go for this as a ‘cure’ after my third relapse in 5 years, even though carbimazole got these under control quite quickly and my consultant described my Graves’ disease as ‘mild’. I’ve read several posts from people who have regretted it and I’m finding the idea of deliberately destroying one of my organs very difficult to come to terms with.

12 Replies

I had it some years ago, had Graves for about 30 years so best thing I did, no problems afterwards and I'm well on Levo.

You will mainly see negative stories, some from people who have never had Graves or RAI so they haven't actually experienced either !

You have to decide for yourself if RAI is right for you or not.

Hello Busybee

I have Graves Disease. RAI in 2005 and now with Graves disease, hypothyroidism and TED.

Graves is an autoimmune condition and as such you have it for life.

Your thyroid is the victim, not the cause.

I regret having radioactive iodine treatment.

In my opinion RAI is a quick fix - 15 minutes in outpatients and referral back into primary care. It is the hospitals recommend course of treatment, it is in the hospitals best interest, financially, but not necessarily in yours.

if nothing else please read Prof Toft's Thyroid hormone replacement - a counterblast to guidelines - it's in this website somewhere, sorry I don't know how to resurrect it for you.

This eminent endocrinologist is responsible for many of the guidelines that doctors work to, in his retirement he has come out against some of the guidelines that are still in place.

Simple read this article, this man is not putting his patients forward for RAI anymore

due to the lack of proper care, knowledge and management within the primary care.

Elaine Moore's USA website is very comprehensive:

Dr. P Durrant-Peatfields book - Your thyroid and how to keep it healthy is very good :

It's a massive learning curve, I just wish I knew all that I know now, back in 2003 when

first diagnosed with Graves.

You will need to educate yourself, knowledge is power, and in my opinion there is very little knowledge of Graves in the primary care sector.

Todd
Todd in reply to pennyannie

Totally agree, I had it in Jan 18 and wish I had resisted the pressure.

shaws
shawsAdministrator in reply to Todd

pennyannie is correct correct about Dr Toft's article to all doctors. Even he is realising that endocrinologists and doctors in general are very poorly trained and unknowledgeable about anything to do with the thyroid gland except to look at a TSH.

healthunlocked.com/thyroidu...

I'd go along with pennyannie. I had Graves, but after relapsing once and not getting on with Propilthyouracil I had to have a quick sub-total thyroidectomy as I was 14 weeks pregnant. Having been told that most people become hypothyroid eventually I would rather have tried to hold on. Because of the pregnancy I had no option, but would much sooner be Hyper than Hypo.

Can you tell us a bit more? How were you diagnosed with Graves disease? Were you tested for TRAB and TSI antibodies and if so, what were the results? Have you had Hashimotos thyroiditis ruled out with tests for TPO and TgAb antibodies tests? What treatment have you had to date and for how long?

You could ask for copies of results of thyroid tests and post them here for some advice from experienced people.

BusyBee100
BusyBee100 in reply to Nanaedake

Hi thanks for your interest, reading all these posts makes me realise how little I know about my own condition! Diagnosed in 2013 with GD following severe tonsillitis which at the time I thought was followed by a post viral illness until tested by Gp TSH below <0.01, T4 53, Vit D deficiency. Had thyroid uptake scan showing 9% uptake. TPO at time below 20. Can’t find other antibodies test results but about to have TRAb antibody test. From initial diagnosis on carbimazole for about 9 months (I know now this wasn’t long enough) followed by relapse a few months after coming off it, second relapse 18 months later after the flu, 3rd relapse August this year TSH 0.02, T4 22.8 no obvious cause apart from possible stress.

Between relapses health fine, no problems with eyes, or shins or itching, weight stable apart from first bout and carbz sorted out relapses within 2 to 3 weeks each time. Am I right to be cautious about RAI even though I’ve had 3 relapses now?

Nanaedake
Nanaedake in reply to BusyBee100

I think I've read that having a viral infection can trigger off thyroiditis so it might be worth ruling out viral infection as a cause of raised FT4. You must test FT3 to be sure of hyperthyroidism. TSH and FT4 is not enough. T3 is the active thyroid hormone and will be raised if your thyroid is overactive. If it were me, I would want to be clear about what my FT3 levels were both now and historically. You don't give a range for TPO so it's not clear if this was elevated but hopefully your TRAB test will clarify the situation. Make sure you get a copy of results along with the lab ranges. You could post them here for people to comment on.

I don't know if care before & after RAI differs in different areas of the country. I was given the choice of surgery or RAI. I was given leaflets of what was involved & did research myself. I then had to let hospital know what I had decided.

I attended the clinic for over 2 years after RAI & had blood tests every 4 weeks to start with then every 6 wks then 8 weeks but could get blood tests at GP surgery if I ever felt I needed them.

I have quite a complicated thyroid history had a partial thyroidectomy in my early twenties then recurring hyperthyroid episodes into my fifties, I was advised to have RAI as the miracle cure and then just take thyroxine apparently much easier. Wish I could say that was true I've not been really well since having RAI in 2012 and I wouldn't have it again. Hyperthyroid was easier to treat so I wouldn't advise anyone to have it.

I think there are differences in the level of care throughout the country.

I was given no choice in my treatment - it was RAI after 15 months on Carbimazole.

I was given no treatment prior to the RAI to reduce the risk of TED.

I collected two leaflets from the hospital general enquiries office, as I needed now information than that given to me at appointment. I know now these pamphlets were not fit for purpose, but believed their content as I had no other reference in 2003.

I have been managed on TSH blood tests and my health has been seriously compromised in the past 4-5 years, during which time I was referred to rheumatology, gastroenterology and ultimately endocrinology. I don't know if the medics don't understand Graves. and, or the repercussions of drinking RAI - it seems to pot luck to find any help, and I struck out, and now self medicating.

It is does seem to be a lottery, and I'd simply add, why put yourself forward to drink a poison that goes through the whole of your body, and can cause serious complications down the line.

There are options - RAI is not a " cure " - there isn't a cure.

Graves is an autoimmune condition and as such you have it for life -

True once " nuked " the symptoms are not meant to be " life threatening " -

Once "thyroidless ", through surgery or RAI you will then be hypothyroid, and here again the disparity in treatment within primary care leaves a lot to be desired.

I know it is very difficult to stand your ground and question the NHS dogma :-

maybe ask the endocrinologist if they would be happy to loose their major gland ,

the thyroid is the "conductor of your whole body's orchestra " .

So, yes, I've gone full circle here, the treatment for all things thyroid would seem to be inconsistent. The guidelines are not fit for purpose, and that is from the " horses mouth " Professor Toft.

Sadly we are at the mercy of doctors who choose not to listen to us, and blindly follow computer guidelines - job done ?????

Why can we be given anti depressants without any proper testing, but not given proper thyroid evaluation blood tests for a health condition that we have been diagnosed with ?

Hi BusyBee,

I had RAI in 2009, I had been diagnosed with graves and been very unwell for a long time. 2 years of Carbimazole could not get my hyper symptoms under control. I was really struggling to function and manage 2 small children at the time. It's a long story but basically I don't regret having RAI at all, it not a magic cure and I'm now underactive, sometimes I am really well sometimes not so great but overall I feel a million times better than I did before the RAI.

The only thing you can do is get as much information as possible then decide for yourself if you think it's for you. Everyone is different, what suits one person doesn't suit another. All I know is that I couldn't have carried on without it.

I had an amazing Endocrinologist who talked it all over with me many times before I went ahead with it.

Good luck with whatever you decide.

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