Has any one been treated by radio-active iodine?

Hi Guys,

So I have had an overactive thyroid since i was 19, i am now 24. I have graves disease and due to this a groitre.

The doctors keep on telling me that i should blast my thyroid with radioactive iodine, but to be honest i am really scared that without a thyroid I am gong to put on weight that I just wont be able to shift. Has any one been treated by radio-active iodine?

9 Replies

  • Yes, had RAI and put weight on - but lost it very quickly when my dose of thyroid hormones was put right. I went under active (from Graves') and it took the best part of a year to get my medication sorted, but some of this time was wasted because my then- consultant didn't want me have T3. As you probably know from this forum, T3 is still a big bone of contention, but some people are fine on T4 alone. Good luck,whatever you decide to do. Graves is deceptively good because you feel full of energy - or too much!- but it's a long-term problem because of the stress it puts on your system.

  • You don't mention if they have tried antithyroid drugs, because RAI is a drastic treatment and can set off Graves' Eye Disease too.

    I am amazed that they want to do RAI when you are so young, they used to avoid RAI in women of childbearing age, preferring to remove part or all of the thyroid surgically once all the other avenues have failed.

    Have other things been tried first?

  • If you're a singer then the surgical route is something to think very carefully about - they go in VERY close to your vocal chords. A lot of people report being left with a hoarse voice, sometimes for a long time. Although I don't think I've heard of someone for whom it never cleared up.

    Your fears about the weight are well-founded. And I, too, am surprised that they want to use radio-active iodine on someone of your age. Presumably they can't keep the goitre and hyper-activity down with Carbimazole or PPL? The choices really aren't very attractive, I do know! But, unfortunately, the stresses on your system from an over-active thyroid are very real.

    What treatment are you on now?

  • When my husband was faced with Graves that would not stay in remision he was strongly told by the Endo that RAI should never never be given to anyone under 40

    He had surgury instead but it was just a few short years before he slipped into severe hypothyroid and hashimotos

    My personal view is RAI is not to be recomended at all especially for women but either sex must seriously consder the genetic predominance of graves or hashimotos and other autoimmune diseases they will convey to their children

    Our daughter is devastated that she developed Hashimotos age 36 and has conveyed this to 3 of her children

    Our other daughters little girl also has hashimotos

  • I had RAI when I was thirty. At the time, I didn't know about other options but was so ill, I jumped at the chance of getting better and took them at their word this was the right course to take. This was offered after year of unsuccessful treatment on anti thyroid drugs.

    Now I'm much older and wiser! They simply mismanaged my anti thyroid treatment. I was not in control and didn't know any better, so I just followed their treatment and dosage regime.

    I should not have been given RAI especially as I had thyroid eye disease (TED). RAI is contraindicated with TED and it made my symptoms much worse.

    RAI treatment is the easiest and cheapest way of getting patients off their hospital lists - especially complex ones that are difficult and costly to treat. Once the treatment renders a patient hypothyroid (and don't be fooled into being told this won't happen) they can the sign you off back to the GP to be treated with thyroxine. Unfortunately the same is said for surgery. Although it costs more, the outcome is the same - they can be rid of you. Yes - it's a cynical view that they would hotly dispute.

    I'm not saying for one minute that RAI or surgery is not the right option. What I am saying is that both these treatments are the final option because there is no going back from either.

    My personal view is that RAI or surgery should only be considered after all other options for medication have failed - not because they have failed to give good treatment for hyperthyroidism.

    This means treatment at the right dose for YOU and not just according to blood test results, which should only be used as a guideline.

    Have they tried the 'block and replace' protocol? You are very young to be going down the road of both RAI and surgery unless they have tried everything else AND given optimal treatment in the process.

  • Hi Guys,

    Thanks for all your responses. I was diagnosed at 19 and have been on carbimazole ever since. They have tried a couple of times to take me off them once my thyroid is 'at a level' so they say, however i have relapsed both times. I feel fine at the moment and taking a pill every three days, but they have told me that carbimazole can be damaging if you take it for more than 3 years, which i have been. I do believe that 'editfmrt' is correct, i do get the distinct impression that they just want to give me the treatment so that they can see the back of me. Its definitely a scary decision as it is very final.

  • I totally agree with you editfmrt, you have said exactly what I feel about the treatment of Graves, and yes, I know I sound very cynical when I say the cheapest fastest way to get rid of patients.is to give them RAI then pack them back off to their GP who may or may not understand thyroid problems and who may or may not be willing to give the patient enough levo and /or T3 to keep them well.

    I was even told I was unlikely to become under active - that only happens to a tiny number of patients. Ha!

    I'm sure there are people who have had RAI and who feel very well now and have not become under active with all the problems that entails but I would rather not take that chance unless it was a very last resort. They may be able to kill off your thyroid but you will still have an autoimmune disease.

    I know a lot of doctors don't like you to be on it for a long time but according to Dr Anthony Toft ( who is very establishment!) in his little book Understanding Thyroid Disorders patients can stay on Carbimazole for quite a long time.

    For someone who is young and who is likely to be around for a lot longer than I am I would definitely not want to have RAI or even TT unless it was a very last resort, especially when you consider that a drug company is working on a possible vaccine for Graves businesswire.com/news/h...€6M-FP7-Funding#.U1PD4Ce9KSM

  • I had RAI around 14 years ago and it was the best option for me. You will only hear negative stories on the forums.

  • I was overactive for many years & had thyroid eye disease. A brilliant older doctor at Salford Royal Hospital (cannot remember his name) told me NOT to have any RAI treatment because it would make the eye disease worse. It is a constant surprise that this information is not more generally known, especially among the medical fraternity.

    As it turned out, after an extremely stressful period in my life, the hyperthyrotoxicosis changed to hypo, so now I was & still am underactive.

    I am so glad I did not take up the offer made by several other doctors & consultants to have RAI in earlier years. My eye disease has remained stable & I feel fine now. So go with your gut instinct & do not have the surgery. Do not worry about the long term effects of being on carbimazole either. I was fine & I'm sure you will be too.

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