Radioiodine Treatment, the risks to others, how long will I need to be off work etc

Hi folks, so as the medicine is making me feel so bleh I'm leaning towards radioiodine treatment as my main option for my hyperthyroidism / Graves' disease as surgery scares me.

Can anyone tell me what the actual risks are of being around people after treatment? What dose am I likely to be given for hyperthyroidism / Graves'? How long will I have to be off work etc?

The doctor that analysed my thyroid scan said that because I work in an open plan office with a lot of women of child bearing age I would have to be off for 2 to 3 weeks. I told one of our directors this and they thought it was just the NHS covering themselves and that I don't actually need to isolate myself from people etc.

Obviously doctors know better but I need a better idea about radioiodine treatment to make an informed decision. I will ask my endo at my appointment next week but I'd really appreciate any info from people who have been through this treatment for similar reasons. Do i have to sit in another room from my partner at home? Is it safe to hug the cats? How long do I need to isolate myself. Any info you can give would be appreciated.

Thanks,

Lynsey

43 Replies

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  • I cannot help as I am hypo but this is what Dr Toft of the BTA says in an article:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

    ****

    This is a link re previous posts

    healthunlocked.com/search/r...

  • Thanks for this....I know that continued medication is an option but Carbimazole made me physically sick on numerous occasions so I have to take Propylthiouracil (PTU) and whether its the PTU or the Graves' or what I'm really struggling to keep going at the moment which is why I don't feel that continuing with medication is an option. I don't have a goitre but just want some more info on Radioiodine and what it actually means and how it affects your life. I've been told there's a chance I'll go hypo after too so I'm aware of this although not thrilled by the prospect.

  • Hi Lynsey, are you on the block and replace? When I was diagnosed my T4 was nearly 70 and they offered me RI but I really looked into it and the block and replace. I decided to do something a bit different and got reluctance from gp and more positive response from endo. I have monthly blood tests and was able to reduce the carbrimazole from 40mg daily down to five mg. I feel much better and my last bloods meant I have cut the dose again to 2.5mg. I have given up wheat (easy honestly!) and feel tons better for this, reduced dairy and ditched the caffeine. Cut down booze as much as I enjoy it, does not make me feel good afterwards. I take quite a few supplements - wish I'd gone to expert nutritionist about this as I've probably spent far too much on them. I also have acupuncture and a monthly massage. And a good diet vaguely following the Low FOD map, plus taking Aloe Vera and L-Glutamine for gut health. It seems, touching wood, to be effective. I feel if I do eventually have to have more serious treatment that I have done all I possible can to heal my body and will be more positive because of it. x

  • Hi Tilly,

    I was on block and replace last time but this time it's just been block thus far as the current dosage (2 x50mg twice a day) of the yucky Propylthiouracil (PTU) is for now keeping my thyroid within a normal range so I've not been put on Levothyroxine yet. As far as I know it's always my T3 levels that are off but I haven't ever really had these explained to me or been told exactly that my levels are at any given time. As i said in a previous reply Carbimazole made me physically sick on numerous occasions which is why I'm on Propylthiouracil (PTU).

    I will look into the suggested supplements and see if I can afford to go to a dietitian or nutritionist but money's pretty tight so i doubt it.

    I've now googled the Low FOD map diet which would mean cutting out some of my favourite foods but I guess its worth a go. I am a self confessed Carb-junkie so giving up wheat would be hard as i love bread and pasta and I adore Dairy, especially as cheese, and the odd dessert. Smelly as they are I also love onion and garlic and these along with mushrooms form the beginning phases of a lot of my cooking so again these would be very hard to give up. I've been tested for coeliac disease in the past and lactose tolerance but all came back fine.

    I guess its worth a go if it'll help. At the moment I've been trying to have really simple meals like roast chicken with steamed veg and maybe some sweet potato. I also made a vat of homemade veg soup for lunch to try and keep me away from bread but it looks like some of the veg I put in that (mainly leeks) I should steer clear of.

    I'll look into everything suggested though and thanks for your response.

  • you are on a high dose no wonder you are feeling unwell with it....also saw link to health360 on this website with lots of support for thyroid. The low fod map recipes are really really easy and gorgeous - my husband likes them just as much and doesn't even know what it's about..... giving up wheat makes you feel a lot less tired and can really help because may be part of auto-immune trigger that starts affecting thyroid... there is brilliant tortilla recipe - two sweet potatoes - fry in butter 10 mins or so until soft in pan you can sling in oven, beat eight eggs (serves four or lasts two a couple of days as is good cold) mix in 150 gm blue cheese (good cheese fix) handful or two of baby spinach, salt and pepper, pour in pan - cook until golden for 20 mins on about 160 (keep checking) easy and good for you x

  • Thanks sooo much Tilly, you're a star! I'll give the recipe a go and perhaps add a Low Fod Map cookbook to my birthday list (my 30th's coming up, arg!) x

  • It's called The Complete Low-FOD map diet - by Sue Shepherd and Peter Gibson, lovely pix with each recipe and some of the medical stuff I just went over head but the gist of it feels sound ...another lovely book for cakes is Honeybuns so you don't feel deprived.....x

  • Thanks again. I went out at lunch and got some almond milk, freefrom pasta and freefrom flapjacks to try and my other half is out tonight so I can whip up something to try the pasta without making things complicated. It's a little frustrating cutting out foods largely because until a year ago I spent 19 years as a vegetarian and I've been really enjoying being able to eat anything. Everyone who has tried it can't be wrong so i'll give the wheat free thing a go for a while and see....I just need to figure out what wheat is in...as I'm guessing it's in things I wouldn't think it was ;) This forum and the lovely people on here is helping me stay sane, I'm so glad I found it. Thanks folks xx

  • x how about this, done in minutes...gluten free pasta, 2 tbsp oil (let garlic soak in it a while) thinly sliced pancette (sorry about veggie....) baby spinach leaves, pine nuts, grated parmesan freshly ground black pepper - Cook pasta, drain, stir in 1tbsp oil keep warm, heat remaining spoonful of oil in frying pan, add pancetta, spinach and pine nuts - cook until nuts are golden and spinach is wilted. Add pasta and parmesan, warm until cheese has just melted. Add pepper and splash of oil if desired. x

  • Sounds lovely, thanks again. Don't get me wrong, I love my meat now (well not so much red meat but everything else) I just try and buy as ethically as I can to minimise the guilt. I missed meat too much and my health was awful so I decided it was time to quit being veggie. I'm a bit of a bacon fiend these days much to the amusement of my family and friends ;)

  • I am exactly the same....

  • If you go looking for gluten free carbohydrates you will find that alternatives such as rye and oats are not routinely gluten free because they get contaminated in factory processing... but if you think it through in terms of ingredients there are lots of alternative ways to eat!

  • There's a high chance you'll become hypo after radio iodine treatment. Most people do - but not all! Depends how much function is left to it. If you decide on RAI they are very clear that you shouldn't be close to people for a period of time. You shouldn't share a bed, cuddle children, breastfeed, stuff like that. I think going to work, if you work with others, was also a no-no. It might have been for 5 days - but don't quote me on that!

  • Thanks humphrey. I can already hear my boss saying "can't you just work from home" which isn't the easiest to do when I'm an administrator for a charity....a lot of the work involves actually being in work but we'll see. The whole time I've been dealing with all this health stuff I've had 2 days off at one point and 3 days more recently so I don't really think that my work can complain too much (i hope) as I could be signed off now if I wanted to be (some days I feel I should be). When it comes to treatment time I'll be putting myself and my health first for a change, work will just have to cope.

  • Each hospital has it's own recommendations so the advice you get maybe different from mine. I had RAI some years ago, my youngest daughter was about 3 years old at the time. I was told to stay about an arms length from people, I can't remember for how long exactly but could only have been a couple of weeks at most, I was still able to drive with the children in the car as long as they were in the back seats, I still did the shopping, school run and everything as normal. I didn't actually isolate myself at all, just kept to the appropriate distance. You may have already seen this but if not it's a good guide.

    btf-thyroid.org/index.php/t...

  • Thanks, this is useful. It seems to say at least 5 days regardless of dosage and probably longer as I work in an open plan office with women who could be pregnant. After my next endo appointment I'll sit my manager down and see what options there are.....

  • Hi

    I was offered RAI treatment and the leaflet they gave me told me to stay away from animals and children for at least five days. You cannot share a bed with anyone for the same length of time also you must have your own towels and if possible use a different toilet or clean it every time you use it.

    There was also a bit about travelling within a set time as well. I refused to have it.

    You will feel lousy I have on and off for 3 years but decided that I would learn to cope with that rather than do anything so final. My mother had RAI and I seen what it did to her and although there is nothing to say I would be the same I am not prepared to take the risk.

    There is loads of research about pros and cons of RAI please do your research carefully and do not expect any doctor to tell you the consequences and how it might affect you. The answer you will be fine probably end up on thyroxine and be great, the people on this site prove that is not always the truth.

    Good luck

    Elayne

  • Elayne can I ask what your mum's experience was? Was her's a particularly high dose? I've read about some positive experiences and some negative. Don't worry I have no intention of making a decision without considering all of the facts, I've been doing a lot of research but there is just so much info out there. My dilemma as that I feel so dreadful at the moment on the medication I don't know how much longer I can keep going like this so I'm not sure what other options I have. I appreciate all insight, good or bad so if you're willing to share then I'm happy to read / listen.

  • Perhaps your director would like to offer you use of their house so you can keep away from those people who think there really is an issue? No? I thought not...

    In the USA this has become quite an issue as so many people are having it done as out-patients - then travelling on the bus back to their hotel room. Radiation levels in buses, hotel rooms and even sewers are being investigated.

    You can get a collection of advice and information by searching for this:

    radioactive iodine site:nhs.uk

    (That produces quite a lot of useful hits in Google - other search engines may vary.)

    Take your pick of them! :-)

    Rod

  • Ha ha ha, thank Rod, that made me laugh. It's funny how everyone thinks they're a doctor as soon as you tell them about what's going on. I think the director of our Board was trying to be helpful, her Aunt had some form of radioactive treatment and even had radioactive rods implanted at some point so I think she found it hard to believe how long I'd have to be isolated because her aunt didn't stay away from anyone.....

    I'll get googling as you suggested and thanks again

  • Hi Lynsey, im in a similar position, Ive been diagnosed with graves and I'm just waiting for things to be more controlled before I get RAI, I've actually been off sick from work for about 4 months, that wasn't a choice, I simply could not function, my work. Have been ok with this, my mext appointment is mid november and im hoping to get RAI soon after, the information I got from my endo is 11 days with limited contact, staying arms length away from folk, not sleeping in the same bed etc i hope this helps :) x

  • I had one shot of RAI about 10 years ago, after Graves D flared up for the 2nd time.

    I was only informed AFTER the treatment, when they put a leaflet in my hand, that I must avoid contact with kids under the age of 11 for 5 days, & I must not sleep in the same bed as my husband for 7 days. No other restrictions. When I asked for a definition of "contact" they advised "not within touching distance". A bit vague, but maybe they knew less in those days.

    I had no bad after effects at all, and the Graves hasn't returned since then.

  • Thanks Paige, that's really helpful. I will be quizzing my endo consultant next week so I feel like I have enough information to make an informed decision. Very happy to hear your Graves' is now under control, fingers crossed it stays that way.

  • Linsey83, I hope you can make the right decision. This is something that I might be facing in the future and I am finding this really interesting.

  • The forum's great for getting info and support. Just be careful as some people have really strong opinions either for or against certain treatments...I've been freaked out a bit by some of the stuff I've read.

  • Hiya I was diagnosed with hyperthyroidism / Graves' eighteen months ago, my endo gave me the option of RAI or Carbimazole. He said if it was him he would go for RAI treatment, but for some reason I didn't fancy RAI and opted for Carbimazole. 20 mg to start which was reduced to 5mg. I attended hospital every month for a year, and then in May I was told I was in remission:) I go back to see my endo in November that will be the first time in six months. I haven't felt so good for at least two years. And I am really pleased I didn't go for RAI. I am not taking any medication for hyperthyroidism / Graves. Hopefully this will continue. So please think hard before you decide what to do.

  • I am thinking hard. This is my second bout of hyperthyroidism and I can't take Carbimazole as it made me vomit constantly. So I have to take PTU instead and I feel pretty awful all the time (headaches, nausea, muscle & joint pain, feeling generally exhausted). I don't remember feeling this bad last time which is why I'm struggling to comprehend the thought of persevering with medication when i feel so awful. My life at the moment literally consists of eating, sleeping and going to work. I don't feel up to socialising or doing anything fun, I'm just making myself keep going to work because I have to as its our busiest time of year and we're a tiny charity so there's no one else to do my work if i am off sick. I get that medication can do great things for people because it worked so well for me last time but I'm really struggling to do anything at the moment which is why I'm seriously considering RAI. I don't feel I've been given enough information from my endo at all so I will be asking him everything I can think of when I see him next week.

  • Hi Lynsey, Thanks for your reply ---- it's a shame you can't tolerate Carbimazole, but we are all different in our reactions. My husband said although I was told to sleep in a separate bed for 7 days, I actually decided (neurotic ?) to make it 14 days. I'd forgotten that. I felt tired that 1st day but back to work the next.

    But I wasn't told to use a different loo (difficult in our house ! and in an office) so, either they weren't so clued up 10 yrs ago, or they've now discovered more SCIENTIFIC evidence about sharing loos, showers, etc, ( is there a journal article on this ?) or, as the Administrator pointed out, they're covering themselves against remote rare possibility claims (remember, these are the people who are scared to prescribe antibiotics !) . But my husband has not shown any sign of illness (or radio-activity), & neither have my friend's small kids who I did strictly avoid for 5 days.

    Remember, some Theories change with fashion, or fear of being sued, rather than because of rigorous scientific experiment + evidence.

    I would go for it. I did ! And got rid of the problem for 10 yrs --- so far.

  • Thanks Paige. The whole loos thing worries me as a someone who previously worked for an environmental charity for 4 years, I would feel a bit guilty about adding radioactive waste to the sewage system (sorry gross i know). I'm going to talk it all through with my endo because we only have one loo in the flat so it'd be easier if i packed off the other half and the moggies to elsewhere (wah to the thought of no man or cat cuddles for 5 days). I will give an update after my appointment next Thursday. Thanks again x

  • Hi I took carbimazole for 2 years and now in remission. Feeling good.My endo kept trying to push me to RAI but I have 3 young kids and I do not want surgery due to a bad experience years ago.

    I had times when on the meds when I felt crappy and had muscle aches, headaches etc but I am glad i stuck it out.

    My endo said that it could be up to 5 weeks of non contact depending on the dose needed and then most people do become hypo and if that happened you would be on more meds.

    So all I am saying is good luck and do think before you leap.

  • Thanks. My head is an absolute mess with it all. To be honest I think if i was able to take carbimazole I would be more likely to try and persist with medication but as Carbimazole makes me physically sick I have to take Propythiouricil, which there is a lot of worrying stuff about online and from what I've read it isn't something you're meant to be on long term. I have a lot of questions for my endo so I hope he's ready to answer them. I did nothing all weekend and was starting to feel almost human again but back to work today and feeling like a wreck and oddly emotional like I'm just going to burst into tears for now reason. This would all be a lot easier if I was getting some support from management at work....

  • Classic hyper problem to have emotional health issues and the inability to deal with decisions, problems and or stress. You realistically need to take time off work and rest. Try to avoid stress and eat well. Be aware that you may struggle with being sociable and interacting with people and you may feel very angry over nothing. It is all down to the condition and is not just you.

    Whatever you do I wish you the best and do know that it can improve eventually but it is not a quick thing to sort.

  • I kind of thought the emotional stuff was passed now since my thyroid is under control on the medication. I wish I could take time but I work for a tiny charity and its our annual conference in less than 3 weeks and we only have 3 employees including me so I need to keep going if i can. I've been trying the wheat free diet and cutting down on dairy but it's not helping my energy levels yet and I'm craving wheat :( It kind of feels like I'm just making myself more miserable by cutting out food I like. I have been eating more fruit and veg and minimal processed crap too. I think I'm a bit angry at the little info I've received from medical professionals. It feels like they just said, "hey you have Graves' disease now go away and figure out how to live with it yourself".....

  • Yes I get exactly what you mean with regards to the so called professionals, I honestly think they have no clue. After all treatment has not progressed in decades.

    I think once you have Graves then you will always have a slight emotional shift, I know that untreated Graves can lead to severe mental health issues and so there must be a link. I still have less tolerance to people and less patience and get annoyed more than I used to but the manic rages have all but gone.

    If you love your job then it may be a good thing to cling to but most people find it difficult to work at all.

    You will crave sugars and carbs as your metabolism keeps telling you that you are hungry but this will calm down eventually as you hopefully reach remission. So dont be too hard on yourself with the food. Some things suggested to me was very gentle excercise such as gentle short walks or yoga and having "you" time with candles and a good book. I found that I could not tolerate booze at alll and still dont drink but thats me.

    I hope you feel better soon.

  • Thanks again :) I don't love my job at all but I've got an annoyingly strong work ethic, I really wish I didn't have sometimes. I've always had mood swings and I've been on fluoxetine for years for depression...perhaps the Graves has something to do with that :P I think I'm just extra grumpy and emotional right now because I'm so tired and add in PMS to that and my evil twin takes over. My poor boyfriend, I honestly don't know how he puts up with me.

    I've not been drinking much at all because alcohol these days tends to make me very nauseous. I'm not a big drinker anyway but the occasional glass of nice wine will probably still happen.

    My boyfriend and I made a list of questions to ask the endo on Thursday so hopefully I'll have some answers after that. Here's hoping said consultant has set aside a few minutes to chat because I've got a lot of things I want to discuss.

    As soon as this event at work is over, if I still feel as awful as I do I'll need to take some time off work. I'll just need to hope they understand and it won't make things difficult...

  • Hi yep booze makes me feel sick and I do like a glass of wine. My PMS was also bad and yes I have struggled with depression in the past too. probably is the Graves. I hope your work understands as mine didnt.

  • Well my previous boss wasn't great when I had my first bout of hyperthyroidism, she didn't believe that my mood swings were related and pulled me up for being snappy a few times. I've had nothing from my manager thus far so after my appointment on Thursday I'm going to sit him down and go over things. I think I need to explain to him that I'm doing all I can to keep going to work and that I could go off sick if I wanted to but I haven't so I may need my employer to make some allowances....lets see how that goes....not well I'm guessing. Another reason i feel like I should just go for RAI to try and get me better. I've got a mortgage to pay and I'm the sole earner as my partner is a mature student so there's some pressure and stress there too. Grr to the lack of understanding of Graves'.

  • Yes indeed. Even my family couldnt understand my up and down emotions, so much so that we no longer talk. My mum and sister are hypo and they still didnt get it.

  • I'm really sorry to hear that. I'm very grateful for my wonderfully understanding friends and family x

  • I had RI 33 years ago I had to have 3 doses and went hypo. I wasn't told to stay away from people or animals and my kids are now 40 and 38 and have rarely been ill if that's any help. They didn't hand out leaflets and stuff then though and they also hadn't been doing it very long. The only thing they said was that they didn't normally give it to women of child bearing age as it has effects on birth controls.

  • Hello Lynsey83

    Just wondering if your appointment with the endo was a good experience or not, and I hope that you are feeling a little better today. This thyroid condition is just horrible but it is nice to come on to this site for support. xx

  • Sorry for the delay in replying, hospital appointment went okay….I saw the consultant who answered all of my questions one of which was “if you were in my shoes what option would you choose?”. I decided to go for Radioiodine Treatment so I have a pre-treatment appointment on Monday (11th Nov) and they said I should be able to set a date for treatment then. I told the consultant how awful I was feeling but there was a bureaucratic problem with the blood sample taken by my local health centre which meant they weren’t allowed to test it because it was too close to the last test. So I got bloods done again there and the consultant said my dose of PTU was very high and he didn’t know why it hadn’t been reduced at my last appointment because he was sure I’d have gone underactive. He said to call and get my results the next day (Friday) but to half my dose until then. I couldn’t get the results on the Friday so kept up the reduced dose all weekend and felt almost human again. I then got a call on Monday morning (start of this week) to say that my bloods were normal and to go back to the high dose. I’m completely confused. I’m really just waiting for my RAI treatment date. I tried the wheat-free / reduced dairy thing for nearly 2 weeks but it cost a fortune and I didn’t feel any better or have any more energy so decided I may as well go back to a ‘normal’ diet since it was making me even more miserable. Not sure if that counts as a positive experience or not……feeling a bit lost and very exhausted :/

  • Best of luck with Monday's appointment Lynsey.

    Now that you have made a decision, perhaps you can feel less stressed? This thyroid condition gives us sufferers a real roller coaster ride of emotions.

    No wonder you are feeling a bit lost and exhausted but here's hoping that Monday's hospital appointment will prove to be a good experience for you. Sending gentle hugs and hope that you can have a good weekend now.

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