Radioiodeine or op?

[Bagpuss123]

Hi. I'm new here and have a question for some advice please. I have graves and my thyroid has hone overactive for the 3rd time. The docs are saying it needs to come out. I'm unsure which to have- op or radioiodeine? I have a 7 month old baby and couldn't bear not seeing her for 2 weeks if I have the iodine but worry about op!

[shaws Administrator]

I cannot answer your question personally but this is some information from Dr Toft who was President of the British Thyroid Association and is an excerpt from a Pulse Online article. If you would like a copy of the article email [e-mail].

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.

[susymac]

Only you can make the choice. You may not be able to touch your daughter for two weeks or whatever, but you should still be able to see her through glass or whatever the restrictions are. It would also take time to recover from surgery (tho I dont know the implications of surgery) but assuming you are in hospital for about a week and most likely not really fit to do much for a week or two after, How much time do you think you will be spending during your recovery with your daughter. I suspect that over all you would be fitter, quicker with the RAI but again not from personal experience.

Maybe some people who have had either will comment and let you know what the recovery period from either is to help you weigh up the options.

If it was me I'd go for the RAI over surgery any day given the choice, but whichever you go for bare in mind that you will likely feel lousy once your thyroid levels hit rock bottom before you are back to an optimum dose of thyroxine

[bantam12 in reply to susymac]

I have had both surgery and RAI, both have advantages and disadvantages, only you can decide. You need to find out the advice from your hospital about RAI but you aren't shut away for weeks, I carried on as normal the only restriction being no "close contact" so no cuddling of babies and small children. You go to the hospital, take a tablet, go home, carry on doing what you do but with a few restrictions, simple as that. It may be tricky with a baby as they won't understand. You could stay on Carb until your baby is older and easier to manage, I delayed a short while until my youngest was about 3 years old.

My surgery was a long way back but it's not a complicated op, I think you are only in a couple of days now and obviously you don't have the restrictions afterwards.

[Hidden]

How were you on the anti thyroid meds before? Is there any particular reasons why the docs want it out this time, i.e. goiter etc? If it was triggered by this pregnancy would it be worth giving it a chance to settle down with another course of carbimazole? I was just really wondering how you felt about it all really. Hampster x

[Bagpuss123]

Thanks everyone! I think its because its the 3rd time and my levels were very high (64). I've been on 35mg for a coup,e of months and levels are coming down slowly. The doc said I could postpone having anything and keep taking carb for years but I'm unsure if this is a good option, as in good for my body. On the last 2 occasions I took meds for 18 months. Was a couple of years between each relapse.

[Hidden in reply to Bagpuss123]

Have a read through this fantastic info, in particular the sections on "Timeframe & Remission" and "Relapse":

livingwithgravesdisease.com...

Also covers RAI and surgery options.

H x

[nightingale-56 in reply to Bagpuss123]

I too would opt for surgery as against RAI. I had a rather rushed Sub-total Op while 14 weeks pregnant with my daughter who was born without problems. Prior to this I had treatment with Carbimazole and Neomercazole, which only worked for a short while. Two years previous to this op I had a son born with hormonal problems. Good luck with what you choose. At the moment I am on 75mcg Levothyroxine (Mercury Pharma), and have been for the past 16 years.

[samgold]

Hi there.

I had RAI for graves when my son was 1. Contrary to most reports, the radiology team at the hospital advised me to stay away from my son for 5 weeks to ensure he was not exposed to excess radiation. My radiation levels were checked weekly to ensure this was correct. I did it, and it was emotionally very tough. A few months later, I had gone over active again and had a total thyroidectomy. Recovery time was a couple of weeks however my calcium is now permanently low as a result. I think this was due to surgery after RAI which made it a trickier op. if I had the choice again. I would opt for surgery over RAI. I also want to point out that I had another baby 2 years after surgery with no problems. Good luck

Sam

[Bagpuss123 in reply to samgold]

Thanks! I'm wondering if I need it at all!?

[Maddiethemadwoman]

Hi,

I was diagnosed with Hyperthyroid 9 months ago + had RAI in dec. (so soon coz I reacted to the carbimazole). I have 2 children my youngest was 8 months, my oldest 2.5 I was in isolation at home for 4 days afterwards. My parents took the kids away for the 4 days as I was told to keep contact at a minimum + I didn't think they would understand.

The actual process is quite easy. The low iodine diet before hand horrid. But a lot less evasive than surgery. It has been hard since but mainly because I am having a hard time finding the correct medication + dose of synthetic thyroid. I don't think I had any effects from the actual radiation.

As everyone says it is your decision. Hope my comments have helped

Maddie

[Snap33]

I am in the same situation and im struggling to decide what to do. My consultant keeps talking about my white blood count could go down and I would end up in hospital on antibiotics, he really seems to be pushing for a decision on RAI or surgery.

[Bagpuss123 in reply to Snap33]

Did he give you a reason as to why it should be removed? Mine didnt! I don't know why I can't keep taking tabs till its back to normal then see how I go. It may not relapse!

[Snap33 in reply to Bagpuss123]

He is just saying that because I have relapsed the block and replace treatment is obviously not working and wont work in the future so the next step is either radioiodine or surgery. I am quite happy to stay on the block and replace.

[jes99 in reply to Snap33]

I Scap33

I was just wondering if you made a decision in the end re: RAI or surgery. I have the same dilemma and am seeing a surgeon next week but I am really not sure about doing anything as I feel quite good at the moment and have a feeling I could be sending myself on a worse path!

I have been overactive for 3 years now but it is being contained by a daily dose of 20mg of Carbimazole plus fortnightly white blood count injections.

I am hoping you are well.

Jackie

[Snap33 in reply to jes99]

Hia! Im still on block and replace, at my last hospital appointment I saw a different endo and he said that he would recommend surgery for me because of the after effects of RAI on my eyes. I haven't made a decision at all, im quite happy staying on the carbimazole and don't feel bad at the moment. I really don't want to be rushed into making what I feel is a huge decision and I think the endos know this, but it dosent stop them from pestering me about it each time I see them.

[jes99 in reply to Snap33]

I completely agree. I have been hassled for the last two years to have RAI they are now telling me I am ruining my health by being hyper and taking Carbimazole and have made an appointment for me to see a thyroid surgeon. I feel fine at the moment and have a bad feeling that having my thyroid will set me on a path of bad health issues aaaagh!!!! I wish someone would be honest with me and tell me if really is bad to stay like this.

[Lynsey83]

You poor thing, that is such a tough decision. I had the same decision with Graves' and a second bout of hyper but I don't have children (hope to one day). I opted for RAI and had my treatment on 6th Dec this year. The truth about RAI is that yes you have to be pretty strict and my instruction card said I should limit ALL NON-ESSENTIAL CONTACT with children and young people from the date of treatment until 29th December (6th-29th). I was allowed back to work today and I won't lie to you, the isolation bit is really hard; being in the same house as my fiance but having to stay two arms lengths away is horrible especially when all you want is a cuddle.

I guess you have to ask yourself if there's someone else who can look after your little one for basically 3 weeks, could Granny / Grandpa help? I understand how hard it would be for you to be away from your baby but you'll just have to decide what's best for you. I felt that the surgery was too drastic and was scared about the vocal chord risks (although these are low) which is why I went for RAI. I couldn't keep taking PTU as it made me feel so awful.

You also have to remember that the surgery is fairly major so you may be in hospital for up to 5 days anyway so you'll need to consider that too.

I really don't know if I can help, I'm not a mum so I can't imagine how hard this decision must be for you. If there are any questions I can answer please just ask. Most importantly please don't let anyone rush you into making a decision or let anyone push you towards a certain treatment; it has to be your decision. Anything I can answer please just ask. Take care of yourself, Lynsey x