Ive Been given choice of Radioactive iodine or operation. But VERY little other information. Relying on Google. They don't even know which one has the shortest waiting list or approximately how long I'll be waiting as in months or years. Established iodine treatment doesn't always work first time, assuming it doesn't How long before 2nd try? Or is it back to the start if the waitingvlist? And that's back to HOW LONG IS THAT! Any advice greatfully received.
Graves - choice of Radioactive iodine or opera... - Thyroid UK
Graves - choice of Radioactive iodine or operation. But VERY little information. Any experience of others please on either option?
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KimKarenCat
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TiggerMeAmbassador
Welcome aboard
Very sensible to do as much research as you can, either option is going to leave you hypothyroid and in the position of needing to replace and balance your hormones which also isn't the easiest route as if you need combined treatment consisting of T4 and T3 it can be a fight... which part of the country are you in?
We do hear of many who regret either of these treatments as hypo's are so badly treated and wish they had given the suppression drugs more of a chance 🫤
What are your current thyroid levels?
To be honest I don't take it in when they say the levels. I just ask if it's gone up or down. Been on 40mg at most on 10mg now (Carbonizol ). I'm in Leicestershire.
It's in your interest to become an expert in interpreting your results or they'll just keep bouncing you up and down as they tend to alter doses by too much
Results should be on your records? Have you got the NHS App? If not they are obliged to give you a printed version
Leicestershire isn't prolific in prescribing Liothyronine 🫤which is something else to consider
I actually know a lady in Leicester who is using carbimazole her endocrinologist is trying to get her to have RAI. She has one large nodule and is stable at the moment. You can be on carbimazole for years as long as you have regular blood tests. I have told her this and that is her decision after researching it on various support sites.
helvellaAdministrator
What a rubbish approach by them! Though we have heard such things all too often.
It reads as if you are being pushed into making the decision quickly - as well as with insufficient information.
I can see from your profile that you have Graves. But if you explain a bit more, you might get more and better replies.
How long since diagnosis?
What are you being treated with at the moment?
Started 2023 but not sure when as was dieting so weight falling off no surprise. Dr did tests eventually started me on Carbonazol. October 23, didn't see specialist till about June 24 who told me I have Graves. Got abit of TED and horrible Derma lumps on legs, bad bowels exhausted most if the time.
Hello KimKarenCat and welcome to the forum :
If you have - to quote your own words - ' a bit of TED ' -
RAI should not even be offered as an option as RAI is known to exacerbate eye issue with you experiencing further pain , discomfort and facial distortion, the psychological aspects of which are not considered.
RAI thyroid ablation is a toxic substance known to be taken up, to a lesser extent, by other glands and organs in the body and with an increased risk of cancer to small bowel and breasts.
I detail below the most recent research -
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
The most rounded of all that I researched is that of Elaine Moore - books and website - elaine-moore.com
I'm with Graves and post RAI thyroid ablation 2005 and now with Graves - as it is an Auto Immune disease for which there is no cure - and now with Graves + TED - and without a functioning thyroid and self medicate as the NHS do not offer all the thyroid hormone replacement treatment options - as they once did - which leaves many forced into private blood test on order to test the vital T3 and T4 thyroid hormones and paying for medication in order to have some QOL:
Have you been referred to a specialist ophthalmologist to monitor your eyes ?
Please do your research - back in 2004 I too was given a leaflet from the BTF - and back then I knew no different - I think the BTF leaflets are somewhat economical with the truth though believe the RAI treatment is now in tablet form rather than as a drink but believe it is only now that the longer term consequences are being acknowledged with some researchers doing the necessary verifying of the ramifacations years on.
I was treated with radiation pill 20 years ago for graves and the treatment was successful . I was developing heart problems so I didnt really think about any other option . It was a success and I have been on the same dose of thyroxine for many years . I’m 56 now healthy..not overweight.. my heart is great and no other related health problems . I’ve had no problem . It’s a stressful time .. I was working as well as being at uni with two small children but it sorted me out . It sounds scarier than it it .
Thank you for that. It gives me hope.
I hope you get sorted soon x
I also had radio active iodine treatment around 25 years ago and it was a great success, I wish I had done it earlier. I’ve had Graves since 12 years old and that’s over 50 years ago ! Over that time my heart function was affected by all the meds and relapses, so my advice to anyone would be get rid asap either with surgery or RAI.
You have had Graves’ for a very long time so I understand why you had no choice. I have had a couple of remissions that have lasted years and I felt well then. I am 65 now and I am still fighting on. My heart is ok and I have no intention of getting rid of my thyroid it is a personal choice!
I am pleased you had a good outcome others unfortunately have not
helvellaAdministrator
Now I can see you are on Carbimazole, I'll post a link to a blog I've written which tries to explain some of the difficulties in managing that medicine.
helvella - Splitting Carbimazole Doses
A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.
Last updated 14/09/2024
PurpleNailsAdministrator
I was told id be treated with RAI after my first specialist appointment. I have a hyper nodule which isn’t expected to resolve.
Has your Graves been confirmed with positive TSI or Trab antibodies?
Are you levels well managed? Are you monitored consistently, how often? Is your dose adjusted appropriately by FT4 & FT3? Because we often hear of treatment being quite poor & unwell patients told definitive treatment is therefore the only option.
Many manage on long term carbimazole as remission for graves can occur years into treatment.
When I tried to ask questions about other treatment options, or about RAI, I was passed a leaflet about it & told everything I needed was in there. It wasn’t. & while it’s factual it emphasises the best more expected outcome and glosses over the potential complications.
Yes was confirmed. I do blood tests at gp then chase for results which I get between 2-3 weeks later and new dose proposed.
If you obtain a copy of results you would be able to track your results & ensure your carbimazole is right for you.
You may be on too high a dose which is why you tend to skip doses, but really to get the best out of treatment the right daily dose & small adjustment will help control symptoms.
Do you have any alternative but to do this?
I have Graves’ and no way would I have my thyroid killed or removed. I know so many women who have struggled to regain their health afterwards. If you have no choice I would have it removed. RAI can give you long term problems in my opinion
Have a look Elaine Moore’s site she had RAI and now is fighting stomach cancer. She blames RAI. I am not trying to scare you because it might be fine but do you want to take the risk it might happen? pennyannie has had RAI ask her about it
Just to add I was told to have my thyroid zapped with RAI 15 years ago I refused and here I am 15 years later still with my thyroid I have obtained remission a couple of times now and you could too Doctors want you to become hypothyroid because it is easier for them to treat
I spent 18 months on block and replace before coming off when my WBC was low. I then had 2/3 years of feeling 'normal' before my levels started to creep up again. I hadn't done much research at the time and was told that RAI was the answer.
I've rarely felt 'well' since RAI and seem to be having to adjust my medication dependant on weight, activity etc. etc. It was a real struggle to try and feel better until I started to do my own research and added T3. The NHS was awful.......
If I could go back in time, i'd have thought a lot more about having RAI.....
You should have been given a third option ie. staying on ( probably ) a low dose of Carbimazole. As others have said you need to do your own research to decide what is best for you. Analysing your symptoms/ dosage/blood results since starting treatment are important indicators as to whether staying on Carbimazole ( which was my choice ) would be right for you. It can be overwhelming but there is no rush and lots of help available on this forum to help and support you.
So many hyperthyroid patients are told they must have RAI or a thyroidectomy, but there is a third option - continue taking carbimazole or PTU permanently (or for as long as you need it). Doctors can't refuse to continue prescribing.
