Hello after 8 months on Carbimazole my doctor has talked to me about the alternative iodine treatment for my Thyroid. Could someone who's had this treatment please give me some feedback on what the results were after treatment i.e did they feel worse, better no different.
Many thanks
i was in Carbimazole as part of block and replace treatment for Graves. I was probably taking it for that time - I took 40mcg Carbimazole daily along with thyroxine which was gradually increased to 100mcg daily then it was decided that I should stop so one day carb and thyroxine - next day and ever since - nothing.
I was told that should I relapse I would be offered RAI - no way did I want that. Mainly because I had been allowed to become hypo during my treatment and I felt absolutely awful. It was every bit as horrible as my Graves but in a different way. I also felt that giving me RAI was just a way for the hospital to get rid of me and pack me off to my own GP where I felt there was no guarantee at all that I would ever be given the level of drugs or even the type of drugs I would need to keep me feeling good.
So I spoke to my GP who told me that I could not be forced into having RAI and if I refused their offer of RAI the hospital could not refuse to treat me, so I made up my mind that should I relapse I was going to continue on B&R for as long as I possibly could on the grounds that even if I no longer had a thyroid gland I would still have Graves because it is an autoimmune disease.
If you read Dr Toft's little book 'Understanding your Thyroid' you will see that some people stay on Carbimazole for extended periods of time with no ill effect. I have decided I am going to be one of these people should I relapse.
I think a lot of people on here would say not to do it unless you have absolutely no option but then many of the people who use this group do so because they are having problems and there are people in the group who have had RAI done and who are fine.
I just know that there is no way I would want my thyroid to become permanently underactive, it would have to be the very last resort for me. Sorry to ramble and I hope this helps. Hopefully others will come along with more advice.
Hi Thank you for your response. I have heard a lot about B & R do you feel ok on it? I am taking Carb every other day at the moment as 20mg each day was making me nauseous, only been doing it a week so too early to say if it is helping
Hi Lisa, I had RAI Sept last year. My symptoms disappeared completely within a couple of weeks. I had blood tests every 4 weeks & still do at present, I went underactive 3 months after having RAI, I was unaware until Dr phoned that I was now underactive, she said I must be feeling terrible but I felt no different. She started me off on 50mg Levothyroxine & increased it every 4 weeks. I have been taking 125mg for about 9 months now & seem to be stable at that doze. For me RAI was the right thing to do, Carbimazole was affecting my liver & that is why RAI was recommended. Taking Levothyroxine everyday is easy for me compared to the awful symptoms I had being overactive. I do understand some people are against RAI & it is not for everybody.
Hi Dusty Thank you for your response. Yours is an encouraging story. If I thought I was going to have the same reaction I would do it tomorrow. Do you feel well now?
Hi dusty2
Sorry to hijack the flow but you said that carbimazole
Was affecting your liver my last bloods showed elvated liver and I have. Been working myself silly ever since
As when I asked gp if it was the carbs effecting liver she just said I don't know I have just had another lft test yesterday and I'm not sleeping worring about them I did write a post earlier about abnormal liver tests but didn't get much response were your liver tests very elevated and are they ok now
MMnn this is interesting what are the symptoms of elevated liver?
Not sure carbimazole has sent me from hyper to hypo so I have had so many different symptoms I no longer know which is which lol all I know was doctor wasn't very intrested after my last blood test showed I was hypo just cut my meds she just kept on about liver results and then left me hanging im seeing endo in January so may be I will know more then
Hi Rush, my bile ducts were damaged during Gall Bladder removal which affected my liver. It was only the 2nd week of taking Carbimazole that my Lft's were very abnormal & was told to stop them right away as these can cause liver problems. My LFT's have always been elevated since the OP but not like they were taking Carbimazole.
Hi Lisa 59
I as treated with carbimazole for hyperthyroid , after a few months Endo suggested RAI treatment. I asked him if it meant no more pills and he said yes or maybe just a little one.
How I wish I had known about this site before I went ahead..
The treatment itself was no problem , just a bit of a sore throat and of course segregation from your loved ones. ( my husband stuck a Bio Hazard sticker on the bedroom door) lol
I very quickly went underactive and so began two years of trying to get Levo dosage right.
I strongly suggest you explore all you options fully before you would even consider this!
Good Luck
Pp
Hello thank you for your comments. This is a big decision I don't want to go on feeling like I do but don't want to feel worse. I have dreadful stomach problems & just want to feel better again. I dealt with breast cancer a few years ago and that was a walk in the park compared to how I feel now
Do you have Graves Disease Lisa? (raised antibodies with low TSH and high T4 - apologies if you know all that)
I felt ok on Carbimazole, I took 20 mcg for a month with no real change, then 40mcg for another two months before I saw the endo by which time I had become really hypo - I was told to lay off the carb for a few days but was started in levothyroxine right away) I felt really ill when I was under active, very cold, my hair fell out and my nails disintegrated to the stage it was painful to use my hands which is why I would not like to take the remotest chance that I might end up underactive. I've nothing against RAI really, I just don't feel sure there is any guarantee that I would be able to get enough levo or T3 or whatever it might take to keep me feeling well and once your thyroid has been killed off you seem to be on your own and at the mercy of your practise finances.
I would definitely want to go back on B&R if I relapse because once I reached my optimal dose of Levo I felt very good - obviously I'd have to rethink if I wasn't able to take it, there is no way I would want to take it if it affected my liver or anything like that and also if I had something like thyroid cancer I wouldn't be able to choose.
I stopped all thyroid meds last November so I'm not taking anything at the moment. Well I'm taking B12 - I was at the bottom end of the B12 range with a family history of PA so I supplemented myself even though the endo said my levels were ok. also when I started Carbimazole my pharmacist told me to take vitamin C with it so I take 1000mcg slow release Vit C with zinc.
Are you being treated by an endocrinologist or by your GP?
Wow you know your stuff! I'm being treated by my GP but if I go for the Iodine treatment I would be under the Endo. I think I must have Graves although this has never been discussed. One of my eyes has gone all sort of starey. It just doesn't look right. That is interesting about the Vit C & B12. I don't have a clue about the T numbers its all gobblygook to me. It sounds like you have been through it. Am I right in saying you are not on meds & are doing ok now?
Lisa, I suggest you ask your GP whether you were tested for Graves antibodies and if not, to do a Thyroid Receptorantibody or Thyroid Stimulating Immunoglobulin test to check.
When you have been on Carbimazole for 9/18 months there is a good chance your hyperthyroidism will have been regulated and you may enjoy a long period of remission after coming off Carb. There is less likelihood that it will be a permancent remission if you have Graves.
See an optician about your eye. If you have thyroid eye disease (TED) you should be referred to an opthalmologist. RAI is contraindicated with TED as it can worsen it. Thyroidectomy would be a better option if remission fails or you have Graves and TED.
That's right. I became ill two years ago in November, nearly killed myself in the car one Tuesday night, I knew I wasnt well, pounding heart plus practically every hyper symptom on the TUK website. I went to the doctor on the Wednesday morning, had bloods taken in the Thursday morning then came home on the Friday afternoon to find a phone message from my doc saying I had a very overactive thyroid with antibodies, she had left a prescription for carb at reception, made an appointment with an endo for me and told me to make an spapoointent for another blood test in a month. After a month on carb my numbers were pretty much the same, my TSH hadn't moved and my T4 had only changed slightly. Shortly after that I got a letter from my endo - my appointment wasn't until the end of March! She told me to double my Carbimazole and get a prescription fir more from my doctor. That was how I came to be hypo by the time I got to the hospital, with hindsight I should probably have had another bloodiest after a month on 40mcg.
When I saw the endo ( well senior houseman) he didn't mention Graves until he said something to me and I said 'what like in Graves?' And he pointed to me and said 'yes, Graves! That's what you've got! Graves!' I really think if I hadnt said the 'G' word he wouldn't have mentioned it either. After that it was just checking and adjustment every six weeks or so until it was time to stop the B&R.
About four weeks after each increase of thyroxine I would feel like I needed more - first time I felt like I had hyper symptoms but someone on here said I was pribably needing an increase in my thyroxine and that proved to be correct. My GP wasn't keen to increase it in case I became hyper again and gave me something to stop the palps to tide me over until I saw the endo again and she raised my thyroxine. Next time that happened I sort of argued my corner and my GP did increase it for me.
I thought people who are hyper had to be seen by an endocrinologist. My GP started me on Carbimazole but that was only what the hospital would have done and my GP and endocrinologist share notes so the endo knew what was happening with me all along.
I wouldn't make any decisions about any sort of treatment until you have spoken to an endocrinologist and don't let anyone rush you inti anything either. Read as much as you can about your condition. This site is a positive mine of information and is full of knowledgeable supportive people.
If you have eye problems you want to avoid RAI if you can, or at least be aware , you should adk to be referred to an eye specialist who specialises in thyroid eye disease. My eyes feel awful at times, reall, really dry, sometimes they are so dry they water, they sting, the muscles feel stiff and sluggish and I get blurred vision, sort of vertical double vision a bit like an extra image underneath the writing as the credits roll on the TV. A hot squeezed out face cloth held over your eyes also feels great. My eyes aren't that bad, I really just need to be much more disciplined about putting in my dry eye drops but I'm naughty and stop as soon as they feel better. Thing is because they don't protrude everyone I have seen - different endo / endo's assistant every hospital visit - has just said 'you're eyes are fine, no sign of TED' and I say 'But ... ' and get ignored.
Make sure you ask for and keep a record of the results of any blood tests you have had done complete with the lab ranges and try to get your Vitamin D, vitamin B12, ferritin and folates tested too. You need them to be well up in their ranges to help your thyroid recover.
It's also worth writing down any questions you want answered when you go to see the endo. I write mine in a little notebook alongside my test results. No one ive seen has minded, I just say that if I don't write things down I will forget what I want to ask - that goes or in my case - went - with the thyroid territory.
Good luck, make sure you get to see an endo even if you are not wanting RAI - like I said I'm no expert but I think if you are hyper your treatment really ought to be organised by an endo. Liz
Poor man! I was undiagnosed for 2 years & thought I would be sorted after that ha! It sounds like trial & error with every individual.
Reallyfedup - Lisa hasn't even got as far as an endo - it's her GP who is treating her and suggested RAI! And I couldn't agree with you more with what you've said.
Hi Liz I'm so glad I looked at this site before I went ahead with it. You are not the first to ask why I haven't been referred to an Endo. Like you I know my eye isn't right but my optician said it was fine. I'm certainly thinking twice about RAI now. Thank you so much for your input what a lifeline this site is!!
Thank you. I'm seriously reconsidering it now. And thank you to everyone else who has commented. So glad I checked here first xx
Totally agree
Thank you so much. I did wonder about my BC treatment- I had 4 weeks radiotherapy after surgery. Vit C & B12 on my shopping list tomorrow!
Hi Lisa,my story is almost the same as fruitandnutcase but I am one around 10 momths behind.I finished my medications in August of this year and remaining in normal levels so far.I have also decided to go back on meds if I go overactive again instead of opting for RAI.This is mainly because once you go underactive as most do after the iodine it is very difficult to get GPs to get you on a correct replacement thyroxine dose. I also have Graves disease and have the same eye problems as fruitandnut.You need specialist eye treatment if one of your eyes is staring.By the way my GP told me he HAS GOT to refer every overactive case to Endocrinology .If you use the search button and look up any posts by girlscout you will fing lots of info regarding Graves if it turns out to be what is causing your overactive thyroid. Learn as much as you can.Ask your GP receptionist for a print out of your blood tests , put on here and members will help you understand them.Good luck..pipps
I found taking Milk Thistle has helped get my liver function back to something respectable. Somewhere along the line I have read that Carbimazole will throw up a rogue result - three out of four being fine and one being too high.
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