shelly12

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hi everyone,,just looking for some advice please., nearly 2 years ago i ws diagnosed with overactive thyroid,

i had gone down to 5 and a half stone,,anyway started on carbimazole been on them since and seem to have been ok,,put weight on last saw my thyroid doc 2 month ago and he said its improved so cut ablets down,,but ive lost a few pounds in weight,,nothing drastic yeserday i started with the achy muscles in the back of my neck,,didnt think much about it,,but today went in town shopping and i got the shortness of breath,,shaking ,nervousness and cold,,also not been sleeping too good lately

could it be back ,even tho 8 weeks ago i was told it had improved

thankyou to anyone who can help

marie

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11 Replies

  • Posted

    yes it could be back although you may just need to increase your dose.

    You could also have gone Hypo as symptoms are similar

    2 years is usually the max you will stay on Carb before coming off it and seeing if you are in remission. The alternative is trying block and replace or RAI.

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  • Posted

    hiya

    thankyou very much for replying,,ive not heard of block and replace?please can you give me some advice on that

    thanks again

    marie

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  • Posted

    Block and replace is where you take Carb to stop the thyroid working and Thyroxine to replace the hormone.

    Some Consultants use it and some don't, personally it didn't really work for me, still too difficult to control.

    I have had Graves twice, with a 30 + year gap in between. First time I had to have partial surgery then second time RAI.

    Now on thyroxine as I am underactive but after 8 years on that things are going wrong again so there is no end to this retched disease.

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  • Posted

    Hi Marie. I've had treatment with block and replace and it worked fine for me. I had a relapse of Graves after forty years, and as I couldn't stay on Carbimazole for more than eighteen months, and it was almost certain that I would have another relapse if I came off it I've just had RAI. It's too soon yet to say whether it's worked or not.

    It's a horrible illness.

    Take care.

    Marigold.

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  • Posted

    thankyou very much for the replies,,sorry for late replies back,,

    oh realise now i have had the block and replace now you explained what it is

    they told me i have to have the thyroid removed or the rai

    i dont fancy the op,,lol but want the rai as it sounds so much easier is it? but im worried about not being able to be around my 2 little grandaughters as i see them every day, how long do i need to stay away from them?i keep reading all different answers to it

    thanks so much

    marie x

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  • Posted

    hi ,i am currently going thru rai now and i have a 5 year old daughter,i was told 10 days no close contact and then a further 10 days i can have 15 mins close contact a day but i think it varies
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  • Posted

    Hi Marie. The rai is a doddle. Just swallow a capsule, sit in the waiting room for half an hour (so much for keeping away from people), and then go home. I had to come off the carbimazole and thyroxine a week before, have steroids for two weeks before and two weeks after as I have eye problems related to Graves. No fish for a week before and two days after as it has a lot of iodine, and would interfere with the treatment. Back on thyroxine a week after the rai. It varies from endo to endo though.

    I have a little granddaughter who's sixteen months. The information sheet I got from the hospital said no close contact for 21 days, but then I was told that that referred to parents, and as long as I avoided close contact for a few days and didn't have her sitting on my knee for long periods she'd be fine. Anyway we've decided to play safe and I'm not going to see her for the 21 days. I'd give anything to be able to give her a cuddle though. sad

    Barry, are you ok after your rai? I didn't feel very well last week, shakey and fidgety, and hubby said I was dead ratty. I'm sure he was wrong. smile I feel a lot better now though. Blood test next week, and I see the endo so should know if everything is going ok.

    Take care everyone.

    Marigold.

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  • Posted

    hi barry thankyou for replying, must be hard with not being able to have as much contact with you 5 year old

    hope all goes well for you,,

    21 days! now that did make me panic till i saw it was just for the parents,,lol phew i see mine everyday cant even last 21 hours never mind 21 days,, my 3 year old is a nannys girl she just wouldnt understand why i wasnt there for her,

    but a few we will both just have to cope with that :-)

    sorry for so many questions but what damage can it cause if your around children

    your all very kind taking the time to help so thankyou

    marie x

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  • Posted

    hi margaret like marie said it is 21 days for parents but i am told i am allowed 15 mins a day close contact after the first 10 days , hi marie its been a week now since my rai,i felt really edgy on sunday and i was having palpitations last night but havnt been feeling to bad today,my sleep is not great and my eyelids feel dry and abit sore ,have you had any other symptoms since the rai? take care
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  • Posted

    hi barry

    ive not had the ria yet,,iv got appointment in january so ill see what he says then,hope your feeling better soon barry

    mariex

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  • Posted

    Hi Barry. I'm pleased you're feeling a bit better. I'm not sleeping well either, too fidgety. I'm pleased when it's morning and time to get up.

    It's nearly two weeks since I had my rai, and I'm feeling much better than I did last week. I was very bad tempered.

    I'm having palpitations too. I've had them for a long time, but they're worse at the moment. I had a heart scan in May and everything was fine, so I'm trying to ignore them My eyelids are ok, but my eyes tend to be a bit dry and sore. I use eye drops (artificial tears) and they help a lot. I get them on prescription. I'm not very hungry at the moment either.

    Take care. Hope everyone else is ok.

    Marigold

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