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Hello everyone, I've been for my scan and they said they need to double my dosage if carbimazole, they want to start me on radioactive iodine therapy, I've had a blood test today because I've been getting really bad side effects off the medicine, Ive been advised to stop it for the weekend and see if they continue, could anyone please tell me what to expect when I got for this therapy thing? Every time I google it all that comes up is cancer research websites and I'm really worried xx

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  • Hi Monicagellar

    I am sorry you are so worried especially as you keep coming up with 'cancer' in searches. Not everyone has cancer I am glad to say. If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's Pulse Online article and in it he says that some can continue for a years on carbizamole. Please be careful about RAI, particularly if you don't need it. Some people are rushed into it and then regret. So read as much as you can and also I am sure members will respond with their own experiences.

    I have hypothyroidism.

  • If the carbimazole is causing side effects you could try PTU instead. Some people get on better with it. How about beta blockers too.

    Don't rush to have the radio active iodine, its not really a therapy, its designed to kill off your thyroid and leave you hypothyroid... This is then dealt with by giving you replacement hormones. It sounds simple but there are numerous stories of people who wish they had fought harder to keep their thyroid gland.

    Do you have Graves' disease? HAve the antibodies shown this? or is it maybe a flare up of hashimotos? Get your blood test results, post them on here ad ame absolutely certain that you know exactly what is wrong before agreeing to any meds or operations which cause irreversible changes.

    You work better with all bits intact and taking them out or killing them off can be just an easy solution for the doctors but not the best solution for you.

    I'm about 80% sure that thyroid cancer is not treated with radio active iodine.... Its treated by surgical removal of the thyroid.... So that would make it more likely that you problems are auto immune.

    Keep asking questions on here, plenty of people have been through similar situations.

    Xx. G

  • Galathea, yes, you are correct, thyCa is surgically removed and patients with a high risk of recurrence are given RAI to kill off any remnant in the thyroid bed and to mop up any stray cells released during surgery.

  • As Galathea said, keep asking questions. I have just now come across this excerpt and it is very apt as many have had RAI when they didn't have cancer but had problems thereafter with their medication. So, this is an excerpt. We have to read and learn as much as possible in order to get well:

    People who have lost their thyroid entirely simply cannot restore the original T4-3 relationships that they had when euthyroid and healthy. Some can get to normal FT3 by TSH-suppressing doses of T4, but others can't get there with any T4 dose, because their peripheral enzymes can't convert enough T4 to T3. This finding is all in a paper we've submitted and hope will be accepted soon.

    healthunlocked.com/thyroidu...

  • Monica, as the others have said radioactive iodine ablatement (RAI) isn't therapy, it destroy yours thyroid gland. As the cells die off it is possible you will initially become more hyperthyroid but you will sooner or later become hypOthyroid ie under active and then you'll need thyroid replacement hormones for the rest of your life. I would really recommend you get a 2nd opinion before agreeing to RAI.

    RAI is contraindicated for hyperthyroid patients who have Graves antibodies as it can cause the antibodies to attack the eyes and if you already have thyroid eye disease (TED) it can make it worse.

    Carbimazole, like all drugs, can have side effects but they often wear off and after a couple of months of the Carbimazole regulating your hyperthyroidism the dose is usually reduced considerably and easier to tolerate. After 12/18 months on Carbimazole many hyperthyroid patients can come off it and enjoy remission which sometimes temporary and sometimes permanent. Propylthiouracil (PTU) is used for Graves and hyperthyroid patients who don't tolerate Carbimazole.

    healthunlocked.com/search/R...

    healthunlocked.com/search/R...

  • Thank you everyone, my consultant said she wants to talk to my parents about the therapy thing, I find out my blood test results Monday I'll keep you all posted xx

  • hi there monica, my lady was - at 1 point - advised to opt for rai , but after my own research I was firmly against it in her case because , in my own view its the same as surgery ---- if its cut out you need to replace it somehow --- at the time she was on about 40+ tablets a day ......she is now down to 11.... NO LEVO and only 5mgs carbimazole DAILY ...... so from our experience rai would have had the exact opposite effect she is now outside the tunnel [ although its taken 2 yrs ] with a reasonable healthy life .....hope that this may help you .......alan

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