?? No idea?

Hi, I've just found this site and thought I could get some advise from people going through the same thing.

I was diagnosed with an over active thyroid about 3 mths ago and have been prescribed Carbimazole to regulate it. I've been told that these meds are not suitable to take on a long term basis due to the possible side effects and therefore, once they'd regulated my thyroid, I'd need to have it removed or take an iodine/radiotherapy treatment to kill it off basically. Either way, I'd end up with an under active thyroid which apparently is easier to medicate long term.

I've read such awful stories about how people cannot seem to be given the meds they need and how tricky it is to get the meds accurate. This is now getting me down; the thought of having to go through this. I'm feeling fine at the moment and my symptoms of my over active thyroid have gone. I'd like to get some perspective and maybe hear of some good news stories that this process can be straight forward and not be as bad as I'm reading :-)

14 Replies

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  • You are being lied to. There are plenty of people who take thyroid-suppressing drugs for a long time.

    You can't be forced to have radioactive iodine treatment or have your thyroid removed, it is always your choice, if or when you get it done.

    I realise hospital consultants like doing this, because it gets people off their books. But do you really want to lose your thyroid for the convenience of a doctor? Hypothyroidism is no picnic. Doctors like to say it is easier to medicate, but they really mean for them, not the patient.

    Another thing... doctors can't refuse to treat you if you decide to continue with prescription meds to suppress your thyroid.

    Another point... I don't know what circumstances require it to be used but there is an alternative to carbimazole if you don't get on with it. Sorry, can't remember what it is called.

    ----------------------------------

    There are, however, some people who think having their thyroid removed was the best thing they ever did, and they feel better having got rid of the hyperthyroidism for good. So opinions differ.

  • Hi, . How were you diagnosed? Have you had antibodies checked? Which ones? You could have Graves, which sends you hyper, though it can go into remission on carbimazole, or you can stay long term on carbimazole. ( too late to look for a reference..... I'm just on my way to bed). The other possibility is that you have hashimotoes, where ou can go hyper for a while as the thyroid is killed off, but tgen it stops and you go hypo. ( this happened to me).

    Under active thyroid can be easy to medicate, all you need are sufficient doses of the correct medication. I'm on a good dose of dessicated thyroud and have no symptoms of hypothyroidism.... The problem is that the docs often give us insufficient amounts of the cheapest option they can find and persuading them otherwise is the difficult bit. ( i self medicate having given up with the doc and thyroid)

    It would be a good idea to get antibodies tested so you can work out of you are likely to get problems again..... If the doc is unwilling, you can get them done privately.... thyroiduk.org.uk/tuk/testin...

    Xx

  • Hello JoCl I am in the same position as you. Diagnosed hyper 7 months ago. Prescribed Carbimazole high dosed then reduced. Have now gone into hypo and Carbamazole stopped. Goiter grew under too much Carbimazole. Next step, blood checks mid March.... then advised needle biopsy and perhaps either op or iodine treatment. THEN..... i get really worried reading about the mis treatment when becoming permanently hypo.......this is for life! I just dont know what to do for the best, wait and see...operate or iodine treatment?????????

  • Argh bless you :-( well I was initially taking 20mg carbimazole and then after 8 weeks it was increased to 30mg due to a blood test showing some improvement in my hormone levels.

    I've had a 2nd recent blood test and awaiting the results.

    From the things I've read on this subject, it appears that Carbimazole is prescribed for 12-18mths before any next steps are considered. I'd heard only last week that, for some people, a course of Carbimazole is all that is needed and then the thyroid can return to its normal function?? I was never told this could be possible??

    I would say however that it is easy to get things out of proportion when reading loads of stories from people on forums. There are less success stories posted as many of those people are probably not even on the forums so it's difficult to gain perspective - plus eveyone has their own coping levels and how they deal with things.

    I myself have frowned upon RAI - if I have to keep away from people due to radioactivity, what is it likely to be doing to my own body!!??

    I'm trying to take one day at a time but I am reading up on the terminology, hormone types, meds etc so I'm fully informed and can challenge gp's on their suggestions if need be. Knowledge is power :-) good luck and hope all works out well for u :-)

  • Leener71, Antibodies.... Get them checked so you know exactly what you are dealing with.

    G

  • Thank you to bith of you. Galathea..... what am i looking for when i ask for antibodies???

  • Hi think very carefully before agreeing to Rai humanbean is right you can be on and off carbimazole for years, I have graves and was treated on carbimazole for 12yrs before having Rai,ask your endo if your overactive thyroid is due to graves they should have told you if this is the cause mine did. I wouldn't have Rai unless you feel you want to,don't be bullied into it endos just want to make it easy for themselves as once you have had it and are hypothyroid and on levo they will take you off their list and back to gp for treatment.

  • Heres a link about antibodies on the thyroid uk website.

    thyroiduk.org.uk/tuk/about_...

  • i was given no choice and mine was removed, i had no idea there were other ways to deal with thyroid/goitre my op was a success but had no follow up and became very under active and very ill. I wish i had researched and looked into my options. Drs do what is easiest and best for them (sad but true) i am now one of those trying to balance no thyroid and all the rubbish that comes with it, its partly my own fault for leaving my precious health in someone elses hands, i had no idea how useless they were until it was too late. You are in the position of being able to make an informed choice xx

  • I'm sorry to hear of your situation. What symptoms/issues are you having as a result? X

  • I am now on t3 only (long story) i have great days, good days and awful days. Pain is still my worse symptom in my legs, feet and knees, nothing like it was but still dictates what i can do each day. I still get exhausted some days, anxiety etc but i am much better than i was. I feel its such a balancing act, i am not treating an under active thyroid, i have no thyroid so i am solely reliant on meds i have yet to be back to how i was before operation.

    I wish i knew then what i do now i would have made diff decisions, that includes changing my dr researching endo etc i didnt know i had choices then i just did what i was advised because i truly believed they knew what they were doing and had my best interests as priority. I check everything i am told now, which is a nuisance, i also do my own tests, buy my own vits etc i wasted valuable energy and time trying to get my dr to do his job.

    Just be sure what you want, do what is best for you and you will be fine, so many on here really know a million times more than the drs they have been thro it and found what works xx

  • also this is not a quick fix illness so you have time to think about your best options xx

  • Thanks Binkie, I still have so much to learn about this. I'm fine on my meds at present, no symptoms or anything so I'll push to keep it that way until I'm fully informed of my options :-)

  • My friend preferred her Graves symptoms to the after effects of RAI treatment, as she is now hypo & undermedicated.

    She was refused surgery as RAI is easier, & now has digestive issues, PA, & a constant sore throat, amongst other chronic health issues it caused.

    Sorry this isn't positive. Don't be fobbed off with the easiest option at the hospital you attend.

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