Decision time!

Hi folks

I was diagnosed with Graves 3 months ago, found myself in hospital 2 days after the diagnosis with A-Fib and a heart rate of 185 bpm. I`m 63 and its thought because of age is why I ended up with A-fib. I was given carbimaole 40 mg- now reduced to 15 mg, warfarin and beta blockers but I didn`t take those for long as they made feel faint.

Anyway I saw an endo who arranged a 24 heart monitor, which came back great with no sign of A-fib now. Endo also arranged for me to see an eye specialist - and again everything is fine, I saw the eye doctor yesterday and my eyes are ok.

I`ve had /got other health problems going on unconnected to the thyroid and I`m tempted to go straight for the RAI and get this health issue out of the way ( or being controlled better.) I`ve been doing my research on the internet and there`s mixed feelings about the RAI - but taking my age and other things into account and now hearing that the 2 latest blood tests showed my liver function as borderline - I`m wondering if in my case it may be best to get it done. Any opinions either way will really be appreciated, as you all know this is a tough one to decide. Oh and by the way even though my levels are `normal` I still feel tired and not myself most of the time.

many thanks

Joy

5 Replies

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  • Joyliz,

    It helps members to advise if you post your thyroid bloods results with the lab ref ranges (the figures in brackets after your results).

    I think it is premature to discuss RAI within 3 months of starting treatment as Graves patients can find their thyroid regulated after 6-18 months on Carbimazole and may experience a period of remission which, although it may not be permanent, may last some time.

    RAI or surgical thyroidectomy will inevitably make you hypothyroid which you should not believe is relieved by taking 'a little white pill daily'. It can take a considerable time to find an optimal dose of Levothyroxine on which you feel well.

    RAI can be contraindicated in Graves patients as the antibodies can go on to attack the eyes and cause thyroid eye disease (TED) or worsen TED if you already have it.

    I suggest you research very carefully before agreeing to the destruction of your thyroid gland. My sister had RAI after several years on Carbimazole followed by 11 months remission. She is doing well on 100mcg Levothyroxine but her TED has worsened.

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

    healthunlocked.com/thyroidu...

    healthunlocked.com/search/R...

  • I'm older than you and have Graves - I was diagnosed two years ago come November. I stopped my block and replace last November and have been pottering along ever since. I'm due to go back and see my endo in early October.

    I was told that if I relapse I will be offered RAI but I really don't want it. As part of my treatment I became hypo and I felt as bad with that but in a different way as I did when I was seriously hyper so there is no way I want to end up with no thyroid and the possibility that I could end up permanently underactive.

    I just don't have faith that I would be given enough levo to keep me at a good level - I know from my travels through the ranges that I feel best when my TSH is pretty low - and now it seems that should I need it to feel, good getting T3 won't be that easy either nor will it be easy to get NDT.

    My heart rate etc settled down once my thyroid was sorted out and once I was on the correct amount of Carbimazole and levo for me I felt very good. I spoke with my GP who said I can't be forced into RAI or even be refused treatment if I don't so unless I develop an allergy to Carbimazole or PTU then I want to carry on with that for as long as possible should I relapse. My eyes are dodgy too, very, very dry, watery and stiff muscles blurred vision double vision / after image effect if I read too much usual symptoms of that but fortunately no sign of bulging.

    Obviously if for any reason I can't continue with antithyroid meds then I would have to reconsider but until then I want to hang on to my thyroid for as long as I can. The thing is that even without a thyroid, I will still have Graves.

    But then, my liver is fine - or I haven't been told it isn't.

    Good luck with your decision.

  • Can I just say that it was more likely the AF was down to the Graves not your age, it is a well known symptom.

    As has been said, 3 months is no time at all to be being offered RAI, your Endo needs to slow down!! One can see that the Carbimazole is obviously working as your heart is now ok and eyes also.

    Before you decide on any permanent options please do lots of research. Even if you have RAI/surgery, you will still have Graves disease.

    How about trying to lower your dose slightly, and see how you feel then. Do it gradually, ie try 10mg and keep to that dose for at least 4 weeks and keep a diary of symptoms. Then try 5mg. Dont try and rush the process.

    I am now on 2.5mg (after a very long time) four times a week and feel quite good. I did try B&R but it didnt seem to suit me and I never felt well.

    I definitely will not be having anything permanent done to my thyroid! The choice is yours (as opposed to your Endos!) but please research all the options first.

  • Thanks everyone for your replies. Coincidently I met a lady today who had RAI without ever having Carbimazole, she was a private patient and her consultant advised her to have it done. She told me that she felt so much better with no side effects and she hasn`t gone underactive in 2 years either.

    I can tell by my symptoms that I`ve gone overactive again - after 3 months on Carbimazole my levels never seem to get `right` for me and I`m still feeling very ill. If I wasn`t feeling this way, I`d hang onto my thyroid , perhaps I`m expecting too much to soon?

    I have an appointment with my endo on 10th Sept, and I`ll ask loads of questions and before then I`ll keep researching. Many thanks

  • The Liver Enzymes become high when you go Hyper thyroid..i have had this happen on overmedication for hashi's/hypo.

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