bloke &replace

Hi folks this is my first post. Have Graves disease past 6yrs had decompression of eyes,successfully,however have put on 5 1/2stone. feel dreadful. Changing endo to another hospital fir second opinion. This current one reckons safe to be on B/replace up to 12yrs.Thyriodectomy l feel.my only option. Dizziness sweats getting worse not better after all this time. and so depressed with weight.

Any advice most welcome.

eryn

5 Replies

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  • Have you been kept hypothyroid with too much block and not enough replace?

    What are your thyroid test figures looking like? Whilst tou still have a thyroid you can negociate medication, but once you have it removed, you are wholly dependent upon what the doc gives you.... ... Not a decision to take lightly.

    G x

  • hi g

    st present supposed to be within range. they didn't give me print out results on the last two test which incidentally were months apart. Feel like endo just didn't care. when l stressed weight gain was told to eat less. l was 11st8 when this all started extremely fit. took part in 10k"s now l find difficulty in doing housework. Hence reason l requested second opinion different hospital. l do feel hypo, breathless dizzy NO energy. symptoms of heartattack, but know fine its meds. Just pray next doctor listens, tests & knows what he's doing.

    carbimazole really not ideal this length of time.

    Thank you for taking time toreply

    eryn:-)

  • There are certain opinions that say you can stay on Carbimazole long term if you don't have side effects from it. Might be worth asking if you can have some liver tests done, just in case.

    It does sound like you have been kept hypo. I think it is harder to get the balance right with B&R than it is on Carbimazole alone. How much of each are you on?

    Would you consider using just Carbimazole and titrating your dose (slowly) down? I found it was much better for me than B&R (which I never felt well on) Make sure you get bloods done at least every 8 - 12 weeks.

    You need to get your results, then you can start comparing your results with how you feel and your symptoms.

  • B&R didn't work for me either, I asked for RAI.

  • I think that until you get a look at your own results, and can confirm you are optimally medicated, you don't have any idea what the source of the problem is. Being 'in range' is useless, as you can still be very sick at those levels.

    One option for looking at results, if you've been treated for a long time and been on a number of different dosages, is to request your entire medical record. I have recently done this. They can charge up to £50, but I have ended up with a number of test results I did not even know I'd had, and it filled in a few gaps for me.

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