Graves' disease sufferer

Hi. Have had Graves' disease since 2013, well confirmed that year. Have suffered, as far as I can work out since my early 20's, so probably had it for 30 yrs. Had two rounds on carbimozole then iodine treatment a year ago Now on 150mcg of levothyroxine and completely fed up with the whole situation. Like rotting away from the inside. Hope can help others and to be honest look forward to speaking to others in the same boat.

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  • Firstly the damage that years of Graves does to the body is bad enough add on RAI and you have big trouble

    Firstly what blood test results do you have ?

    Have

    Ferritin

    Folate

    B12

    Vit d3

    Been tested because unless they are all halfway in their ranges your body cannot even utilise the levothyroxine and convert it into the t3 that every cell needs to function

    Also after Graves and RAI your body has been sensitised to very high levels of tyroid hormone and can simply never again cope on the so called "normal" that the medics dictate

    My husband started with Graves and then surgury but spent miserable years on both levo and t3 at what most would call very high dosage

    Your 150mcg is very likely way too low

    However for my husband and many others the only route to health is via Natural Dessicated Thyroid /Armour/ERFA/nature thiroid/Thyroid-s

  • Hi. Thank you for replying. My endo and gp only test my TSH and T4. I asked about T3 and was told to stop reading the internet and let the doctors deal with it. My vitamin d has just been tested which was very low and that's it until September. I feel rather abandoned with it. My gp felt that 150mcg was a high dose!!! It's seems to be the disease from hell.

  • Hi snoddyoddbod love your name.i know just how you feel I had Rai 7yrs ago after having graves for20yrs,i am also on levo trying to get dosage right can be a pain as gp's don't understand that your tsh is needed to be suppressed and t4/t3 in upper quarter to feel well.have you had vitamin levels tested b12, ferritin,folate and vitD as I have found it dose help to have these at optimal levels. If you need any advice with anything I'm sure all the good people on here are only too willing to help as we all know what it feels like living with a sick thyroid.

  • Hi my sister gave me the name when I was small and it stuck! Seems quite fitting now. Lol. My endo and gp will only test the TSH and T4 I got told after I questioned the T3 situation to stop reading the internet and let the doctors deal with it. The endo has just tested my vit d level which was very low. I don't go back til September for a review. Feel rather abandoned!

  • Any more put downs on T3 tell them you got the info from an NHS choices website ...

    I can but suggest you self tret with NDT because for my husband and many people who like you had Graves then RAI or surgury levothyroxine simply does not work and whats needed is the completeness of natural thyroid which contains t1 t2 t3 t4 and calcitonin

    Its my belief that Graves damages the tissues that would convert t4 into t3

    And the prof who diagnosed my husband told me not long back he was not surprised that NDT worked far better

  • Thank you Your words are very comforting feels like I'm not as bonkers as I first thought.

    This NDT, do you take it along side the levothyroxine or instead of? And do I get it from the NHS ?

  • Instead of levothyroxine and its not easy to get on NHS

    See my PM to you

  • I can totally relate to the T3 enigma My recent visit to the endocrinologist was not very helpful either. I was told that T3 is simply not needed to be tested as our body will always convert T4 into T3. Wonder what they'd say if they too suffered the debilitating condition that we all have to live and love!

    PS - what a creative sister you have! My nickname as a child was snodgrass....but snoddyoddbod is sooo much better!! and funny too - you can't help but smile when you actually say it!

  • I'm not sure I love it. It has been given two other names. The "Lonely disease " as at times I feel utterly alone with it Then it gets called "What size will my body be this month disease". Or the disease of three wardrobes as well. One month I was hyper and thin, the next on suppressants and normal ish, the next hypo and like a hippo!!!

    I can remember my dad using the name snodgrass!!! I wonder if my name of snoddyoddbod came from snodgrass!!!!

  • That must be awful! I can't imagine the misery of such a yo you weight issue (in addition to the really horrible symptoms of Graves) You are doing well to stay upbeat and cheerful. You know, I find when I am out walking with my two dogs, I find I am staring enviously at others who have a physique like mine once was, and can walk at a good healthy pace (like I used to be be able to do).

    My father was the one who bestowed the nickname snodgrass on me - perhaps it was fashionable in the 60's!

  • It's truly a crap disease. I was on holiday this year and there was a long steep hill in and out of the town. I was being over taken by people 20yrs older than me. Outwardly to others you look fine but inside there's a riot going on and bits are falling apart

    I was born in the 60's so I guess it must have come from that time!

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