Anyone else on here with Graves & hyperthyroidism?

Hi, I was diagnosed with Graves & hyperthyroidism around 4 years ago now. My NHS endocrinologists are useless & want me to have radio iodine but I'm sceptical as I've heard of a lot of people then going on to be hypothyroid due to this. I'm getting extremely desperate now as my symptoms are just getting worse despite being on PTU & blood results apparently being normal. I can only seem to find support pages/private specialists in underactive thyroid disorders - does anyone know of any specialists who also treat graves/hyperthyroidism? Many thanks.

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  • Unfortunately, there is no way of reducing thyroid hormone generation accurately. So to be effective most people with Graves do indeed end up on replacement hormone - whether a full dose or just supplementing what they are still making. This applies whether the approach is radio-active iodine or surgery. Indeed, it can be difficult to get the dose of PTU or carbimazole right.

    I am concerned about your being on PTU for so long. It is well known to cause problems in the longer term including liver damage. I hope you have been advised:

    Counselling

    Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, jaundice, dark urine, or pruritus develop

    medicinescomplete.com/mc/bn...

    (Free registration is required for that link.)

    And are you receiving regular liver tests?

    Do you have you blood test results? (Include the reference ranges of you are going to post them, please.)

    You are entitled to them:

    thyroiduk.org.uk/tuk/NHS_In...

    I shall leave the other aspects for those with experience to answer.

    Rod

  • Hi CharlS28,

    I'm curious, what symptoms are you experiencing at the moment? Also you definitely need a copy of your blood results. I'm hyper too, been on Carbi for about 1 year.

    Hampster

  • p.s. This is a good website for all things Graves, if you haven't already seen it:

    elaine-moore.com/

  • Thank you for your responses. I haven't been on PTU the whole time as things stabilised after 18 months the first time, however it returned around Christmas time so I've been on it again since then. Never been offered a liver test though so I will request one. Hamster, my symptoms first time round were extreme weight & hair loss, recurring thrush & exhaustion (nothing bar the weight part has ever changed), this time round I'm getting dreadful palpitations & ectopic beats which also aren't going away even though I'm apparently stable & on beta blockers! Totally at the end of my tether!

  • I think you really need to know what your blood test results are, and post them on here. I would also see if the doc will check your adrenals, as that could be a factor. Vitamins and minerals are also important, the big 4 to get tested are B12, folate, ferritin/iron and vitamin D. You mention thrush, do you have other gastro symptoms? If yes it might be worth trying to eliminate candida, there's loads of stuff online about this if you google it. Personally I'm really interested in what's triggering my Graves, rather than the doctors view of "oh, lets just knock the whole thing out". Things I am trying are a gluten free diet, sorting out all the vit and mineral deficiencies, avoiding stress and too much exercise, I'm also looking into heavy metal sensitivity as I have lots of dental work. It's a journey you have to go on yourself, but I really believe you can make a difference by being proactive and reading as much as you can, this website has helped me a lot.

    H x

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