So far, touching whole forest of wood, feeling good and blood results look sound....

My TSH is 1.06 (range 0.27 to 4.3)

T4 16.3 (12 - 22)

T3 - 4.1 (3.9 to 6.7)

Feb last year my TSH had flatlined, T4 nearly 70. Diagnosed with likely Graves. I was on 40mg of carb plus propanalol and underweight. Instead of block and replace opted for up and down titration of drugs.... now only on 5mg of carb every other day (sometimes every two days) I feel well, I ran a 10k in 64 minutes and getting to grips with the 7kg I put on (feels all around my middle!). I was told I have 40 per cent chance of remission and the endos have really listened to me, they aim to take me off carb to see what happens in August. If the figures go haywire again I'd like to continue this treatment. I am reluctant to have RAI or take levothyroxine. Has this worked for anyone else? Mostly I feel confident about what I am doing - my better lifestyle (zero gluten..) - but it's surprising how nervous I get when I ring up for blood results!

4 Replies

  • If you are feeling good that's great. Dr Toft of the BTA says in an article:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

  • thanks, I have a feeling I will take this to show endos if necessary but they have been very amenable so far!

  • How you feel is the most important thing I was diagnosed in 2011 crashed and then started cabimazole could only tolerate 5 mg but went into remission after 6 month have been fine mostly since but just had to go and have some more blood tests today as haven't been great for 2 weeks the range is so wide they may come back normal but my pulse is 95 at rest and usually 68 so we will see Trust your body to tell you when it is well and glad you have found helpful medics xx

  • thanks for getting back to me - let me know how blood test goes...... have you been taken off carb after six months.... I am hoping to drop it in August and wonder if some weight will finally come off, just that last half stone!! x

You may also like...