I have Graves ft3 & ft4 are now in normal range, but TSH is still low my endo wants me to continue on 20mgs of Carbimazole but my ft3 & ft4 is getting lower & lower at the very lower end of normal range & is causing unpleasent symptoms. Endo is also encouraging RAI. I am very confused does TSH take a while to recover? Should I have RAI?
Suzanne
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Chester2
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Hi I think the endo is being good. Not relying on TSH, you are possibly like me If you feel right., I have an immeasurable tSH, so low, always have. always needed my treatment to be on the T4 and Free T3, in fact my FT3 needs to be near the top of range, or I feel awful. We do have to watch it is not pushed over. I hope that helps.
But Jackie, according to what she says, he IS relying on TSH. He wants her TSH to rise at the expense of her FT4 and FT3 and she's starting to suffer.
Suzanne, I have never been in your position, but I do know that a lot of people regret having RAI, and wish they'd hung on to their thyroid. It's a decision only you can make, but in your place, I would ask for a second opinion.
Another thing to do before agreeing to RAI is to discuss with your endo his plan for treating you after. Because a lot of them are very keen to whip it out but afterwards don't have a clue how to proceed. And this endo of your seems to be hung up on the TSH. You need to know that he won't be dosing you by your TSH but by your symptoms and that he will be giving you enough T4 - and hopefully T3 - to allow you to live well.
Hi Grey., i did actually mean that, sorry if not clear, I am having a tough time at the moment, and with that an dyslexia, sometimes not as clear as I wish to be.
Sorry I don't know much about Graves, but I think fT3 and fT4 are more important than TSH. It sounds to me like you need to reduce your carbimazole slightly so that your fT3 and fT4 go up higher in the range, as you maybe suffering with symptoms of hypothyroidism now rather than hyperthyroidism. Can you discuss this with your endo - do you trust him/her? If not perhaps you could ask your GP to refer you to another endo for a second opinion? Sorry I can't be of more help. xx
This is an extract by Dr Toft, ex President of the British Thyroid Association which may be helpful. I am hypo and TSH is the same as yours.
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.
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