Graves & endo appointments - how often?

Hi,

I currently see an endo privately as my husband has private medical cover through work. I was diagnosed with GD in December 2010 with a high t4 (81) & all the usual symptoms. I then went on to see the endo every 2/3 months as time progressed.

I came off carb last June & went back to see endo last December, only to find out my t4 was back up to 31 (it had stabilised to about 17/18 on the carb).

I'm now going to be back on carb for several years (my endo seems to advocate radioactive treatment & hasn't mentioned thyroid removal) but I have small kids so can't go ahead with radiation yet (& I'm far from happy to go for either, but that's another post!)

Anyway, my husbands about to leave his job & it's been hard to find another company to take us on, on a like for like basis.

I'm currently deciding whether to continue with private appointments, paying myself, or changing to NHS appointments (no idea if it'll be with the same endo).

I'm a bit reluctant to pay (especially when we're trying hard to cut costs due to new business) as the appointments seem to only last 5 minutes at the most, & it's every 3 months.

Does anyone know what the recommended time between endo visits is (especially when I'm hopefully going to be on a maintenance dose when my levels come down a bit more). Is the 3 month thing necessary (the cynic in me thinks the endo is making the most out of the private health care company) or are appointments usually further apart than this?

I'm off for my last appointment under our current provider next week, so want to broach this with the endo, but hoped someone could let me know if 3 months is normal or if I should try to stretch it to longer.

Sorry for the long post.

Thanks in advance.

5 Replies

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  • hi, i have been getting regular blood tests and follow up app on the nhs every 3mths seing a consultant in the endo clinic,so yes this is a normal amount of time between every app,i also have overactive thyroid and i two cant have radio iodine treatment as have children,am currently having to consider complete thyroid removal which i dont really want and am worried about !!

  • If you email louise.warvill@thyroiduk.org and ask if there is an NHS Endo near you.

    Someone with Graves may pass on some info to you.

  • This is an extract from an article in Pulse Online which may be helpful. It is an answer by Dr Toft, ex President of the British Thyroid Association.

    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.

  • I see my NHS endo every 4 months, but I have bloodtests every 6 weeks at my GP's. The results go to my endo and he then writes to me when doses need to change.

  • Thanks for the replies, seems 3 months is normal. Also, thanks for the NHS list details, will check before I see the endo, he might even be on there.

    Shaws, thanks for that link. It's useful to know you can be on carb for the long term. I'm kind of putting off thinking about the options as I don't like the idea of either, but this seems like a slightly better option (either way I'm going to be on medication be it continuing on carb, or on thyroxine cos I have gone under) so maybe it's a case of better the devil you know & all that!

    It's also interesting to know that any problems with carb would have probably manifested within the first few weeks of re taking, so fingers crossed, less to worry about.

    The joys!

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