Relapsed Graves Disease... What do I do next?

Hi my name is Laura. I'm 27 and was first diagnosed with Graves Disease in February 2012. My T4 was at 77 and my TSH was barely traceable! After 18 months on Carbimazole I came off and went into remission for 6 months until I took a turn for the worst n became overactive again in Feb 2014. I have been back on Carbimazole since and generally feel fine apart from feeling tired ever so often and having bad mood swings and swollen eyes.

However I am constantly feeling the pressure to make a decision about definitive treatment. Do I have definitive treatment or don't i? Do I stay on Carbimazole long term or do I try and come off it to see if I go into remission and then take definitive treatment if it doesn't work for a second time? I am getting myself in such a state worrying about what to do and what is best for me for someone of my age who is looking to have children in the next few years and getting married in a year from now.

I'm so scared of what could lie ahead if I go for definitive treatment and become hypothyroid but I also understand the complications of being on Carbimazole whilst pregnant.

I feel so lost, scared and exhausted trying to make this decision and would really appreciate any help or advice people can give. I don't feel like the endos can give me the answers I need as everyones experience is so different.

9 Replies

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  • Hi laj13

    Sorry to here your feeling so crap I'm posted below you

    I think my graves has come back but it's only a month since I stopped carbimazole so I don't know if I've even gone into remission

    It's scary thinking abou next step my endo said if it comes back I will need to have op as I have got ted I'm scared of making any decision

    At the moment I'm scared to go back to. My GP after 4 weeks and looking silly

  • Don't feel silly. If u think it's overactive again get tested asap so u can start ur medication again asap. I used to feel bad too but if I've learnt anything it's that we have to look after ourselves. Only we know what our bodies should n shouldn't feel like.

    It is such a hard decision to make. I feel like my future quality of life all rides on this one decision n sadly I have little to no faith in the doctors from past experiences so I struggle to take any reassurance from them :-(

  • I know we're you are coming from

    I have no faith in Dr at all I was misdiagnosed 3 times

    Three years ago my husband went to GP who said he had food poisoning in fact it was ruptured bowel and he nearly died 2 years ago my friend went to hospital sent her home said it was flu that was on sat she was dead on Monday from staplaccoi she was 42 with a 3 year old and 6 year old and then last year my daughter who was pregnant she also has lupus was sent home from hospital after she went in with chronic stomach pains

    Collapsed again next day she had a ruptured ectopic pregancy

    So my problems seem insubstantial. To that

    And if they can't get major things like that right what hope is there for us

    Don't me to sound so negative I'm usually quite upbeat

    But I think it's the graves talking again

    Thanks for listening

  • Do not be forced into any decision just because the doctor says so. Read Dr Toft's response below and he was President of the British Thyroid Association who says you can have treatment for years if you want. Also email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article.

  • This is an excerpt from Dr Toft re TED for information You can email louise.warvill@thyroiduk.org.uk for a copy of the Pulse Online article. Do not be bullied into anything you're not unsure of as there's no going back, except of course if our thyroid gland was cancerous:

    4 How does thyroid eye disease manifest itself and how is it treated?

    Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.

    The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.

    The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.

    The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.

    Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.

    But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.

  • This is an extract from an article by Dr Toft who was President of the British Thyroid Association which I think will give you a bit of confidence.

    If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Article by Dr Toft. The following is an excerpt re hyperthyroidism:

    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.

    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.

  • Do not be pressurised into anything you don't want. You can read the extract above from Dr Toft. Some people regret having their thyroid gland removed so it must have a lot of consideration and don't feel obliged to do something you're not keen on.

  • Laj13, Permanent remission in Graves patients is unusual. There's no need to rush into accepting RAI if you were ok on Carbimazole. You can be switched to Propythiouracil (PTU) which crosses the placenta barrier and milk barriers less readily than Carbimazole when you become pregnant and breast feed. PTU isn't recommended for long term use as it can raise liver enzymes but people who don't tolerate Carbimazole will take it.

    If you have thyroid eye disease (TED), RAI can make it worse so consider thyroidectomy instead and don't be pushed into RAI. If you don't have TED RAI is fine but will make you hypothyroid within a few months. Pregnancy should be avoided within 6 months of RAI.

  • Thank you Shaws and Clutter I really appreciate ur advice and information. Luckily I'm not being pressured into anything in fact it's quite the opposite they refuse to have an opinion in it at all. The only pressure I feel is that that o put on myself to makesure I make the right decision. But I don't know wot the best option is for me particularly as Im in the middle of organising our wedding and hoping to have children in the next few years.

    As far as my eyes are concerned although I have the swelling of Graves eye disease they have sed that it's virtually non existent and mark me as 0-1 on scale of 0-10 so I'm hoping I'd be OK with RAI.

    So hard. Such a headache :-(

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