Advice/input please

[cc251254]

Diagnosed Hyper/Graves (with anti-bodies) in 2013. Was on Block & Replace for over 2 years (Carbimazole 40 mgs & Thyroxine 75/100 mcgs), meds were stopped and I did not remit so treatment started again but with the Endo pushing me towards RAI. I refused and asked to go on the Carbimzole Titration treatment. So meds were stopped on 4th April until 18th April when I started taking 10 mgs Carbimazole daily. Results for blood test taken on May 10th:-

TSH 13.21 (0.34 - 5.6)

FT3 5.6 (3.0 - 5.0)

FT4 10.4 (7.5 - 21.1)

I realise that it's only just over 3 weeks that I've been on only 10 mgs of only Carbimazole but what do these results suggest ? More/less Carbimazole ?

Thank you in advance

[shaws Administrator]

Someone who is/has been hyper will respond. I will give you an excerpt from Pulse Online doctors magazine and it is by Dr Toft who was President of the BTA.:-

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.

[cc251254 in reply to shaws]

Thank you for your response shaws. I have a copy of that particular excerpt - I went "armed" with it when I saw my Endo after he had tried scare tactics into "giving in" to RAI by telling me that I couldn't take Carbimazole long term because of the danger of the white blood cell problem it can cause and the mortality rate of 1 in 300. I do have regular full blood counts done and also know that there are many many patients on this forum who have been on low dose Carbimazole for as many as 20 years so that is not too much of a worry for me.

[Alexkjones in reply to cc251254]

Hi I've just been through the same thing. But my endo has been great and has said I can stay on carbo long term. Currently taking 20 mg a day of carbo for the last month since my remission failed. Does anyone have any advise on how best to titrate this dose down over time and how slowly this is done? Thanks Alex

[shaws Administrator in reply to Alexkjones]

Alex, I would put your question onto a new Post altogether so you'll get mor responses. I am hypo.

[Silver_Fairy]

cc251254 - how do you feel on that dose? Any hyper symptoms? I would leave it at least another 3 - 5 weeks before testing again.