It does suggest testing TRAb to confirm Graves', so this will help people push for it if it isn't offered routinely (in quite a few places, it seems likely you will need to wait for the endo to order it, which is ok so long as it gets done within a reasonable timescale).
It doesn't mention FT3, although I think I've had this done every time my endo has ordered thyroid tests, which seems to be the case with many hypers. It's important because FT3 may stay high even when FT4 is within range.
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Valarian
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Hi I’m new to this forum, I was diagnosed with overactive in April this year, I was put on 40mg carbimazole but then I went underactive so I’m now on 40 mg carbimazole and 100 mg levothyroxcin, I had a test to see if it was graves but not got any results as yet, I see the consultant again on 17th October, I was just wondering if it is graves can it be cured ? Or are you on tablets all the time, thankyou x
Unfortunately, Graves' can't be cured, but it can be 'encouraged' into remission with anti-thyroid drugs such as Carbimazole in approx 50% of cases. Remission can be permanent, in which case you won't need any further treatment. Unfortunately, relapse can happen at any point; it's most likeely in the first four months, but could happen many years later. There are several people on this forum who've relapsed within the first 10 years, and my endo mentioned a case which had relapsed after 18 years. There is also a related condition called Thyroid Eye Disease or TED (you should be asked about your eyes at every endo appointment) which can occur at any point. Most cases are mild and require nothing more than monitoring, and perhaps eye-drops, but it can be serious. The best way of avoiding this or reducing severity is not to smoke, so if you do, now would be a good time to stop.
A course of anti-thyroid treatment typically lasts from 12-18 months. Either the dose will start high, and be reduced over time ('titration'), or it will be kept high enough to suppress natural thyroid function altogether, and thyroid replacement (levothyroxine) will be prescribed - this regime is known as 'blcok and replace'. Outcomes are thought to be similar, and each clinic will have their own preferred approach, although B&R is contraindicated for anyone who is pregnant because of the longer-term high dose of carbimazole. The main benefit of B&R is that it's much easier to keep thyroid levels stable, but you will take a lot more carbimazole, which can have some nasty side-effects, and probably won't have any real idea whether treatment has been successful until they take you off the Carbimazole at the end of twelve months (although your TRAb levels should give an indication).
In the UK, if people who have successfully achieved remission relapse, they are usually offered a second course of antithyroids. If they don't achieve remission, or if the second course fails, the endo will usually recommend a 'definitive' treatment which will wholly or partially destroy the thyroid - the options are Radioactive Iodine (RAI) or surgery. In either case, you are likely to need thyroid replacement for the rest of your life. The thinking behind this approach is that the potential side-effects of the disease itself (eg impact on the heart) and the drug-treatment (eg the potential impact of ant-thyroids on the liver) are less of a concern when treating people who are hypo than hyper.
Some people do choose to remain on long-term carbimazole, with or without the sympathy or their endo. This is really only practicable if thryoid levels can be maintained in range with a low dose, eg 5mg/day or less, but if you find yourself in this position, it's worth considering - you can always opt for RAI or surgery at a future date, but there is no coming back once your thyroid has been destroyed.
One thing I would recommend is to keep asking your endo questions about your progress, treatment and options. I've been on Carbimazole now for fifteen months, and have seen a few different consultants in that time. Although they haven't all volunteered a lot of information, I've found that as soon as I began asking questions, they were happy to share the information they were looking at (not just the bare test results, also graphs over time) , explain their thinking and discuss options.
Good luck - and feel free to ask any more questions on this forum. There are quite a few of us around who are, or have been, hyper.
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