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Thyroid UK
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Just found out I have a thyroid problem

hi all,

My doctor arranged a blood test as for the last 5 weeks I've been suffering from nausea, palpitations, blurred vision and weight loss.

The test has come back "consistent with hyperthyroidism". The GP has referred me to a Endocrinologist. This is on the NHS and I assume will take months.

My results:-

T3 was 19.2 pmol/L (2.6 - 5.7) "high"

TSH = 0.01 mU/L (0.30 - 4.40) "low"

T4 = 39.1 pmol/L (9.0-19.1) "high"

I'm almost certain its graves disease given my and my family history of autoimmune diseases.

I was hoping for some advice on what to do and what is to happen next?

Really appreciate any advise,

Al

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Hello allyemanny

If you are in the UK, these are the guidelines doctors follow found on the NICE website.

cks.nice.org.uk/hyperthyroi... As you can see, the speed of referral is left to the GP's clinical judgement but there are recommendations about treatment while waiting for a referral.

If you don't hear anything follow it up. Things sometimes get stuck in NHS systems.

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You are very hyperthyroid, an fT3 of 19.2 is extraordinarily high. Your doctor is correct to refer you to an endocrinologist. However, they should request an urgent appointment due to your very high hormone levels. See cks.nice.org.uk/hyperthyroi... for recommendations. Note the comment 'the urgency depending on clinical judgement', your levels indicate it is urgent, so check if your doctor has requested an urgent appointment.

Also, see the points about prescribing a beta blocker and carbimazole whilst you are awaiting an appointment. If your doctor is unsure they should telephone an endocrinologist for advice.

As regards possible Graves', the sooner your treatment is started the better the outcome. It is the antibodies that cause Graves' and not the hyperthyroidism. An endocrinologist will check your antibody levels.

Your high hormone levels will induce anxiety (as if you don't have good reason), so if you start to feel really anxious try to bear in mind this is a symptom of hyperthyroidism.

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Allyemanny,

You are certainly very hyperthyroid. You will need TSI or TSHR antibodies tested to determine whether the hyperthyroidism is due to Graves but if you have a family history of Graves it is likely positive.

Has your GP prescribed Carbimazole or Beta Blockers while you wait for your endocrinology appointment?

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Thanks for your very quick responses.

The GP prescribed me some anti-sickness tablets. I cannot take beta blockers as I have asthma unfortunately.

I will ring the clinic tomorrow to check on the urgency of the referral - thanks for this suggestion.

I am very anxious at present!

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Your GP should refer you to an endo, because GPs cannot test for Grave's antibodies. But, while you're waiting, I would strongly suggest you ask them to test for TPO antibodies. It could just be that you are having a Hashi's 'hyper' swing, rather than true hyperthyroidism. And, if that's the case, those high levels are only temporary, and you will eventually become hypo. You need to know.

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Do you think I should go private with this? Or will the urgent referral be soon?!?

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Also should my GP have perscribed something for the hyperthyroidism?

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GPs can prescribe anti - thyroid drugs (usually Carbimazole), but sometimes it seems they need to consult an endocrinologist first, and usually the GP’s prescription is kept at a level which should stop you getting worse, rather than helping you to really get better (until you get to see the endocrinologist).

If you can’t have beta blockers to take the edge off the process, you are probably feeling really awful, so it’s worth asking about this option.

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It would be a very good idea to prescribe something for the hyperthyroidism as you can't take beta blockers. At worse it would just make you hypo and if that happened you could just reduce the dose.

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My FT3 and FT4 levels were higher than yours on diagnosis. My GP prescribed carbimazole to start with and referred me to NHS endocrinologist. I subsequently found out that the waiting list was around 20 weeks at my local hospital so I asked to be referred privately and saw an endocrinologist within 2 weeks. I honestly don’t think I’d still be here if I’d waited 20 weeks. You also need to get your bloods checked every 4 to 6 weeks in the beginning as it seems to be quite common that the doctors will overmedicate and make you hypo which happened to me. I suggest you do a lot of research and become your own advocate. I was very shocked to learn that even so called specialists don’t know very much about graves so I’ve had to learn to manage myself. I’m 2 years into my journey and I’m not right but a lot better than I was.

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Thanks for the info Karen. I think you've made my mind up to go private.

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Just to update I saw a private doctor last night. He suggested a take 40mg Carbimazole daily and test my thyroid again in 6 weeks.

He said it was probably graves disease but there is no rush for an antibody test as it doesn't affect treatment. I should ask for an antibody test when I get my bloods tested (at the GPs)

He also was more upbeat on my prognosis and suggested I might start feeling better in 48 hours.

Thanks everyone for the advice.

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personally I would want to have the anti-bodies tested :-) Hope you soon feel better ....

It may be better to post the above in a New post/thread so more people see it .

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