Thyroid UK

Do I have Graves?????

Hi, wondering if anyone has a similar experience or advice. I was diagnosed with hyperthyroidism last week, my results are: TSH- 0.02 (0.35-5.50) SERUM FREE T3- 9.2 (3.5-6.5) SERUM FREE T4- 30.9 (7.0-17.0)

My ESR is 3 (0-20)

My TSO antibody is 5.9 (I don't have the range for this only that I was told it was fine)

I'm waiting to see endo, been put on carbimazole 5mg 30mg a day, saw a different gp today who told me its too much and to only take 10mg a day?!!!

I have severe dry eyes and blepheritis, optician I saw last week said he couldn't see any signs of thyroid affecting my eyes.

Does this sound like Graves? I know 80% of underlying causes are, I'm really hoping not but I seem to be cursed medically!

Any help would be appreciated!

22 Replies
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Mwms9,

Can you clarify whether TSO antibody 5.9 should be TSI or TPO? If it is 'fine' that usually means it is within range.

Is Carbimazole 5mg or 30mg a day?

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Hi, sorry my mistake it was the TPO test that was 5.9.

I take 5mg 6 times a day so 30 un total. I must say I've only had 10mg today and I feel better in myself, is this strange?

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Mwms9,

TPO is thyroid peroxidase antibodies and 5.9 is negative in UK. You will need thyroid stimulating immunoglobulin (TSI) or TSH receptor antibodies (TRab) tested to confirm or exclude Graves Disease. They're not usually tested in primary care so you'll have to ask your endocrinologist.

FT3 and FT4 are high so I'm not sure 10mg is sufficient. It would have been better if the new GP had reduced to 20mg in my opinion. Make sure you get a blood test in 4 weeks to check levels.

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Thanks, yes I asked the GP today about the other two blood tests and she said they aren't allowed to order them and the endocrinologist will have to. I'm having a blood test next week to check levels, I know I feel like 10mg is a bit low going from 30, I don't know if I should just take 15 or 20 and ignore the 10 she told me to take... what to do...!

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Also as I have asthma I wasn't allowed beta blockers but this other GP I saw today gave me an alternative: Adizem-sr diltiazem hydrochloride. Have you ever heard of that? The 1st GP said I would have to ride it out until carb took over?

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Mwms9,

1st GP may have prescribed 30mg to bring down thyroid levels quickly. I'm not familiar with beta blockers or alternatives.

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Thank you yes I think so too I'm just not sure which GP to listen to.

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Mwms9,

Split the difference and try 20mg?

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Yes I might try that dose and see what the bloods are like next week. Thank you

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30mg is quite a high dose for a GP to prescribe without reference to an endo, on the other hand, 10 mg seems a bit low given your thyroid levels. You should have your bloods tested every 4-6 weeks.

It usually takes up to four weeks for the effects of the carbimazole to become apparent, because it works on thyroid production rather than stored thyroid.

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Yes I think I'm going to go for 20mg a day, I'm having bloods done in a week and waiting for my first appointment with the endo. I wish there was a way to eliminate the stored thyroid!

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I was prescribed calcium channel blockers rather than beta blockers (mainly because I had high blood pressure), but they had a similar effect on breathlessness and tremor. The main thing for you to check is potential impact of the prescription on your asthma. Propranolol supposedly has a slight impact on thyroid levels, but as you're already on carbimazole anyway, this is less of an issue.

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Yes I have been trying to look online if anyone else uses the ones I've been given today and I can't find anything. I just wonder sometimes if GP's make mistakes and that these aren't ok for me to take!

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Did the GP say to take the tablets six times a day ? Most of us on anything over 20mg split the dose in two, roughly twelve hours apart.

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Hi, no she told me to take two 5mg three times a day, and the doctor I saw today said to just take 10mg in total!

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it might well be that an endo would prescribe 30mg. It's just a bit unusual for a GP to prescribe that much without being advised to do so by an specialist. Initial doses are often 30-40mg, because they want to bring your thyroid levels down to the normal range quickly, but it's important that you get regular blood tests.

Usually, you can expect to be on carbimazole for 12-18 months, including typically six months after your thyroid levels are back to normal. This is to give you the best chance of achieving remission. They may reduce your dose over this period, until it comes down to 5-2.5mg/day, or they may keep it high, but add a thyroid replacement (levothyroxine).

Did the GP talk to you about sore throats and mouth ulcers ?

It might be worth posting specifically asking about side effects. I had hives for the first few weeks, but they were controlled with anti-histamine, and eventually disappeared. I think some of the other side-effects tend only to last for the first few weeks, but as I didn't suffer them, don't know for sure.

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Yes she did, I did develop a sore throat 3 days after starting the tablets but they checked my white blood count and it was fine. The side effect I have had are itchy lower back. And also when I wake up in the morning my legs feel strange like there is pressure in them then after a few mins it goes, I mentioned this today but she couldn't explain it!

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the itchiness could be from the carbimazole, but I had this from the Graves' itself as well (so no escape !) you could try taking over-the -counter antihistamines, so long as there is no reason why you shouldn't do so (ask the pharmacist about inter-reaction with other meds, there is no issue with carbimazole).

I can't explain the sensation of pressure in your legs.

My endo told me that the sore throat to worry about would be like no other, and is often associated with mouth ulcers and fever. However, he also said not to hesitate to visit GP/A&E if I wasn't sure. He said that he's only seen half a dozen cases in thirty years as a specialist, so it's quite likely your GP will never have seen a case.

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I thought it might be, the more I think about it I think I've had this for a long time, I've always had itchy legs and muscle weakness in my arms and my scalp has been awful for the last 4 years and no shampoos work. I know I'm not sure about the leg thing either I hope it goes away.

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Yes it sounds like Graves 20mg carbimazole a day would be normal dose ...do not understand 5mg 30mg a day bit

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Sorry I meant i take the 5mg tablets, 2 x three times a day so 6 tablets in total = 30mg.

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As others have said 30mg a day is a high dose 20mg is more usual

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