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Thyroid UK
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I would like titration, not block and replace

Hi there, advice please. 15th June my t4 was 48.1 pmol/ L 12.0. - 22.0

TSH. <0.01. L my/L 0.27. - 4.2

Today my t4 is 22.2 range the same 12.0. - 22.0

I am told to keep taking 40 CMZ a day as usual as my TSH is too low and we are concentration on that. Please could you tell me if they are guiding me to block and replace with this instruction. I would prefer titration as killing my thyroid off to replace with an artificial thyroid hormone does not seem right. Or am I completely wrong in my assumption. I have multi nodular thyroid. Many thanks to all. Val

12 Replies
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Vbgr,

You are on titration. Carbimazole is an anti-thyroid drug to stop or slow thyroid hormone production. It doesn't damage your thyroid gland. Most people can expect to be weaned off Carbimazole after 12-18 months but remission is unlikely to be permanent in patients with positive Graves antibodies.

It can months for TSH to recover so your endo may have to reduce Carbimazole from 40mg if FT4 drops low in range or add some Levothyroxine to replace the T4. Block and replace is Carbimazole to completely block thyroid hormone production with Levothyroxine to replace the hormone.

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Thank you so much Clutter, I was about to disagree with my doctor, and lower my dose of CMZ, not a good idea. Just saved by your bell. How would I know if I had positive graves antibodies please? Val

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Vbgr,

You need Thyroid Stimulating Immunoglobulin (TSI) or Thyroid Receptor Antibodies (TRab) tested to determine whether or not you have Graves. Your GP is unlikely to be able to order it but your endo can.

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Thank you, I will try both - doc this Thursday and then Endo 21 September. Val

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Hold on! Yes confront your doctor and yes demand a reduction in CMZ!! 40mg is a huge dose n you are now in range so it needs to be reduced with a quickness!! THAT is titration. You also need an antibodies test as clutter mentioned and if you have graves then tell your doctor to forget about raising tsh and focus on keeping ft4 at the top of the range. So many doctors focus on tsh but if you have graves you will have to go hypo to get that tsh up n meanwhile your antibodies will increase wildly. Go to Elaine Moore's website and read her article on tsh. Also she has tons of useful info. And get that CMZ dose down but not on your own, demand the doctor tell you how to reduce safely!

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Hi Cat, seen the doc. No way can I reduce my CMZ. He doesn't know if I have Graves, he doesn't think so. . Will test for it when I have my next bloods done in six weeks. He says TSH is most important and mine is too low. He says he wants my Ft4 down from 22 to 17 in six weeks. That is what he expects. If I don't keep up the 40 CMZ he will not be responsible for me. Feel a bit frightened and depressed. Val

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Oh my goodness, I'm so sorry. That sounds like a lot of intimidation. I've also had doctors reject me because I wouldn't do what they say, which seems needlessly aggressive. Did they say why they won't test for graves yet, or why they don't think it is graves? Well the good part is, if they are right that it's not graves then d tsh should come up and it may be temporary. If it is graves n they find antibodies at your next test then it is unlikely that the 6 weeks shouldn't cause serious damage but then you can insist on reducing your dose to the amount that keeps you at the top of the t4 range. I know it feels horrible to be intimidated and threatened by someone who is supposed to care. But you will be okay and 17 is still not awful!

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Hi Cat, thanks for that. He said he is not allowed another test for six weeks. about Graves, it may be that the Endos conculsions didn't think I had it. I am not allowed that report as they think it may worry me. I find that condescending. But will get over it. Any way, thanks for your kind words, Val

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Stay strong Val and if you a patient in the uk NHS then you have a right to your report!

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I must admit that is what I thought, but having asked the endo and got a letter to say there was nothing suspicious and the doc said that Endo doesn't want you to worry, so no. Things aren't as clear. Doc did say it's multi nodular on the right side and one nodule on the left. Will take it as it comes. Thanks Val

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Well keep us updated and you're welcome to dm me if you need a rant! Best wishes, Cat

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Many, many thanks Cat4. I asked the doc on the phone if I can reduce and he said no, I will find out if I have Graves and then will ask for help with safely reducing. If I don't have Graves do I keep on with the 40mg CMZ?. Val

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