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Thyroid UK
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Graves

My wife Has Graves' disease, since 2013. Has been off medication since March. With normal TSH results. Just found out T4 is 64. Endo was reluctant to remove Thyroid and now it has flared up again. Any thoughts?

Back on carbimazole of 20mg tried getting referred to professor Colin Dayan but GP was dead against it.

Any suggestions would be appreciated

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Kris224,

Permanent remission in Graves patients is less than 50% successful. If your wife is comfortable taking Carbimazole she can take it for decades. If she doesn't do well on Carbimazole thyroidectomy is a better option than radioactive iodine ablatement which can make thyroid eye disease (TED) worse.

Is your GP against your wife taking Carbimazole or seeing Prof. Dayan?

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The GP was dead against referring her to the Prof Dyan. Sorry to jump in but Kris 24 is my neighbour and friend.

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Hymermad,

Ah, I see. In England a patient can ask to be referred to the consultant they prefer.

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We are in England but on the border of wales. How can One insist on requesting to see the endo of choice? Is there anything in particular they can do? I.e. Emailing and or writing a letter requesting to see Prof Dayan. Kris's wife has been so ill for the past few years, she has TED as well and had operations on both eyes to stop them popping out.

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Hymermad,

I'm not sure that Kris's wife will be able to insist on referral to Prof.D who is in Cardiff as she is in England.

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3 yrs ago I persuaded the same GP practise to give me a referral to Prof Dayan. I hoped by being insistant they would give in! And they did eventually! So persistence may work for them too eventually!

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Many thanks Clutter

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does the eye surgery leave scars. i am on a weekly steroid infusion for TED and my conslutant is talking about Radiotherapy. Any advice

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Thank you for all replies, yes the surgery does leave scars. I had corrective surgery in August and I am quite happy with the results, I was on on steroid infusions retuximab and had radio therapy also.

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