How do you go about getting an alternative to T4 only

I have been on T4 only for over 6 years and getting progressively worse. I want to have the chance of trying an alternative (T3 on its own or in combi with T4, or NDT). If they dont work then at least I will have tried them and know there's no alternative for me. Is this just a luxury those who can afford to go private can try, or is it possible on the NHS? I have seen a specialist recently and asked him for a trial alternative but was basically ignored. I would appreciate your input, thank you.

8 Replies

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  • If you email louise.warvill@thyroiduk.org and ask for a copy of NHS Endos who may be willing to give you either some T3 to a reduced T4 or T3 alone.

    I personally think people are entitled to at least a trial of an alternative.

  • Thank you very much shaws!

    Jen x

  • Shaws, I have emailed louise as you suggested re: above but have had no reply - is she perhaps away?

    hooper

  • Yes, she and Lyn are away for 2 days to look at venues for our next Conference. She will reply a.s.a.p.

  • Thanks shaws!

  • Hi If you have had a blood test for TSH T4 and Free T3, and FT3 is low, TSH not very low then the GP should prescribe it, other wise you need a good endo. My endo says to try T4 and T3 ( you can suddenly stop converting the T4 to the amount of FT3 that your body needs)If that is not good, she likes armour etc, ( with T3 if very low FT3, like me) and last choice T3. I hope that helps.

    Best wishes,Jackie

    Not sure if you know, if you want to reply to some one, click on "reply to this" under their post.

  • That's very informative Jackie, thanks. Have had T4 test done and TSH but never had Free T3 test. I did ask my GP if I could have a Free T3 test to see if I have a conversion problem but he refused. It's very difficult to get anywhere with GP's I find. Thought of changing to another practice but could still end up in the same situation. Saw a specialist about a month ago and he was very kind but he was no where near considering any tests of any kind. I would go private if I had the money, but as a widow and pensioner on a very meagre pension that's not an option. Feel very discouraged.

    Jen x

  • Hi I have just lost a huge answer, so if you get 2 that was the better one.

    You need FT3 no matter what and TSH and T4 all 3 done frequently until stable. Some NHS Labs will no longer do them. Some GP`s will if you pay ,usually about £10. Especially if TSH high or high in range as you may well need T4 |and T3 on a script, common.Helps the symptoms especially weight. However if you saw an endo he should have done this and also B12 and Foliated, diabetes, iron/ferritin and vit D ( calcium if D low before treatment)If you did not have a copy of his letter to the GP, or/and the bloods + ranges ( all vary) then phone his secretary, routine usually.The other way, I know may be a problem for you but I now have to use Blue Horizon, quote TUK 10 and I pay £61 for the 3 tests, it is very easy all results e mailed to you to show any doc you wish to.www.thyroid.uk.org.uk/tuk.te. or more on their main site. They use a well known Lab same as all the private hospitals use but theirs are over £200.

    If you have T3 on a script, you are better starting on half the prescribed dose,for a week or so, normally 20mcg to start and always split T3 into 2 doses, 12 hours apart.

    I hope that helps,

    Best wishes,

    Jackie

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