Help needed regarding gluten and lactose free thyroxine, please.

My G.P. Is no longer willing to prescribe the oral levothyroxine due to the cost, and I am really struggling to find a tablet that is gluten and lactose free. The Henning one from Germany is lactose free, but they can't say if it is cross contaminated with gluten. Would really appreciate any advise from others who avoid gluten. Am considering getting some form of self testing kit to check for traces of gluten in the tablets, but not sure how effective they are. Thanks

12 Replies

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  • What is he going to do about it then? Why should it be up to you? Has he approached the CCG?

  • I had the same problem with my doctor but eventually if got a script for 'Martindale' - Louise at 'thyroid UK' has details. Your local community chemist can setup an account with Martindales. My daughter had so many problems taking the mercury pharma tablets due to the fillers.

    good luck

  • Hi there. Can you tell me if you have to pay for the Martindale medication?

  • Thanks for the responses. I will need to pay for the medicine myself, do you know is getting it through martindales is really expensive, and how do I go about it? My GP is very supportive, but the Partners in the practice and primary care trust have refused to allow her to prescribe the oral solution. I am not diagnosed gluten or lactose intolerant, but have celiac in the family and other auto immune diseases, so cut out gluten when I was diagnosed with auto immune thyroid problem. Thanks again for the help.

  • Could you ask for coeliac/gluten/lactose testing? What does she think of you possibly self-medicating?

    Her blaming others really is a cop-out. I really despair with the NHS.

  • Why should you have to pay? If you are "exempt" then surely the practice would be reimbursed by the NHS? I am in the same situation and have just started investigating lactose free options. It would appear Martindales do lactose free levo capsules.

  • I am not sure what self medicating means, (am new to this forum!). Am thinking about lactose test, but if negative then GP may be even less inclined to help, even though I want to avoid dairy anyway.

  • All UK prescription medicines are officially gluten-free.

    Do you feel that you have to conform to the level of gluten-free required by coeliac sufferers? Or simply keeping it as low as practicable? It would be interesting to know if the factories that manufacture their levothyroxine products do actually process any gluten-containing products at all. Maybe it is just that they cannot

    Maybe worth asking Aliud?

    thyroiduk.org.uk/tuk/treatm...

    I suspect that there is no DIY kit that could detect gluten at the extraordinarily low levels required for certified gluten-free status. Would be interested if someone says otherwise.

    Rod

  • Thank you for the help, I aim to be totally gluten free, as it seems that any exposure to gluten leads to anti body response for 6 months (from what I can gather). There are serious auto immune problems in my family and I want to avoid them. That is why needing to take thyroxine is such a problem. I don't eat anything unless I am sure it us gluten free, even bringing my own coffee to work as the communal one may be contaminated ( people make sandwiches near it). Mercury pharma have told me that their thyroxine is suitable, but as it contains lactose I need to find an alternative. I am taking that at the moment until I can sort out what to swap to. It is a real nightmare at the moment and I can't see a solution.

  • Hi MidnightBlue,

    I have just found your post (even though it's a year old!) and have the same problem.

    Do you have a letter or email from the Hennings manufacturer saying that they cannot guarantee that their Levo is not cross contaminated with gluten?

    If I can prove this, my doctor would be willing to prescribe liquid Levo.

    Would really appreciate a reply if you have time.

    Shilling11

  • Hi, no sorry, I just emailed them to ask. I will see if I can find the email and quote their reply for you. Would your G.P. accept an email as proof? If so you could email them.

    It is still a problem for me, I am really upset about it. I feel really angry that I have to limit my diet so much, and yet am forced to eat lactose by my G.P. Really glad to hear your G.P. Will prescribe for you.

  • Hi, thank you for your reply. I have emailed them and waiting for an answer regarding the gluten. I currently take Henning Levo tablets which are lactose free. My GP is happy to prescribe them as they around the same price as all the other Levo tablets. Maybe your GP would do the same for you.

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