burning mouth any ideas?

I have now been hypo for 3 years and when finally diagnosed (long story full of errors) had a TSH of 60 and no T4! and felt like I was dying.

My question is since being on thyroxine I get a burning mouth the tongue which is quite unpleasant it can last for days at a time and then goes away for a while but always comes back. I've done all the usual stuff with regard to what I eat but nothing is conclusive. Also my thyroxine was cut back to 75mcg (10 weeks ago) I was just out of TSH range and I'm now starting to feel unwell. I have another blood test arranged next week. Surely 75mcg is very low for someone with no thyroid function ( I weight 11stone) so I just don't understand what is going on.

Does anyone have any ideas?

Many Thanks

Sheila

6 Replies

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  • Sheila, I really hope that you can convince your doc to increase your thyroxine again.

    Burning mouth symptoms can be attributable to vitamin B12 deficiency. I am not a medical expert by the way!

    Have you ever had your B12 tested? I am afraid that the range is around 190 to 900 and injections are prescribed if your result is below this range. However, say in Japan their range starts from 500 I read somewhere.

    I didn't have burning mouth but had some other symptoms that have disappeared since supplementing with a SUBLINGUAL B12, my levels went from 239 to 700+

  • Thanks for this feedback I did have my B12 tested sometime ago and was told it was OK so when I have my next blood test (Tues) I will ask the nurse to look up the results to see how they are within the range.

  • Burning mouth can be caused through insufficient saliva, which is a common symptom of hypo. Have you mentioned it to your GP?

    There's an article on the Guardian website that may be of interest:

    guardian.co.uk/lifeandstyle...

    75mcg is quite a low dose. Did you feel well on the higher dose? How do you know that you have no thyroid function left?

    When did you get your blood drawn in relation to taking your thyroxine? Ideally, get blood taken as early as possible in the day and don't take your thyroxine until afterwards.

    If your next test shows TSH back in range, consider discussing an increase to 88mcg with your GP.

  • Thank you for your response. I have always assumed I have no thyroid function left because of my test results when first diagnosed (showing no T4 and a TSH of 60) I would feel a lot better if this wasn't the case and at least there was some function left.

    I felt fine on the higher dose and have been on 100mcg in the past with no hyper symptoms. In fact the reason I went back to my GP was that I thought I needed more so was very surprised to be told to cut back first to 88mcg and now 75mcg.

    Anyway blood test tomorrow so I will see what that brings.

  • Hi Sheila2

    Have a look at the information on the following websites. It may help you.

    Glossodynia: Burning Mouth Syndrome

    dentistry.com/conditions/mo...

    Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency

    www2.cochrane.org/reviews/e...

    I have had this in the past & I believe that stress, candida as well as B12 deficiency can be the problem. I take Intrinsi B12 foliate daily (don't forget 25% off if you are a member of ThyroidUK).

    Take care

    Sentinel

  • Thank you for your feedback and I will check out the websites.

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