Could I be deficient?

Hi everyone

I have come across to you from Thyroid UK. I have Hashimotos and am struggling to get well as I still have lots of symptoms despite my thyroid levels being optimal on Levo. I recently saw an Endo who is going to start me on a T4/T3 combination but also suggested there may be something else going on. He is testing me for early menopause and giving me a 9am cortisol test. He is also testing B12.

My grandmother had pernicious anaemia and I started to read up on it and realise I could too. My most recent serum B12 level was 242 but this was after supplementing with 1200ug daily (sublingual) for 8 weeks as this was recommended on the Thyroid forum. As my Endo is testing again in 6 weeks time I thought I should perhaps stop supplementing as I could be messing up the results. 1 week after stopping the B12 I feel dreadful. Is this psychological?! I have constant brain fog, muscle aches, dizziness and blurred vision anyway but this has all worsened. Today I couldn't remember how to get to my daughter's school which is 5 minutes away. I forget what I am saying halfway through a sentence. Could this be B12 deficiency? Should I go back to supplementing or carry on without for the sake of the blood test?

Sorry to have waffled on. I feel so stupid and can't explain anything anymore!

Thank you x

13 Replies

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  • Should have also said that the pins and needles in my hands and feet are awful.

  • The range of symptoms you mention are certainly familiar to those of us who suffer from B12 deficiency.

    Getting a diagnosis can be really difficult as the serum B12 test is difficult to interpret though GPs and other specialists generally aren't aware of all the caveats.

    Would be best to avoid supplementation until you have had the test to reduce the risk of supplementation skewing the results and make sure that you do get a diagnosis.

    The pins and needles are the symptom to push on as these are evidence of neurological damage.

    Hope that you are also getting folate checked - though guess that may also be done

    Following may be useful

    bcshguidelines.com/document...

    Summary and need respond to neurological symptoms which are frequently present without anaemia and when B12 is in the normal range

    cks.nice.org.uk/anaemia-b12...

    interpretation of results

    ukneqas-haematinics.org.uk/...

    on importance of looking at clinical presentation rather than test results.

    It's also important to bear in mind that there is a huge overlap in symptoms of B12D and other conditions and it isn't uncommon for more than one thing to be going on at the same time.

    Test that can help to clarify if B12 is in the grey zone are MMA and homocysteine - some waste products that build up if your body doesn't have enough B12.

    There is also an active B12 test but that isn't generally available on the NHS

  • Thank you so much for all of that info. I will print out and take to my next appointment. Already been a battle to get help with my Hashi's so looks like I will have to keep going with the B12 now too! It's such a struggle when you don't feel well anyway so I really appreciate the info as its so good to be able to take something with you to back up what you are saying!

    Thanks again :-)

  • Hi, have you watched Dr Chandy on You Tube re B12? He opened my eyes! Have a look and see what you think.

  • Wow! I wish he was my GP! So interesting. Thank you!

  • Is there a link???

  • does that work? if not just go to you tube and search for Dr Chandy

  • Hi Kel8. You have neurological symptoms of B12deficiency and, with PA in your family, you should be treated without delay. Autoimmune thyroid disease and B12 symptoms do overlap but I would be concerned about the pins and needles.

    Here is a recent post, with a successful outcome, which might help you too :

    healthunlocked.com/pasoc/po...

    Good luck.

  • PS.

    This is another good link, which gives lots of info in a video and advice on writing to your doctor:

    b12deficiency.info/sign...

  • Thank you so much for all of that info too! I am going to take as much as I can with me to my next appointment. I just can't go on feeling like this so I am willing to fight for treatment. Thanks again.

  • Hi Kel8, there seems to be a definite link between thyroid and B12 deficiency. If you can stop the supplementation it will mean the test result is more accurate. It sounds as though you really need to be on injections as soon as possible. I wish you well and hope you soon feel better. MariLiz ps I have both conditions plus fibromyalgia, it's a struggle to get all the help you need!

  • Thank you. I will stop supplementing as it will be worth it in the long run if it means I get help. I feel for you with an extra condition on top! I hope you are getting the treatment you need to feel well. Thanks again.

  • It's a fight all the time, but I supplement the B12 myself towards the end of the three months. I can't get my GP to agree to more frequent injections, and believe me I've tried! Hope it all goes well for you. Best wishes MariLiz

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