Unable to raise b12 nt converting well

Hi, I posted a few days ago due to feeling grotty and wondering whether I was over medicating ( results in those posts) what I would really like to know if anybody has any ideas is whether I will ever be able to convert properly due to my low b12. As mentioned in my last posts I am unable to take either vitamin b12 injections or supplements or even fortified foods so have to rely on absorbing a small amount through my diet and have a really low b12 250 at the very highest and most of that is left over from the last injection I had, it was 85 before then. (140-250 insufficient). Could this mean that due to my deficiency that I will be unlikely to do well on levothyroxine alone? I would be really grateful for any thoughts on this please.

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17 Replies

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  • I'd say you're probably going to struggle to feel well while your B12 issues are unresolved.

    Do you like liver? If not liver, pate? Home made would probably be best but even shop bought would be a start. I think the original cure for pernicious anaemia was dried out pieces of liver (mmm, yummy!)

  • Hi, thanks for your reply. Yes am eating all that stuff until it comes out of my ears and I actually hate it but am eating it anyway, no room to eat stuff I do like! Have seen gastrologist and a neurologist plus pernicious anaemia society who cannot come up with other ideas on what to do about it. I'm obviously really worried about this but need to sort out my thyroid too as I'm feeling really rough. Any ideas?

  • KathyN,

    I'm not aware that low B12 affects conversion of T4 to T3 but you will feel unwell if you have symptoms of B12 deficiency and can't raise B12 level. Good levels of vitamin D aid T4 to T3 conversion.

  • Clutter thanks for your reply. I thought b12 was needed for conversion, that is some good news at least if it isn't. I don't appear to be converting well so assumed the b12 was the problem. I was low in d ferritin and foliage but these are now going up reasonably. It is really difficult to distinguish b12 symptoms and thyroid sometimes. I have gone from being a really fit person to someone who is really struggling on a daily basis in such a short time and I am really trying to find some help but it is so difficult. I am doing everything I can to educate and help myself so any advice is really appreciated.

  • I suppose what I am asking is given that short of a miracle I'm not going to be able to do much about my b12 is there anything at all I can do about my thyroid? I am actually getting pretty desperate.

  • KathyN,

    You are taking Levothyroxine so you are doing something about your thyroid. If you want to try T3 in addition to Levothyroxine you my find it difficult to get a prescription but you can buy it online and self medicate.

    You were also advised that 100% gluten-free diet may help reduce Hashimoto's flares and symptoms.

  • Yes I have been gluten free for about 6wks now but my antibodies continue to increase, should I have seen a difference yet do you think. Would you try the t3?

  • KathyN,

    Click on the green Reply tab and the person you are responding to will be sent email and on-site notifications you have replied.

    It can take up to a year to see antibodies decrease after going g-f and some people don't find improvement in symptoms or antibodies. If gluten was causing digestive issues I would expect you to be feeling some improvement after 6 weeks if you are 100% g-f.

    I benefitted from adding T3, so yes, I would. Send me a private message if you want sources where to buy T3. Click on my username and click on Messages to send a PM.

  • Thanks for the advice re the technicalities, you may have guessed I'm a bit of a technophobe! Yes my digestive issues may have improved a little so perhaps g-f is beginning to help, I am 100% g-f and am prepared to give it a really good go so I'll give it at least the year then. Thanks so much for all the advice. I will attempt to pm you re the t3, with any luck I'll get it right!! Thanks again!

  • Would you be able to tolerate a vegan B12 supplement?

  • Thanks for your reply, no unfortunately I'm not able to tolerate a vegan b12 supplement.

  • Hope you find something, fingers crossed for you.

  • are you a member of the PAS forum

    healthunlocked.com/pasoc

    you may also want to point your GP in the direction of the PAS website in relation to treating B12 deficiency - there is a section on the website and some advice for GPs who are trying to treat people who have problems with injections and supplements.

    pernicious-anaemia-society....

    they do have some information available on treating people with allergies that I occasionally stumble across but don't seem to be able to find at the moment. You may need to be a member to access this information

  • Thank you gambit for your kind reply. I belong to the pernicious anaemia society and have had several conversations with their chairman about this but have not found any answers. Of the two doctors who are listed under allergies to b12 on the website, one has retired and the other only specialises in allergies concerned with asthma now. My GP is very nice and has tried to find somebody to help with no luck. It seems ridiculous that there is not any help to be had, surely I'm not the only person in the world with this problem. Meanwhile the pins and needles and tingling in my legs gets worse day by day. I have gone from a pretty fit person to someone who really struggles on a daily basis now. I was diagnosed with an under active thyroid at the same time and it's really hard to work out which symptom is from which condition. I am obviously always grateful for any input on this. Thanks.

  • occassionally people do post about allergy problems on the PAS forum - though haven't seen one for a while.

    Think the usual treatment is one based on trying to de-sensitise - starting with really low doses and trying to build them up, but it does sound as if your best bet is going to be huge amounts of nigh-on raw liver. Can't say I envy you on that one. That was the treatment in the days before artificial B12 became available - may be what your GP needs to do is look back at the history of treatment for B12 and what was happening in the 1920s, though suspect that the preparations used at that time won't be commercially available anymore.

  • Yes I have looked in to the desensitising injections without any luck, Martin (pas) says that they seem out of favour now. I think you are right about 1920s stuff not being available now unfortunately. Trying the liver thing but makes me really sick. No idea what to do really. Thanks so much for your interest and obviously if you hear of anything else I would grateful if you could let me know.

  • Dr Natasha Campbell McBride suggests liquidising cooked liver - freezing it in small quantities and adding to soups and casseroles. Could be worth a try 😊

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