Need some help

Can someone tell me why I am feeling so unwell? I was initially low on b12 250 range 196-996. Doc would not give injections so ended up supplementing methl 5000mcg. Felt brilliant for few mths. Slowly started feeling unwell again. Tiredness, tinnitus, tinglin and now numb patches on feet and hands. I upped potassium and felt better after eating 2 bananas a day. My ferretin is 40 so taking iron for that. In the last few days ive been having chest pain and rapid heart rate. Doc says its anxiety blah blah blah lol. Had intrinsic factor test and it was negative. My b12 is at 2000. I also take folate and this is currently at 13, think the cut off is 18. Vitamin d is 58. Are these symptoms possibly an electrolyte imbalance ie potassium or sodium. I do get frequent urination frequently.im at a loss because b12 is so high doc doesnt see ot ad a prob. The numbness is really getting me down. Sometimes my tongue feels numb aswel. Oh I also take a vit b complex for balance. Any thoughts? Thanks

10 Replies

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  • Sorry ferretin is 40

  • When B12 levels get high some people have an autoimmune response which means that their body produces antibodies to the mechanism that transports B12 to the cell level - functional B12 deficiency - it is possible that this may be what you are experiencing.

    This article discusses the phenomenon and some of the causes of high cobalamin levels.

    qjmed.oxfordjournals.org/co...

    UNfortunately it doesn't really talk about what to do if you have a B12 absorption problem but also have functional B12 deficiency ... not really aware of any articles that do but may be someone else out there does.

    However, it is also true that there is a huge overlap between the symptoms of B12D and other conditions and there could possibly be something else going on, though I guess your GP is/has run test to rule most of that out.

  • Gambit thanks for replying. Sorry can't open link. I will look up functional B12 and have a read. Do you think if I cut back on the b12 would it help any? Yes gp has checked everything no diabetes. Thanks

  • Other possibilities also include thyroid - another condition where it can be quite difficult to get the right treatment.

    The thing with B12 is that you do have room to experiment - that means yes you can try cutting back on the B12 to see if that helps - though personally I think that if you do have the auto-immune response then the only thing you can really do is flood your system with B12 so the body body is generating more active B12 than it can generate antibodies so some of it does get through.

    As Snakely suggests below you can also try switching to a different form of B12 and see if that makes a difference, or you could also look at different delivery methods and see if one of those works better for you - eg nasal spray, skin patch

    Apologies but this isn't a condition where there are hard and fast rules about one form of B12 being better than another - it really does vary from person to person and all you can really do is experiment until you hit on the thing that works for you. It may even be that a mixture is what works best for you. I use a mix of methyl and hydroxo because they help me with different problems and find that nasal spray works well for me.

    IFA coming back negative doesn't necessarily mean that you don't have PA because the test is only about 50% accurate.

    I presume that your GP isn't aware that anxiety is actually a symptom of B12D, but never mind.

    what sort of chest pains are you getting - could that be acid reflux? Before I started treating myself I would get really awful pains in the chest - generally associated with eating ... and on a number of occasions the only way I could get rid of it was to throw up. can very occasionally get it but it has improved with getting my B12 levels right for me. sometimes the pain would have me bent over double.

  • I do have hashimotos forgot to say. Tsh hsd been fluctuating this last 6mths. At ibe stage it was 2.75 but is now at 1.75 as of 2wks ago. Although I know this could be causing problems the numbness and tingling is new to mei have tried asking for an increase as I feel better tsh at around 1 my doc will not budge as in range. Whats new there lol.

    Chest pain feels like a heaviness usually accompanied by high heart rate. I am going to try the hydroxo. Do you get on amazon? Dnt really know whether to increase or decrease. My level atm is 2000. I am also perimenopausal. Vitamin d is 58. So annoying when you have more than 1 deficiency.

  • I get my B12 (as a nasal spray) from detox people - not sure if they do other formats (sublinguals) in hydroxo.

    Can't help on the thyroid front at all - I'm one of the lucky ones for whom B12 seems to be my only issue.

    The chest pain as you describe doesn't really sound like acid reflux ... though B12 can affect pain levels and if you are made anxious by the pains then that is going to tend to put your heart rate up.

    Hope you find a solution soon.

  • Sorry to hear you are feeling so unwell. Have you been tested for diabetes? Just wondering, as some of the symptoms you mention can also be caused by this. Just a thought

  • Yes no diabetes.

  • Sounds a lot like what I've been going through. Maybe try switching to a different form of B12 (i.e. hydroxo- or cyano-) and see if that helps. It's helped me some.

  • Thank you snakely I will try these. Will do anything to feel better.

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