What To Do If Your #B12 Looks OK on Blood Tests But You Know It Isn’t…


Remember the post I wrote quite recently about the importance of B12 and how blood tests can really be misleading:

B12 Deficiency: Fatigue, Muscle Pain, Brain Fog, Neuropathy

Well, I have now finished my research on that so here’s an update for you…

How to confirm B12 and folate deficiency when your blood tests look ok…

First: the testing. Remember I kept finding high serum B12 on blood tests yet the person was showing clear B12 deficiency signs? Well, this is termed a functional B12 deficiency where actually the B12 is not being utilised properly, as we thought. You can do an MMA (Methylmalonic Acid) urine test if you suspect a deficiency even though your blood tests look OK and I have done several recently for people. Most had elevated MMA which is confirmation of a B12 deficiency rather than an excess.  Here’s what the lab says:

The most common cause of methylmalonic aciduria is cobalamin (vitamin B12) insufficiency, since the nutrient is needed for its metabolism. Expected symptoms of B12 dependent methylmalonic aciduria may be those of B12 deficiency, including fatigue, ataxia, sensory losses, paresthesias and other neurological problems. Anemia may or may not be present.

Vitamin B12 administration is the most appropriate therapy when MMA  is high.

The treatment is therefore taking a measured dose of B12 and re-testing to check the levels of MMA are reducing. I have now worked out a protocol to follow.

Whilst I was at it, I looked at functional folate deficiency too. Again, many people show high folic acid on blood tests yet show signs of folate deficiency. This you can test by measuring FIGLU (Formiminoglutamic acid).

Both tests can be done separately but it is easier and cheaper to do it as part of the Metabolic Analysis urine test, which measures both and a lot more besides.

A Methylcobalamin B12 liquid

In the previous post, you may recall we were talking about the importance of the type of B12 you take. The best is methylcobalamin rather than cyanocobalamin because cyanocobalamin has to be converted to the active methyl form in the body anyway. I asked Dr O several times for confirmation of the source of the probable grain-derived ingredients in his product but have drawn a big fat blank, which is more than a little disappointing.

I gave you a TGF safe cyanocobalamin to use. But, I didn’t give up the fight on the liquid one I mentioned too. At last, after two months of emailing reminders, here’s a methylcobalamin liquid which I am 99% sure of being TGF safe. The manufacturer couldn’t confirm the nature of the flavourings, please note, but we assume they are chemically-synthesised and that doesn’t involve any grain. The liquid might be easier to absorb for many of you.

So, lots of stuff for you on the all-important B12 that many of us are deficient in – even if our tests make them look like they are OK.

Just call me Sherlock…

11 Replies to “What To Do If Your #B12 Looks OK on Blood Tests But You Know It Isn’t…”

  1. Thanks Micki – not quite sure I agree with you on all points, as a result, I wonder if you could remove our logo from your article?
    1) MMA test is not specific to B12 deficiency (Sally Pacholok’s 2nd edition removes this recommendation at our suggestion). The best way to diagnose is by signs and symptoms, using a recommended protocol for diagnosis and subsequent treatment http://www.b12d.org/content/b12-deficiency-protocol-treatment
    2) agree that cyanocobalamin is not useful, though the reasons are more involved
    a) those that can’t break the cyanide-cobalamin bond to form methylcobalamin can’t use it (quite a large % of the population)
    b) those that can, we’ve observed mild headaches which are almost certainly due to low levels of cyanide (no we can’t prove it)
    3) methylcobalamin is most valuable in injectable form, though of course you need that on prescription. For the 1 in 1000 (well, 3 in about 3500) who find the methylcobalamin isn’t working anymore, then combine it with adenosylcobalamin (oral tablets such as dibencozide) which has worked in all 3 cases so far.
    Methylcobalamin in oral form – rather than going to the trouble of finding a liquid with no gluten products, there’s a sublingual tablet with steria (sweetener) and a minimum of clay binding from No Shot (buy from Amazon). Typically combined with folic acid and B6, this has been proven (peer reviewed medical journal – Smith, Smith and a few more Smiths and Refsum Oct 2010) to stop dementia and brain shrinkage so if it works for that, it probably works for most B12 deficiency

    1. Hi Hugo,

      Thanks for taking the time to comment. I wasn’t aware that was a logo, apologies, I shall indeed remove it.

      Very useful linking to the diagnostic stuff, thanks. I am a bit confused as to what you are recommending for people where we find very high serum B12 levels with obvious deficiency signs, which is what this post was all about?

      Interesting comment re MMA. Can you explain a bit more why MMA is not useful, please so we can learn? I realise that MMA is not just useful for that but was told by several people it was a good double-checker for functional B12 deficiency. I was unhappy to give high B12 supplementation to someone with high serum levels on symptoms alone and prefer to have some biochemical proof if at all possible.

      Thanks for the recommendations given too. Re the No Shot, this would be no good for my allergy patients on here as it contains lactose and a ‘natural flavour’ which could well be made with grain alcohol. Also, many B vits are the product of fermentation and you have to look at what the substrate used is, often corn. The one I have recommended is TGF safe.

      Thank you for helping us learn, I appreciate it!

  2. Another comment! Two in one day! Gluten intolerance is caused by the same thing that causes autoimmune conditions, ie the cell membrane is improperly formed so the proteins on the cell membrane aren’t necessarily positioned correctly so they don’t function properly (signal proteins, identifier proteins, binding proteins). This also applies to endocrine function, which in many people results in infertility and menorrhagia. Sorry, now let’s look at a possible cure.
    B12 is required for proper development of cell membranes. Everyone is different, so everyone has different tolerances to low B12 (for example, many coloured races have had generations or thousands of years with low access to meat and have much more efficient B12 scavenging processes and tolerance to low B12, whereas many caucasians (whites) have had meat as a main component of the diet consequently have had no genetic selection pressures to be good at this.
    Anyhow, what I’m getting to is that high doses of B12 may restore your normal gut function, reducing your food intolerances

    1. Interesting. Have you a reference for the cell membrane/autoimmunity link and for the B12/cell membrane link please so I can read more? Fingers are crossed it can help.

  3. What should one do if after having neurological symptoms you started supplementing B12 before even waiting for B12 levels? In this case it was diagnosed as MS (due to demyelinating lesions and positive ogliconal bands on spinal tap), but B12 is often a contributing factor.

    Started supplementing with cyancobalamine for almost a year, then changed to methylcobalamine. My levels have always been on the high end of the range, but my homocysteine has never dropeed below 13.8 (and was at 16 when i had my first relapse). So, I think I may have a problem with B12, but suspect that now that Im supplementing no blood test will confirm.

    And lastly, i am heterezygous for C677T MTHFR..which doesnt help with all of this, at all.

    Any recomendations?

    1. You could possibly do an MMA test on your current supplement level and see how you are on it or you can stop for a while and do one off your supplement and see what the result is. This is a complex field and not one of my specialties so do seek out other advice too.

  4. Thanks. Problem is that neither public health service or my private insurance will order me the MMA test given my normal B12 values and normal (although highish) homocysteine values.

    Can I ask how long one should stop taking B12 in order to see real normal levels mainteained by the body? How long does it take for the body to use it up or flush it out?

  5. zjac020 You could register email with Healthunlocked and join the PAS health section (v knowleagable support re B12, lots of Q & A, You are able to ask any questions and get informed responses. It is usually stated by members, 6months without supplementation before test. Testing is a snapshot in time of your status. The only reason you would put yourself at risk for B12 dropping further (as you feel you are deficient) is to prove to the NHS that when not supplementing your B12 is below normal range and they should therefore treat you with injections. Have you thought of contacting the B12 charity? They provide B12 info and injections (needles and B12 to self inject) with donations kindly accepted if can afford to enable those access who can’t afford http://www.b12d.org/

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