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Confused about measuring B12 levels.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by SueinOz, Aug 18, 2014.

  1. SueinOz


    Hi there,
    Can anyone explain why a normal blood test for B12 is not really telling us what is going on? My naturopath says it's like measuring what's in the cupboard but that's no good if you can't open the cupboard door... But I'd like a more technical answer so I can figure out what to do.

    I am MTHFR C677T+/+ and so have folate and B12 need. Other genes have been tested too and I know what each one may express.
    My blood test was "normal" last October, now after taking daily: 2mg of adenosylcobalmin and some liposomal B12, for some months my doctor has hit the roof - I had a blood test because I had chest pains - my B12 is 1034 pmol/L (Range is 180 - 740). Naturally she wants me to stop taking B12 but my naturopath says I need it.
    I can't take any folate as folic acid doesn't convert and Methyl donors overload me and I feel like I have flu. Hence no methyl B12 either.
    My folate blood test was 2594 (Range: greater than 630).
    My memory is better but I haven't noticed any change in other symptoms on B12.
    I'm also on Mg, ATP Fuel, C, Silymarin, and various amino acids with B6 and Zn mixed in, as I measured zero for all aminos on a Urinary amino acid test.
    My active B12 was ok.

    What to do?

    Last edited: Aug 18, 2014
  2. PeterPositive

    PeterPositive Senior Member

    In a nutshell the B12 serum level is not very indicative because there are many other variables at play.
    B12 is a very complex vitamin that requires proper absorption, activation, recycling and transport to do its work. If one has issues in any of these phases its efficacy will be diminished.

    Also B12 works with other vitamins in the methylation cycle to produce glutathione and SAMe. You may have very high B12 levels and still not be able to use it due to a partial methylation block.

    I think most people posting in this section of the forum have very elevated serum B12 because they supplement it on a daily basis and yet their methylation cycle is still not running optimally. One of the upsides of B12 is that it's essentially non toxic and it doesn't have documented bad side effects.

    Some doctors prescribe a Methyl-Malonic-Acid test (MMA) as a better parameter for B12 status. It's not a definitive answer though and it mainly checks your status of the Adenosyl-B12 which is half of the picture. (Methyl-B12 is the other half).

    I have the same mutation and similarly had a hard time with high dosage of methyl-folate and B12. The low-and-slow motto is usually successful in these cases. You just take what you can tolerate and with time you try to increase without any pressure. It has taken me 2+ years to raise my B12 intake from 0.8mg to 7-8mg, and with higher dosages I got significant improvements.

    Last edited: Aug 18, 2014
  3. PeterPositive

    PeterPositive Senior Member

  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I have the same double mutation as you and what my specialist told me is to not expect quick improvement as after all our bodies have had these issues all their lives. Like you, I thought it had only worked on my memory but with a lot more time on it (over a year) I found it was helping me in other ways too.

    You are also decreasing your risk of certain things by dealing with this mutation and treating eg possibly lowering the likihood of strokes as this mutation due to what it does to homocysteine raising it if not treating the mutation etc

    With B tests, if Im remembering right they only show extracellular levels and not how much is getting within the cells (so only show up that other kind of deficiency).
  5. Freddd

    Freddd Senior Member

    Salt Lake City
    Hi SueinOz,

    When a person starts active B12s (MeCbl;, AdoCbl) and folate (l-methylfolate) the things that usually happen is that methylation starts and so does cell formation. Along with that are usually 2 induced deficiencies, potassium and donut hole paradoxical folate deficiency. Below you can see the "flu like symptoms". These induced deficiencies are flags of healing. They are exactly what somebody who wants to heal looks for, and then corrects by titrating potassium until the low potassium symptoms are gone, usually somewhere between 1200-3000mg daily in 3 or 4 or more divided doses. Also titrating the folate upwards, Low potassium not corrected can be dangerous or deadly. Low folate increases many familiar symptoms.

    The idea of stopping b12 because some test that enforces chronic deficiency says "too high" is ludicrous. An asymptomatic level might be as high as 100,000pg/ml for some people. The testing was developed to reflect CyCbl/HyCbl lack of effectiveness which is a poor imitation of B12.

    Version 1.2 12/08/2013

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

    There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

    IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

    Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

    Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

    Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.

    Group 2a - Both

    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation

    Group 2b – Either or both

    Headache, Increased malaise, Fatigue

    Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

    These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

    Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.

    Old symptoms returning


    Angular Cheilitis, Canker sores,

    Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

    Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

    Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,

    Longer term, very serious

    Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily

    Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.

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