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Possible B12 deficiency results?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Stillgoing, Apr 3, 2013.

  1. Stillgoing

    Stillgoing

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    Hi

    I have been suffering from CFS for 15 years. Lots of recent stress and lack of sleep gave me horrible peripheral neuropathy. Tingling, burning, crawling etc....

    This is the first time I have been analysing my own blood tests, rather than just listening to the doctor who has probably given up.

    The B12 test result was 300. In the range of 200-900 seems on the lower side of fine.
    I have a high MCV, which increased from 100 to 102.7 in 6 weeks, slightly high MCH of 33.6 and a normal MCHC which decreased from 34 to 32.7 in 6 weeks.

    I read that high MCV and normal MCHC can be indicative of pernicious anaemia/ b12 deficiency... What do you think?

    So I have started, 3 days ago (on top of Vit C/A/E/D, Sel, zinc, magnesium, omega3 and garlic)
    Alpha Lip Acid 2x250, Methycobalamin 4000 + 2000 cyno, and Methyfolate 400 mcg

    I am taking the high dose vit C and zinc well inbetween my doses of MethylB12 (as i read i should)

    Eating plenty of bananas and dried apricots to supplement potassium .

    No ill effects so far. Energy seems a bit better.

    a - I hope I have no irreversible damage.
    b- I hope I can really benefit from these supplements

    By the way.. I love you all... this site is amazing
    cph13 likes this.
  2. Crux

    Crux Senior Member

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    Hi Stillgoing;
    I say yes, an elevated MCV, and a low serum B12 does very strongly indicate deficiency. It's good you've begun supplements, because the neuropathy can worsen, resulting with permanent nerve damage. The B12 deficiency can be from pernicious anemia, or other causes. ( consider tests for antibodies to intrinsic factor and parietal cells.)

    The cyanocobalamin is considered to be the least effective, even troublesome, so you may want to switch to all methylcobalamin. Folks here are testing different brands, but Enzymatic Therapy is considered to be the best.

    I don't know how long you've had neuropathy, but from my experience, much of it can be reversed if it hasn't gone on too long.
    Marianarchy likes this.
  3. rlc

    rlc Senior Member

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    Hi Stillgoing, if your MCV test is in the same unit of measurement as this article you are showing signs of Macrocytosis see http://en.wikipedia.org/wiki/Macrocytosis

    Not sure on the unit of measure used on your B12 test, different countries use different units of measure, just to confuse everyone, but if it is in pg/ml then new research says that the lower limit should be 300, and people can still be sick with levels above this, Homocysteine and Methylmalonic acid should be checked to see if they are elevated to confirm diagnosis, this is all explained in this article http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    High MCV can be a sign of pernicious anemia, and many other disorders see http://en.diagnosispro.com/differential_diagnosis-for/reference-to-organ-system-mcv-mean-corpuscular-volume-lab-increased/10439-154-240.html

    So it is important to get your doctor to keep investigating to find the cause, if it isn’t B12, or folate deficiency.

    Hope this helps

    All the best
  4. Mij

    Mij Senior Member

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    Hi Stillgoing,

    I just received my b12 levels and they are at 217. Reference ranges for sufficiency is >220 pmol/L, insufficiency 148-220 pmol/L. So I am in the insufficiency range for the first time in 20 yrs. What is strange is that my MCH is finally in the normal range after 20yrs, it's usually high. I'm wondering if they really signify anything at this point or if it's symptom based? My doctor didn't even bother calling me so I'm starting B12 lozenges with Metafolin.

    I take most of all the supplement you take.

    I feel I have deficiency symptoms but who knows with ME.
  5. rlc

    rlc Senior Member

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    Hi Mij, has your doctor tested Homocysteine and/or methylmalonic acid, your b12 is borderline low, and some people can suffer symptoms even with levels higher than yours. If Homocysteine and methylmalonic acid are elevated it will help to confirm a B12 deficiency diagnosis.

    Changes like those to MCH do not have to be evident in the blood for low B12 to be causing problems, these changes to MCH can also be cancelled out if someone is also iron deficient, so it shouldn’t be relied on to make the diagnosis, Homocysteine and methylmalonic acid should be checked. Personally I would be wanting my B12 a lot higher then 217, at least around the 400 mark.

    All the best
  6. Stillgoing

    Stillgoing

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    Hi Mij,

    Like you and many, I am just going to treat myself as if I have B12 deficiency. It also ties in with the fact that I was almost vegan for a while, which is maybe a bit stupid in retrospect. I wont be able to get the Homocysteine and methylmalonic tests for a while.. if at all.

    Treatment on NHS is terrible. I was given almost no help for 15 years. ME might as well not exist to be honest. I was given gabentin for the paresthesias recently, which i refuse to take for now. My doctor seems to think there is no evidence that B12 helps anyone...

    'shit happens' is all I hear around me right now...outside this forum.

  7. Mij

    Mij Senior Member

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    Hi ric,

    Yes I agree with you. I used to have a great Integrative Functional doctor who would have treated me for this but sadly he retired recently, now I'm stuck with my regular GP who apparently does nothing. I had the methylmalonic test done 12yrs ago and it was in the higher end of normal range. At that time my regular serum b12 levels were a lot higher so I've become very deficient over time. I took hydroxy b12 shots many years ago. I also have below normal ferritin levels. My homocysteine levels are normal.

    thanks for your reply.
  8. Mij

    Mij Senior Member

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    Hi Stillgoing,

    I'm sorry you didn't get proper help for so long. I've had ME for 22yrs and was fortunate I had a great integrative functional doctor who would test and give me whatever treatment I asked for, now he is retired :( Unfortunately my GP thinks along the same line as yours, that b12 doesn't help. I'll treat myself also.

    I agree that being vegan may not be such a good idea. I hope you can feel better with your treatments. There is a lot of help on this forum.

    Mij
  9. Stillgoing

    Stillgoing

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    I have had my tingling in my hands and feet, sometimes more places for about 2 months

    I know this varies from person to person but how long could I expect to wait for a reduction in these symptoms.. if the B12 is working for me?
  10. Freddd

    Freddd Senior Member

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    Hi Mij,

    ME IS a combination of deficiencies. Many need all 4 of the deadlock quartet to make good healing progress along with all the basics and usually several additional critical cofactors. It's symptom based. MCV and MCH are not in lockstep.
  11. Mij

    Mij Senior Member

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    Thanks Freddd, I'll be working on that. I've been reading all your posts over the years. I took folinic acid many years ago with Metafolin, b complex, mb12 and TMG and actually had some success. I don't understand why I stopped. I never tried Adenosyl B12 though.

    Mij
  12. Mij

    Mij Senior Member

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    Freddd, for me it's not necessarily symptom based, I really have no clue anymore. My b12 dropped significantly since my last normal b12 test 3 years ago and in the last 3 yrs I've actually had more energy, improved immune system and better sleep. go figure. I guess the only recent change is that my brain is always going, I feel a sense of hyperness, like my foot is always on the gas pedal.
  13. Freddd

    Freddd Senior Member

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    Hi Mij,

    There is do direct linkage to serum level of B12. That does not reflect CSF/CN level. Also, the balance between these things is important. The most limiting factor is where the symptoms show up. Then the switch to the next most limiting factor. This shows up so well in hovering on the edge of methyltrap with paradoxical symptoms. So giving a little b12 for methyltrap changes the symptoms in a paradoxical way. They are much more complicated.
    Marianarchy likes this.
  14. Stillgoing

    Stillgoing

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    My doctor is a Class A idiot...

    I'm pretty sure there is a backlash from doctors against all the media around B12.. with idiots like Simon Cowell and other celebrities taking it. It is getting a bad name.

    My doctor is also under the impression that once I start getting injections I will just want more and more. What does that mean exactly? I think a high MCV, lowish B12 of 300 (despite taking b complex months before) and about 200 hundred symptoms which can be connected to B12 deficiency might actually warrant a few weeks of injections which cost about 6 pence each. I mean I have been ill for 15 years and have barely even seen a doctor in that time.

    Anyway.. he is testing me for Intrinsic Factor and full blood work again. Which is about a hundred times more expensive than B12 injections.

    Rant over... perhaps
  15. Crux

    Crux Senior Member

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    I don't understand it, my docs are somewhat dismissive of an elevated MCV, and from what I've read, it indicates advanced B12 deficiency.
  16. Stillgoing

    Stillgoing

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    Well I think that people who live for years with a chronic illness deserve thorough investigation, especially when there are indications on blood work.

    It is a horrible thing to feel like you are pushing your doctor for help. They also don't like it much.
  17. Crux

    Crux Senior Member

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    Insurance companies are a big part of the problem. I've read that it was sometime back in the '80s that they began to discourage regular screening for B12 deficiency. ( Dementia has been increasing exponentially since then.)

    About 10 years ago the normal range for MCV increased.

    Whenever I go to my docs, the first thing on their minds is how to convince the insurance co. that the tests are necessary.

    I sympathize with doctors in that respect, but, the other day, at my appointment, I began to feel like I was the therapist for my internist.
    cph13 likes this.
  18. Stillgoing

    Stillgoing

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    .....

    I have some new results.

    After starting Fredd's protocol my B12 serum is at 1045 and my Folate at 20. Tested negative for parietal cell and intrinsic factor antibodies.

    However my MCV has slightly increased to 103, and I still have a who bundle of paresthesias in my hands, feet and legs. As well as freezing hands and feet.

    Not sure about the rest of my results as I rang up for them. Seeing doctor on Friday

    I think I have more physical strength, and generally sleeping a bit better. So sticking with b12.

    No idea what is going on in my body...
    Crux likes this.
  19. Stillgoing

    Stillgoing

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    Im finding it quite difficult to ignore my doctor.

    He says my continued high MCV and MCH are just unexplained facts. now that they have tested me for hypothyroidism, diabetes, liver disease, pernicious anema.

    3 months ago the numbers were fine. 5 months ago I didnt have tingling/ parethesias anywhere.

    It is all so confusing.

    I think it is time for a 50mg dose of methyl b12...

    Well when I get my next order of Enzymatic.
  20. Crux

    Crux Senior Member

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    Hi Stillgoing;

    If you haven't had side effects from the B12, I think trying a higher dose might help. The serum numbers aren't very high for someone who is supplementing.

    The folate numbers look good,high enough, but still in range. ( Some people feel fine with high serum folate, but I had side effects.)

    The only substance that reduced my MCV, MCH, was B12.

    Hope it works for you, especially against the paresthesias. ( It still may take some time.)

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