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high MCH with normal B12 and folate

Discussion in 'Mast Cell Disorders/Mastocytosis' started by TurtleLove, Jun 17, 2018.

  1. TurtleLove

    TurtleLove

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    Hi,
    It looks like there is quite a bit on the forum about MCH already. My levels are high but my B12 and Folate are normal, so I assume those supplements won't help. Does anyone know much about this? Thank you.
     
  2. Moof

    Moof Senior Member

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    Testing B12 status accurately is challenging, and certainly not the exact science most GPs assume it to be. Serum concentration is particularly useless in showing how well your body is able to utilise B12. I had deficiency symptoms for several years, despite two decades of oral supplementation and serum levels of 800 or more.

    My doctor refused to treat me for deficiency, so when I got to the stage of showing significant symptoms of premature dementia, I decided to learn to self-inject hydroxocobalamin. This may well have saved me from the same fate of women in earlier generations of my family, who developed dementia due to having a predisposition to h. pylori infection, which then damaged their ability to absorb B12 in the GI system. I take methylfolate to support the injections, as cobalamin needs adequate folate levels to work properly.

    My memory has been restored to previous function – which was quite bad enough! – and I regained the skills I'd lost. My ME has improved significantly, I no longer get severe mouth ulcers, the entirely uncharacteristic depression I developed over a year ago has gone without any other treatment, and my peripheral neuropathy, thought to be secondary to psoriatic arthritis, has improved by more than 50%.

    That's a long-winded way (sorry!) to say don't rely on serum testing. It's also important to know that any supplementation in the previous four months can skew tests, even when your body is unable to utilise the supplements properly. MMA testing is much more accurate but not infallible. If you have any reason to think you're deficient, it's worth investigating further.
     
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  3. Mary

    Mary Moderator

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    @TurtleLove, @Moof is absolutely right about serum testing for B12 and folate being unreliable and that it doesn't show how well your body can utilize B12. My B12 levels are always high on blood work, but my former ME/CFS doctor did a hair analysis each year and my cyanocobalamin levels were always almost undetectable. My MCV was borderline high, near the top of the normal range.

    I did B12 shots 3 x a week (self-administered) for a couple of years with no apparent results, tried sublingual tablets still no apparent results, though I think this all helped me, I would have been worse off without it. Then I tried taking liquid methylB12 sublingually, 5000 mcg. 2 x a day, and for the first time felt a boost in energy.

    I do well with methylcobalamin, some people do better with hydroxocobalamin.
     
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  4. Diwi9

    Diwi9 Administrator

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    I was on 5,000 mcg subcutaneous injections every three days and a profile for pernicious anemia is reflected in my lab work. MCV is 106.1. MCH is 36.8. Low red blood cell count and high platelet count. I inquired with my specialist and was told it's because of my medications (I believe the antiviral), and would go back to normal when I stop taking them.
     
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  5. TurtleLove

    TurtleLove

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    It's great you persisted yourself to get such a good result. I have to say - and I should be used to it by now, after years of this - but it still surprises me how little doctors know a lot of the time. I had a doctor want to take my thymus out a few years ago and luckily I did quite a bit of research myself and saved myself an operation that I didn't need! So, thanks for the information. I will definitely think about trying a form of B12. I've had lots of gut issues which can apparently lead to absorption issues (as you say) It's interesting because my mother has fibromyalgia and she gets this little sores on her scalp that I also get - I find myself wondering about a genetic something...
     
    Last edited by a moderator: Jun 17, 2018
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  6. TurtleLove

    TurtleLove

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    Thank you, I think I will trial each of them and see what happens.
     
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