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What Should I Do Now?

Posted , 4 users are following.

rose43979
rose43979

I'll try not to drag this out.  I was prescribed omeprazole 15 years ago and took it religiously for 8 years. Nobody ever suggested I should stop taking it. Right from the beginning, my RBC count started to fall. I didn't know about the connection between stomach acid, B12 absorption and RBC numbers. After 8 years I decided I'd had enough of taking medication and found I was fine without the omeprazole, but my RBC count still continued falling and nobody said anything about that either. Then I discovered the connection between RBC count and vitamin B12. Two weeks before my next scheduled blood tests I started taking sublingual B12 and for the first time in 8 years, my RBC count went up by 2 points, but when I suggested that I could have B12 deficiency I was told my test results for B12 were normal. So I started taking B12 sublingually and did ok for a couple of years, but now I find I need to take 8000mcg daily to feel normal and I have never managed to get my RBC count above 4.1 from a low of 3.8. On top of that, four months ago my tongue became swollen and burns or tingles if I cut back on my B12 dosage at all. My GP and a specialist both say because my serum B12 is high, I cannot be B12 deficient.

There seems to be a huge amount of ignorance amongst the medical profession regarding blood test results for B12 deficiency. It states on this site that it causes either low RBC OR low haemoglobin...not both.  Of course my haemoglobin levels are within the normal range, so in "their" opinion I don't have B12 deficiency.

I am just about ready to have a mental breakdown over this. I don't want to go blind, become crippled or die because I can't get a diagnosis!  I live in NZ and we can't buy B12 injections here otherwise that's what I'd do.

I can't help wondering that there might be rare cases where some people can't absorb B12 from the blood and must have it injected into a muscle but of course what would I know? Again I would probably be laughed out of the office if I dared suggest it, but I just wish doctors would listen to their patients and listen to the symptoms they describe. In the 'good old days' before anybody thought up the idea of blood tests, doctors had to 'read' patients' symptoms without relying upon numbers on a chart. They might do well to go back to that method today IMHO.

Does anybody have any suggestions about where I go from here?

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  • chris27080
    chris27080 rose43979

    Posted

    Just another thought for caitlin. A primary source of energy is the Krebs cycle setting up ATP.

    It may be you also have a block there. Most recommend L-carnitine fumarate. I suspect that since you seemed to have arterial spasm that magnesium was involved. From memory the form I use of magnesium malate is the next step in the krebs cycle, at least the conversion is from fumarate to malate or the acids of which these are the salts. Maybe for me the two bits are factors as both the MG and malate had a big effect whereas the fumarate seems to do zilch.

    One indicator is unusual persistent fatigue after exercise eg I could go fishing one day but the next day or two would be a write off.

    You will unfortunately have to explore that yourself for what works for you.

    • caitlin39841
      caitlin39841 chris27080

      Posted

      thank u for both those posts - most illuminating/helpful. will have to sit/research/digest the Lecthin/Choline one. a kinesiologist one told me i was massively deficient in Choline? it'll take some time with massive cognitive fatigue & concentration issues. the b12 have helped measurably with chest pain - what a relief- but not with brain fog or fatigue, but it's early days yet - just a month on it. again big thanks.

      Caitlin.

  • chris27080
    chris27080 rose43979

    Posted

    eI wonder if you mean The magnesium helped over the last month with the chest pain. I gather the brain fog can take some time to clear though I haven't found that. I seem to recall it worked as a protection from overstimulation that is the excitory neurotransmitter or adrenaline vs the sedating noradrenaline. B6 converts the first into the second. I may not have the words right  as they use various names but an overworking sympathetic system v the parasympathetic.  I read it on the site of the woman treating autism not the japanese name the other one.

    I also wonder how you arrived at the 500mcg of B12 every second day. The normal dose is 1000mcg every month or more. I know some people use huge doses but this is using it as a drug not restoring a deficiency.

    I have two reasons for questionning if it is too high. Some people think if some helps more will more, but it may be stimulating too much SAME. Secondly it is possible for the body to cannibalise the required methyl groups in the absence of better sources from B12.. Sure that would make you feel better and need more B12 but may interfere with other processes. After all one only normally needs 5 or so mcg a day plus say 2 times that for catch up. Sure if you are trying to get it into the brain to fix brain damage like Alzheimers  Parkinsons or MS then some advocate  real megadoses but that is real out there stuff and I am sure you don't have those things or it would have been picked up and dealt with.

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