Methylcobalamin vs Hydroxocobalamin

Ive had a bit of a light bulb moment. My latest theory is that my body is not being able to use the hydroxocobalamin injections that I've been receiving from my GP.

The history is as follows: Received 4 loading doses at the end of July and told 3 monthly thereafter, and although there was a little improvement I went back and asked for a further 2 loading doses after a month had passed. Just 3 weeks after the 6th dose, i went back to the GP and asked for more frequent and was told "no way". After a month I had a blood test and went back again to be told I should be fine because all my bloods were within range and as my B12 level was in the 800s I couldnt be feeling the way I was!!!! I then started using patches which contains methylcobalamin and folic acid as well as supplementing with other B vitamins. Many of my symptoms slowly improved and I found that using a patch on Mondays, Wednesdays and Fridays meant that I could function almost as well as any other person - although I still tire easily and I cannot seem to fix my breathlessness.

I had my first 3 monthly injection of hydroxo on 12th December and stopped the skin patches at that point as I wanted to be able to quantify how this affected me. I was very tired first 3 days after the injection, perked up for about 3 or 4 days then went downhill slowly after that. I eventually had to give in and slap a patch on on Christmas day. So I'm now back onto 3 patches a week to keep me functioning.

My lightbulb moment came this morning and I'm reckoning that my body needs the methyl as its ready to use instead of the hydroxo which needs to be converted in the body. I remember reading this somewhere but I cant find it again. Does anyone know where I can find this information on the internet?

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  • I have a doctors appointment on 12th January with my own GP and I was already planning on giving him the BCSH and NICE guidelines as well as a copy of how I'd been feeling with the list of what I had been supplementing with.

    I also have an appointment with a general medicine consultant at the end of January but I'm not too hopeful that he'll have any knowledge of B12d - there seems to be very few doctors who acknowledge it and have any knowledge of it at all!

  • The normal reason for problems with hydroxocobalamin (HOCb) conversion to methylcobalamin (MeCB) is a genetic problem caused by a mutation in the MTHFR gene.

    The conversion of HOCb to MeCB is done via methyltetrahydrofolate which is produced by the reduction of methylenetetrahydrofolate. This reaction is carried out by an enzyme called methyltetrahydrofolate reductase - MTHFR.

    Mutations in the gene that codes for MTHFR are quite common (I have at least two) and can cause problems with the methylation of HOCb to MeCB (although I don't appear to have any problem\0.

    The normal, and obvious, solution is to take MeCB instead of HOCb. But MeCB is really difficult to get hold of in injectable form.

    My solution (and, I have to admit, I've never seen it mentioned elsewhere) is to take supplements containing methyltetrahydrofolate (commercial name - Metafolin). That bypasses the step that requires MTHFR, allowing the methylation of OHCb. I assume that is the reason why I have a couple of MTHFR mutations yet can easily handle taking HOCb.

    If you do some searching on MTHFR and methylation then you'll find a lot of sites that spread scare-stories and FUD. Many of them are trying to sell MeCB supplements. Virtuallu none of them have anything that bears any resemblance to science.

    Laura5 recently posted an article by a dutch group warning about methyl supplements and methylation fears. It says that 5 - 10% of the population have problems with methylation.

    b12researchgroup.wordpress....

    If you want to know if you have a mutation that can effect methylation then you can get a comprehensive genetic test done by 23andMe - 23andme.com/en-gb/ - It costs £125 and gives you lots of health-releated information as well as genealogically useful stuff. I sent my vial of spit away two days ago.

    If you have been tested with 23anMe then you can submit your results to GeneticGenie and they'll give you a thourough report on all the mutations in genes related to methylation.

    Additional:

    I always find a diagram helps - so I drewed one - frankhollis.com/temp/MTHFR.jpg

    If any of the above requires clarification feel free to ask any questions.

  • I use methyl patches too as i felt that the hydroxo injections werent working for me either.

  • Hi Lisahelen, do you use anything else aswell? Do you still get the hydroxo injections? I'm looking to gather as much information as possible so when I go back to the doctor I have evidence of how I felt, what I have been taking, information from the internet etc. As per usual, I have to do the research and go back and tell the doctor how I think I should be treated and why!

  • Doesn't quite argue your case but you might find this interesting

    b12researchgroup.wordpress....

  • Thanks gambit62, very interesting. I'm not going to do anything different at the moment, I'm just looking into it and will be informing the doctor about my theories. After all, we're all different, and one size doesn't fit all with this condition due to its complexeties. I'm also very intrigued with fbirders reply regarding methyltetrahdtofolate.

  • Hello Softpaws,

    Could you tell me the name of the B12 Methyl patches that you are using please? My dad is in the same situation as you. I have seen a few brands advertised on Amazon, although I have noticed that they are manufactured abroad. Do you know of any made in this country ? (I think we have tighter quality checks here in UK). He is a bit wary of buying them from overseas since certain things are approved there, that arn't here.

    Thanks

    Steve

  • I get mine from amazon here

    amazon.co.uk/Vitamin-Patch-...

    However, I've not been using them recently as I'm now getting monthly injections via the doctor. Although this has stopped my pins and needles in my hands and feet, along with some of my other symptoms, I get the impression that the patches (or the type of cobalamin) helped more with my memory loss and one or two other symptoms.

    I was using 3 patches a week for several months, however, looking back I probably should have taken it back to 2 a week. The unfortunate outcome of taking these patches is that it keeps the B12 blood levels high and that didnt sit well with getting any more help from my doctor.

    As I've said before, you've just got to find what works for your own personal situation.

    Best of luck.

  • Until I googled and came upon this site, I had no idea about B12, I was just checking to see if the methylcobalamine I've started on will interfere with the hydroxocobalamine injections!!

    I have had two shots (one a week) so far of hydrocobalamin and of course, not really noticed much difference, too early perhaps. My levels of B12 were 102 (where the acceptable range is 142-650 think it is,) I played "doctor" and bought a bottle of methylcobalamin from the chemist, where one puts one drop under the tongue each day..I decided I'll do one drop 3 times a week (so it doesn't interfere with the shots.

    Now I find out through this site, that I might lack glutathione!!

    Is there any other substance needed to help me utilize the hydroxoc. and methylc.?

    My doctor charges a lot of money and I don't have much, so please excuse me for self-prescribing..I know that can be dangerous. I proceeded with the drops with caution, opting (as I said) for only 3 drops a week.)

    I am a 67 year old lady with a busy work schedule which I had to put on hold as the exhaustion, breathlessness and weakness inhibited me so greatly from it.

    My name is Linda. I did not want LCW8, but I was "bullied" into it by the automatic system! :-)

    But what else do I need to help utilize the two forms of B12 I'm on please?

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