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.
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.
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!
I was buying from Amazon UK and was buying 2packs at a time to save on postage and was in the region of £24. The same ones have also been on Groupon for a bit less. Haven't posted a link as I'm not sure it's allowed!
If that's in ampoules, its in liquid form that has to be injected. The patches are like sticking plasters - gets slapped directly onto the skin and left on for at least a day.
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.
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.
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.
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?
This is interesting. I’ve been wondering whether I need the methyl patches. Does the methylcobalamin interact with hydroxo? I mean is it safe to take methyl patches and SI hydroxo together? Also, if I could get injectable methylcobalamin (assuming that’s more effective) would I still be able to SI periodically with hydroxo? Minefield!
I took the patches whilst still having the injections every 4 weeks. I don't think you get methyl injections.
I'm not using the patches anymore and since going gluten free over a year ago, I'm stretching out my injections and am currently at 10 weeks intervals. I'm of the opinion I don't actually need them as my absorption issues are down to the gluten intolerance.
It's really a case of trying to find what suits you. Best of luck.
Hi, I think I had the same situation like yours, once they found I have B12 deficiency the GP gave me a few shots within 2wks time and one injection in 3mnts. Every time I try to book the injection soon after the 2nd month as I feel OK maximum for 4-5 wks after the injection, the GP says your B12 levels should be fine....but what they are missing is that the treatment they are giving me only top up my B12 level but not treating my conditions????
So I completely understand your point and did the same I bought some patches and B12 liquids as well, let see how it will work.
Hope it helps you. I would suggest just trying one thing at s time so that you can gauge what does or does not help. As I said earlier it's all trial and error. If you don't mind me asking, what are your symptoms at the 4-5 week stage? I thought I could get away without the B12 due to finding out my fatigue was due to gluten intolerance but I waited 5 months and got tested again, only to find my B12 levels had hit the floor. I was back on the monthly injections but due to covid, my practice was offering tablets (honestly, the NHS in general really has no idea!!!) and I managed to get last month's after finding a sympathetic nurse in the surgery, so I'm currently looking at my options and think I may go back to the patches.
I bet they have prescribed you Cyancobalamin 50g tablets, this is what they gave me. I had an argument with the doctor that no mater how big is the strength of the tablets your stomach just don't absorbs them. I do understand the situation with CV19 but GP is not giving us best alternative.
As a matter of fact I read that Cyancobalamin tablets are dangerous for people like us, and these tablets are excluded from some parts of NHS, and the only treatment should be injection or liquids that dissolves under the tongue. So I took these tablets for a few days but they made me feel very bad and I stopped them.
Back in the days GP was given the injection once a month, then once in two months and now once in 3 months...all because of cutting costs and lives.
So you need to push the GP for the injection.
If you stop the injections you are risking it all, doctors don't really care.
In regards to my symptoms after the 4-5 week: the first thing is that I feel tired, not motivated or depressed, my anxiety increases, change in appetite...
When I try to explain all this to the GP they just don't care, the only thing they say is that my B12 levels should be fine, and when I ask them to have a blood test to check it then they keep refusing as it is not needed.....so you are lucky if you doctor is real doctor not some Muppet that just goes there to take his wages.
Hi Milley2, sorry to read this. I'm struggling too. Just awaiting blood tests from a functional doctor to try to get to the root cause of my 20 year long battle with fatigue and 30 yr depression...and more recently weakness, joint pain. Until my blood and urine tests come back, the doctor advised *not* to take any supplements (or eat any products) with folic acid as this cannot be processed by the body if you have the MTHFR gene variant/mutation. It will make your symptoms worse. If you can afford (my mum is helping after I finally admitted my many years of struggling) I would urge you to through the process with a functional doctor to take out the guess work. Good luck x
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injection type
Tests for B12d?
Bit of a success with frequency of B12 injections 
Hydroxocobalamin
Methylcobalamin
