For comment

[lessix]

Anybody come across this before. A tweep says they measure B12 uptake in white cells whatever that means.

[BeeNumber12]

[lessix]

I can't find anything else about the test, Andrea. Sorry.

Good suggestion, Dorothy. Wish I had started my own at the beginning instead of waiting a year to pluck up courage.

[lessix]

Folks, I have found another platform to raise awareness at Scoop-it. Please visit and " like" my page even if you dont! Haha.

[lessix]

Patient partners wanted for Health Research Authority (HRA) workshops in London, Manchester, Newcastle

[lessix]

Found this paper this morning. I have been searching for one for quite a while because I have MTHFR mutations. I think it has important implications for B12d patients with MTHFR mutations. Since the genetically tested B12d people I have come across so far has at least one of the MTHFR mutations (admittedly only about ten people so far) this may have implications for certain members.



At the HCY2013 conference, Drs discussed the unmetabolised Folic Acid found in 10% of Irish children. A country where food is fortified with Folic Acid.

Since we don't know the implications of unmetabolised FA, perhaps it is worth talking to your GP. It was always my understanding that excess Folic was weed out. Now I am not sure.

[anotherwithpa]

Hi Lessix,

Yes there its currently not known if unmetabolised folic acid does harm. I therefore make sure that with all supplements I stay in the ref ranges of "normal". Easy for me to do as I feel well with those levels, a different story for others like Andrea, so it becomes a personal choice, quality of life being usually the choice..

You will find a lot of info in this topic:
viewtopic.php?f=6&t=17

Particularly this is interesting (its not over 200 pages, the last 100 is refrences), see:
http://www.sacn.gov.uk/pdfs/folate_and_ ... report.pdf

I made a topic that gives info to links that found harm from to much folic acid, B12 etc, see:
viewtopic.php?f=6&t=11493

Nothing is ever as simple as it looks, currently its just not known if to much folic acid and or B12 is harmfull or not, only time will tell. America advices much lower folic acid tablets than UK to address a def, but then they have folic acid in food etc.

Kind regards,
Marre.

[lessix]

Thanks ladies, gosh Marre ......i think I will have to be desperate to read that paper even if the last two hundred are refs. Will save it for a long cold winter's day.

They asked for questions from the Twitter audience at the #HCY2013 conference. I asked if I needed to take 5-methyl for my MTHFR mutation.

This was the response
@HCY2013: @b12unme Prof ***** (UniOxford) - Won't do any harm is best possible answer at the moment. Sufficent B12 level is most critical to maintain.

I note they have prudently not allowed my question to stand on @HCY2013 timeline to accompany the answer. The answer I note does not even mention MTHFR by name!

Covering backsides, no doubt. I think it is shocking that UK scientists appear to have made no effort to find out.

Regards some people not responding to 5-methyl despite having 677T, I can only guess perhaps other genes are also involved in folate metabolism and perhaps compensate for the error. I should point out that the study showing 10% of kids had unmetabolised folic acid was only very small. As you say Andrea, I wish understanding was at a more advanced stage too.
I am utterly sick of it. I am sure these questions are much easier to fathom than they are letting on.
Lessix
PS....on the various MTHFR sites it suggests starting with a low dose of 5-methyl and building up. I plunged straight in with 1,000 mcg with no ill effect, but same dose makes my husband crotchety and anxious. He is going try a lower dose as these sites suggest.

[Vix]

It really is a puzzle. I have tried methyl folate a few times now and suffered from what I believe to be detox (which never gets better!) and what I think are folate deficiency symptoms after a couple of weeks (I am MTHFR C677T ++) However I do worry that part of the reason I need so much B12 is because I haven't got the right sort of folate. It is a really tough one to call. I am going to keep trying methyl folate every few months or so I think.
Lessix I can't believe you took such a high dose straight away. Even 100mcg every other day make me feel dreadful (I was taking 5mg folic acid every other day too I wonder if you shouldn't take both?)
Dr Yasko does methyl folate drops (each drop is 100mcg I think) when I try again I might try one drop diluted in water a week.
I think you are right, there are so many of these SNPs I think often they balance each other out. I guess in that sense we are back to judging everything on symptoms and how things make us feel.
Vx

[lessix]

Hi Vix
Yes, straight in with no ill effect. I am not taking 5000 FA, most ever was 800. My folate to my knowledge had never been below range. Unlike you, I am A1298C so only 30% inefficient at processing folate as opposed to you being 70%. I also have another MTHFR mutation but I dont know what that means. I do have B12d snps. By the sound of things you were also much further down the line than me when you were diagnosed. Perhaps you have a lot more detoxing to do than me. Alternatively, I might actually not be detoxing enough because my dose isn't high enough!! How the heck are we ever to know? I do know that if I don't inject B12 every other day I decend into what I think of as halfway between conscious and unconscious. Hubs describes it as vacant and I have to make a real effort to swim to the surface before I can hear what he says. I have been like that all my life but now it takes much longer and is harder to get to the surface when I haven't had my jab.
Whilst I am on about it, does anyone else get head 'futs' ....pronounced as in muts. I notice futfuts at night, some worse than others. I keep meaning to note when they are worse but keep forgetting. Now there is a surprise. Are these the brain farts I have seen mentioned?
Lessix x

[Vix]

HI Lessix
Do you mean noises in your head like thuds, knocks or crashes? If so then yes I do get them and they are definitely related to whether I'm getting enough B12 and I only really get them at night. Sorry if I'm way off track! I know what you mean about the vacant thing as well, I know when I'm getting enough B12 because I feel like I just pop back into actually being present, solid and back in the world again, I just feel actually alive again and not just floating around on the outside of the world. I wish we could get to the bottom of all this methylation stuff. I am still plodding on with the Yasko protocol and will do an update in the next few weeks. I really want to see it through properly but the cost is going to have to stop me in my tracks soon I think, need to work out what is needed before I run out of cash!!!
Vx

[lessix]

Hi Vix,
Not knocks or crashes. These are definitely futs. Lol I don't know how else to describe them. Like tiny explosions I guess and they sound like fut. A bit like the noise a firework rocket makes just as it leaves the ground. I think they happen during the day to, it is just easier to block them out.
Really feel for you having to cough up for the Yasko protocol. I just hope it works.

I found this today. So sad for the little ones. This four year old has PWS. I can't help wonder if it is yet another cobalamin X.
http://pwsnotes.org/index.php/B12_shots

Lessix
X

[lessix]

[Vix]

Hi Lessix
Yes I get the futs as well as the bangs and crashes. Its like a percussion based orchestra in my head sometimes!
Vx

[lessix]

Folks, can anybody put a hand on the paper that says good mental health needs a level of 500 or more? MJ and I have been trying to find it to accompany the Framingham study in response to question from a Twitter Doc. He is wondering how many are being missed.
Cheers
Lessix