Confusion over conflicting information regarding low b12

[Isycampbell]

Was diagnosed with low folate last year and borderline b12 Prescibed folic acid for three months ,new blood tests low b12 177 range 180-2000 .serum folate 5.1 range 2.8-20 ..Intrinsic test negative for pa ,although I have heard test is not reliable .Started b12 injections and have had first six loading shots .My son carriers two mthfr genes gs192 and c677t so take it I also carry these mutations .Three generations of female line have all had pa .My question is should I be taking folic acid or another vitamin ,conflicting information as it is stated if you carry these variant genes that you can't take folic acid .Not sleeping well since b12 shots snd extremely irritable ,any feedback would be welcomed .regards Isy

[Polaris]

Hi Isycampbell

My understanding is that Methylfolate is better as, if you have MTHFR gene, folic acid is not well absorbed.

Your very low Vitamin B12 needed to be treated first as, if vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood:

Sally Pacholok, author of, 'Could it be B12 deficiency - an epidemic of diagnoses'

Haemotologist's quote from the video :

"If you treat someone with B12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

........

Latest BMJ research document:

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord."

............

If you have neurological symptoms, B12 injections should be given "every other day until no further improvement" - as per British National Formulary in the above research document and BCSH Guidelines.

Many of us on the forum find it can take some time to notice any improvement In symptoms depending on how long you've had them, etc. and can initially feel worse. I personally have been self injecting for over a year and now feel hugely improved but any stress or overdoing things sets me right back and does affect sleep. Also a good idea to ensure other vitamin levels, etc. are optimal too.

I hope you begin to feel much better soon.

PS. Lots of information and links on the R/H side of the forum

[fbirder]

The MTHFR gene has no influence at all on the absorption of folic acid.

Only one MTHFR mutation has been shown, by reputable scientific studies, to have any significant effects. That’s being homozygous for the C677T mutation.

If your son has a single copy of that mutation then it’s possible that you also have one, or two copies of it. Or it’s possible that he got it from his father.

If he is homozygous for that mutation then the chances are 1 in 2 that you are also homozygous.

So you can take a genetic test to see if you are homozygous, or you can take methylfolate supplements. I am homozygous for C677T and I take 400 mcg of methylfolate every other day.

The chances are that folic acid would work perfectly well. But if you don’t want to play the odds spend the extra on methylfolate.

[Isycampbell in reply to fbirder]

Thanks for the info will buy the methylfollate .Regards Isy

[MTHFR_Allele in reply to fbirder]

Hi

I have rs1801133(C;T) and rs1801131(A;C), so two SNP variations, both heterozygous.

I've read that rs1801133(C;T) in isolation reduces your folic acid processing capability to 65% of baseline and that (T;T) would reduce that further to 10-20%, as you stated you have. Do you disagree with my first statement?

What's not clear to me is whether there's any interaction with the two above SNPs that could lead to further increased folate deficiency and higher levels of homocysteine in the blood.

[fbirder in reply to MTHFR_Allele]

Yes, being heterozygous for the C677T mutation will reduce the efficiency of the MTHFR enzyme to about 70% of normal. But it’s easy for the body to compensate for that just by making a little bit more of the enzyme. F

Indeed, it’s likely that most people who are homozygous for that mutation can also compensate. If it really were serious enough for 10% of the population to be affected then it would have been noticed years ago. It wouldn’t need dozens of studies to find what might be an effect in a small number of people.

Similar numbers of studies have been done on the A1298C mutation and none of him have found any repeatable results for negative effects.

Studies have also been done on the combination of the two. Again, no repeatable significant adverse effects have been found.

About 50% of people are heterozygous for C677T and 50% for A1298C. That means that a quarter of all people will have both. If that many people had even the slightest problem then it would be easy to show such an effect.

The genetic testing company 23andMe s about MTHFR...

Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health

[MTHFR_Allele in reply to fbirder]

Thanks for the detailed response. So would you caution against L-5-Methy in my case or no harm done?

[fbirder in reply to MTHFR_Allele]

Methylfolate and folic acid are, effectively, identical for just about everybody. The only difference is that folic acid is more expensive.

So taking methylfolate will not cause any more harm than taking folic acid, which the NHS recommend for everybody.