Pernicious Anaemia Society
15,509 members10,917 posts

B12 and C677T gene mutation

Hi, I have the above gene mutation which is suppose to mean I need more B12 but tried to take it in pill form and felt awful, found out I have very low stomach acid probably for a long time so started taking HCL with betaine. No matter what I take in pill form it makes me feel worse, so I'm trying liquid B12 and can tolerate that.

My question is how can I have a high normal B12 (832) and still need B12? Is it because the body doesn't utilize it so the stores in my body get filled up but at the cellular level it doesn't get utilized? Help?

15 Replies
oldestnewest

After very quickly reading up... it's not actually B12 that seems to be the issue, it's the fact you cannot properly use Folate, (unless I'm reading it wrongly) but they give B12 and folate (are you on folate medication?!) to counteract the mutation:

mthfrgenehealth.com/mthfr-v...

So perhaps the issue isn't that you don't have enough B12, but more that you don't have folate - the important bit required to metabolise B12.

Again, have you had a folate test, or been put on folate medication?

It seems you SHOULD be on Folic acid

and Vitamin b12 as cyanocobalamin.

IF you are not then I highly suggest you go back to your GP and ask why you are not.

Hope this remotely helps?

EDIT:

"So, if your vitamin B12 is not working properly because your folate metabolism isn’t working properly this causes homocysteine imbalances which is considered a serious health problem for anyone especially for those with mthfr gene mutations. If you are positive for mthfr a good homocysteine reading should be between 7 – 8 umol and vitamin serum B12 levels should be above 500 – 800, if this is not the case you should seek a mthfr treatment."

Whoever told you your reading of 832 is high normal is "talking out of their backside" especially for your condition.

1 like
Reply

I believe a lot of my problems because I haven't been able to absorb foods for a very long time because nobody knew I had low stomach acid so I started having a lot of tests done one was the MTHFR mutation I have not been taking file a but have been taking sublingual B12 liquid should I be stopping that and starting the folate

1 like
Reply

You should be on both folate AND B12 in the form of cyanocobalamin

Considering it can cause severe implications if you don't have the treatment, your doctor should be providing this on the NHS. (but as I've been fighting to have my injections reinstated for 9 years, I am not surprised)

However- I am assuming you're in the UK so that could be wrong.

You need folate - I'm on folic acid 5mg daily for four months, but according to that website I read, you'd probably need it for a long long time, possibly always.

As for the B12, I don't think sublinguals are the cyanocobalamin form, I think they're methylcobalamin wotsit (that's what Mine are anyway)

ALSO - we only absorb 1-3% of the sublingual so it will probably not be enough.

I highly suggest you seek your Doctor's help. Especially with your stomach acid issues - we all need stomach acid to break down our food into usuable form. You could be deficient on SO MANY vitamins/minerals *facepalms*

PLEASE PLEASE see your GP. Print off information about your condition and how it SHOULD be treated.

B12 deficiency on a cellular level (caused by your folate issues - therefore you may have 800+ in your blood, but your cells aren't getting anywhere near enough!) is serious and should be combated as soon as possible.

A quick example - I have had my injections removed in 2008, I am now severely disabled - cannot move from my chair, only into my wheelchair with assistance and I have regular days where you'd think I should be in a care home with dementia (B12 deficiency can cause dementia) so this is important that you get sorted AS SOON AS POSSIBLE!

2 likes
Reply

Thank you I will be getting this checked out I'm I live in the United States and I know that my B12 is off but I didn't realize I needed to also take B9 I also know that I've had malabsorption now for a long time and I'm trying to eat very clean no gluten no Dairy and have been doing that for a year on top of that I have Hashimoto's thyroiditis I'm also taking HCL with B18 with every meal so that the nutrients can get broken down and into my body I'm so sorry you're having these problems and don't understand why they can't give you the injections

Reply

First of all, are you heterozygous (one copy) or homozygous (two copies) of the C677>T mutation?

If you are heterozygous then it will have virtually zero effect. The stability of your MTHFR enzyme will be reduced slightly. But the body can easily compensate by making extra enzyme.

If you are homozygous (like me and abou 9% of the population) then the enzyme works at about 30% efficiency. For most that will have no major effects. For some they will benefit from supplementing with methylfolate - about 400 ug a day will be enough. For those people folic acid itself might not do much good.

No mutation in the MTHFR gene can effect the amount of B12 you need.

You can tell if you're having problems with folate by getting a blood test for homocysteine. The methylfolate made by the MTHFR enzyme is used, along with B12, in a reaction the gets rid of homocysteine. If you have low levels of methylfolate and/or B12 then homocysteine levels in the blood will rise.

3 likes
Reply

Thank you for clarifying and correcting me, I was just going by excerpts of the website and most probably getting it all wrong in the process.

1 like
Reply

I have the same mutation that you do have read a lot about it but I just don't know what to do my doctor ask me to try that l methylfolate in pill form and I did that and started feeling worse so after that is when I found I had low stomach acid and wasn't breaking down nutrients since then I've started B12 sublingual which I can tolerate and I believe I'm starting to feel better but about the B9 not sure what to do

Reply

Not everybody with a homozygous C677>T mutation will require methylfolate. And there are some other mutations in other genes that seem to make people sensitive to excessive methyl donors, like methylfolate.

If you eat a balanced diet, with leafy green veg, nuts, seeds, legumes, etc., then you probably get enough folate in your food.

2 likes
Reply

I am eating a lot of leafy greens but with the low stomach acid that's been going on a long time I worry that nothing has been absorbed. I also have allergies to nuts and seeds, maybe that will go away when SIBO goes away

Reply

Hello. You might try lightly stemming your vegetables. I find this helps make digesting and absorbing easier.

1 like
Reply

People with Pernicious Anaemia have low/no stomach acid (Hydrochlorhydria / Achlorhydria ) Have you been tested for that? (I.F.A. test) Intrinsic Factor Antibodies test . If you do have P.A. then B12 injections will give you greater benefit than oral tablets .

2 likes
Reply

I've never been tested for that pernicious anaemia. I have hashimoto's.. I have really changed my diet for the past year and have been going to a holistic doc for SIBO but now I wonder if it was just the low stomach acid and not SIBO at all. Is ferritin checked by stool sample? If I remember correctly my lactoferrin was positive which just means my gi was inflamed. I've also had IBS forever literally since I was a little girl

Reply

Low stomach acid can cause SIBO , because the bad bacteria in the gut is not kept in check by the acid . I believe that ferritin is checked in a blood sample . Hashimotos is an autoimmune condition . Autoimmune conditions seldom come alone . Pernicious Anaemia is also an autoimmune condition . Best wishes to you .

1 like
Reply

thank you

Reply

I've started taking a digestive enzyme pill with my meals. Don't take them before meals they will give you an upset stomach. They seem to help me digest my food better. Not as much gas after eating fiber and dairy.

1 like
Reply

You may also like...