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Do I need to treat folate now, or when my b12 levels are ‘normal’?

Misha- profile image
23 Replies

Hi there!

I have finally managed to get my doctor to give me loading doses (after treating me with just one b12 injection as a loading dose).

My b12 is 121 and folate is 3.

My question is, should I be taking folic acid tablets daily along with the every other day loading dose injections? The doctor has said it’s dangerous and can cause nerve problems in my spine. But I have read elsewhere that b12 does not absorb without folic acid.

My doctor also said my folate level of 3 is perfectly fine. Is this true?

Thanks!

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Misha-
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23 Replies
clivealive profile image
clivealiveForum Support

Hi Misha- your Folate level is borderline low

I suggest you have a word with your pharmacist/chemist who can supply low doses (400mcg) of folic acid cheaply over the counter.

I am not medically trained.

I wish you well

Misha- profile image
Misha- in reply toclivealive

Thank you very much for replying! I was going to buy them, however what the doctor said has worried me. He said taking folic acid alongside B12 can cause permanent and severe spinal nerve injuries. I don’t want to go against his word, but I can’t find anything to back him up.

helvella profile image
helvella in reply toclivealive

If in the UK, happened to see Morrisons Folic Acid is even less expensive than Tesco:

£1 for 180 * 400 microgram tablets

groceries.morrisons.com/web...

clivealive profile image
clivealiveForum Support in reply tohelvella

Wow!

fbirder profile image
fbirder

B12 does not need folate to be absorbed. Besides, if you're having injections then absorption isn't a problem.

The doc is correct that taking folic acid with low levels of B12 can exacerbate the neural damage caused by the B12 deficiency. But once you've started your injections then you don't have low B12.

I would start taking 400 mcg a day of folic acid the day after my second loading dose. By then your levels will be sky-high. Check out the local supermarket for cheap, good quality, folic acid. Your level of 3 is borderline. 400 mcg a day cannot do any harm (women of childbearing potential are advised to take that much every day).

Miss-guineapig profile image
Miss-guineapig

Hi Misha, when I was first diagnosed my folate was low. My Dr prescribed 5mg folic acid every day for four months, I now continue taking 5mg every second day, as prescribed and this will always continue. Hope this helps. Folic is vital to make healthy red blood cells. Wishing you all the best. X

fbirder profile image
fbirder in reply toMiss-guineapig

You should not be taking such high doses of folate.

Doctors do prescribe high doses to boost very low levels (like a B12 loading dose) but only for a short time. Long-term use of high doses may be harmful - ncbi.nlm.nih.gov/pmc/articl...

Miss-guineapig profile image
Miss-guineapig in reply tofbirder

Thank you fbirder, I'll read about this now. I wonder why my GP would say that? What doseage would you suggest, and how often? Thanks again x

fbirder profile image
fbirder in reply toMiss-guineapig

Women of childbearing potential are recommended to take 400 mcg of folate each day. I think that should go for everybody with a B12 deficiency caused by an absorption problem.

Miss-guineapig profile image
Miss-guineapig

Misha, I am reading the article fbirder suggested, some of it way too technical and conflicting. But it made me think about stopping Folic for now till fbirder can maybe explain it easier to me and I will also raise it with my GP he next time I see her. Although, unfortunately I can just imagine she will say it's ok, without reading the research. We are all always learning for sure! X

Misha- profile image
Misha- in reply toMiss-guineapig

I find the same. All of the research seems to conflict another piece, and most of it is too technical for me to understand.

I am in a B12 group on Facebook and they insist that you should take folic acid daily when having B12, I know that most of them take it so I wouldn’t worry too much. But yes, asking your GP is definitely the best option. Hopefully you get answers soon! X

fbirder profile image
fbirder in reply toMisha-

That Facebook group should be banned. There is no need at all for anybody to take 5000 mcg of folic acid a day.

If you ask them for evidence that shows it is necessary they say to read their ‘files’. Ask which file and you get told to read their files. Ask which file and they tell you to read Sally Pchalok’s book. Say that you have read it and ask them for a page reference and they ban you from the group.

There is no evidence that anybody needs that much folate. There is some evidence to suggest that much folate may be harmful.

Miss-guineapig profile image
Miss-guineapig in reply tofbirder

You are right there fbirder because when I was first diagnosed that was the only group I knew about. Some people were so rude and it was clear their research knowledge was extremely limited. I trust what you say and will certainly explore my folic acid prescription. I've just checked, incase I got it wrong, and it is Definately 5mg every alternate day, so that needs discussed. Thanks again x

Miss-guineapig profile image
Miss-guineapig in reply toMisha-

I agree, my GP did have me on it daily but after 4 months as I said, she wanted me to take it every second day, saying that was sufficient and best treatment . In fairness she has been great and does seem to know the topic but people on here are knowledgeable too. I'm going to read what the sign/nice guidelines say, as that's important and more likely what my GP will follow. Thanks fibirder too though x

fbirder profile image
fbirder in reply toMiss-guineapig

This is what the NHS recommends: nhs.uk/conditions/vitamins-...

The Department of Health and Social Care recommends that folic acid supplements are taken by all women who are pregnant or could get pregnant.

Women who cannot get pregnant and men should be able to get all the folate they need by eating a varied and balanced diet.

If you're taking folic acid supplements, it's important not to take too much as this could be harmful.

Taking 1mg or less a day of folic acid supplements is unlikely to cause any harm.

Nice says:

How should I treat a person with folate deficiency anaemia?

Prescribe oral folic acid 5 mg daily — in most people, treatment will be required for 4 months.

However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent.

Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.

Give dietary advice about foods that are a good source of folic acid — good sources of folate include:

Asparagus.

Broccoli.

Brown rice.

Brussels sprouts.

Chickpeas.

Peas.

Nackapan profile image
Nackapan in reply tofbirder

Do you know if there is a problem if folate is above range?

It doesn't give a number just above 24 I think ng/l

Its come above on the last 2 blood tests.

I'm only having 200mcg every other day in s multi vit.

I'm having 3 monthly bloods at present as on iron.

Looking at the list above you've posted it's no wonder I'm okay on folate and obviously csn absorb that as eat most of the above regularly

Nackapan profile image
Nackapan in reply tofbirder

I know it says may be harmful buf I cant find out why

fbirder profile image
fbirder in reply toNackapan

Nobody knows if it is harmful in the absence of a B12 deficiency. So there's no way they can know why. There is a fair chance it isn't harmful or is only harmful in certain circumstances. But there's no harm for most people taking a low dose.

I wouldn't worry about having a lot of it in your blood. My friend has high folate but that's because she eats about 12 portions of vegetables a day.

Nackapan profile image
Nackapan in reply tofbirder

Okay . Thanks for that . I didnt really want to get into buying vits separately apart from Vit D. I've taken for a few years

Miss-guineapig profile image
Miss-guineapig in reply tofbirder

That's reassuring thank you Nackpan x

Miss-guineapig profile image
Miss-guineapig

Thanks Fbirder, I am going to get a blood test, as when I was diagnosed with PA, there was other deficiencies in my blood. I never asked re last blood test but want to check I haven't got a folic deficiency as ongoing. If that's all good, I'll chat with my GP re this doseage. I'm smiling as I thought all was going well and meds were right, but heyho it just goes to show x

Nackapan profile image
Nackapan in reply toMiss-guineapig

I'm having trouble getting mg folate checked on it's own. Last time it was done with b12! I realise this is good practice before treatment but not great when on injections and dont need the b12 test. Just incase its ths same where yoh are it needs to be stated b12 not needed on the form.

fbirder profile image
fbirder in reply toMiss-guineapig

I wouldn't worry unduly about taking 5000 mcg every other day. But I would ask for a blood test to see if it's needed.

If you have PA then the lack of stomach acid that it causes can cause problems absorbing other nutrients, especially iron, Vitamin D and folate.

But it's only folate from food that has its absorption affected. Folate in food comes attached to multiple molecules of glutamic acid which have to be removed before the folate can be absorbed. This process is impaired in people with PA. Folic acid (or methylfolate) in supplements do not have these extra bits, so they are much more easily absorbed.

That's why most people should be fine with 400 mcg a day.

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