B12 neuro folic acid

[Milley2]

Neuro bad symtoms there’s so much different advice around I’m so confused most are saying b12 injections are useless without folic acid or folate ?

Others say you don’t need it if your levels are within range So how on earth do you keep track etc if you b12 every other day and if that uses folate you how to know how much to take Done say 5mg a day awfully high I’ve tried that and it was worse much worse some say if your in range and include in your diet then b12 will work dr chandy also said this that as long as your level is not over 20 b12 will work

My point is let’s say your level is 15 to 20

And your ok injecting every other day

Your then folate will drop ?

So when do you know or know how much to take of folic avid or folate ?

It’s a mine field

Others say soon as they stopped folic acid they improved whilst on b12 injections ?

Others say b 12 won’t work without the folic acid or folate along side ?

Which one ? Folic acid or methyfolate ?

I’m no better and ear bell hissing ringing like mad Vibration

Feel sickly feel tired appetite has decreased

Intrinsic factor negative

FIT stool test negative

H pylori waiting results

And parent cell blood test awaiting result

Gets worse on 5mg so I stopped

Really don’t know s I’m going to get through this I can’t take much more

Really upset and fed up of this

My level in June was 124

Had been on loading doses

Then monthly b12

Now SI myself hydrox

Any one gave the same ?

Any advice would be helpfull

[JanD236]

I’m no expert but advice on this forum suggests that 400mcg of folate/folic acid a day should be sufficient. That is unless you started off with a folate deficiency in which case your GP may have prescribed 5mg but this would be taken for a short time only.

For most people the cheaper folic acid is perfectly adequate.

The Facebook group that suggests 5mg of folic acid a day is discredited on this forum.

[Milley2 in reply to JanD236]

I’m confused as to which ?

Methylfoate ir folic acid ?

I’ve heard such bad things with the methyfolate

I did try it and my ear vibration increased yet some say it’s much kinder ? Than folic acid

So I just don’t know

[JanD236 in reply to Milley2]

It doesn’t sound like it was much kinder to you! If it were me, I’d try out 400mcg folic acid a day and a diet that includes plenty of green leafy veg and other folate containing foods.

[Milley2 in reply to JanD236]

Do you inject ?

[Milley2 in reply to JanD236]

If so how often ? Do you take the folic acid on those days ?

[Milley2 in reply to JanD236]

I did originally have the 5mg and my folate level in the beginning went to 3.3

So took it

Then stopped and I do not feel any better

It’s so draining

I think I need to alternate or daily inject ?

Myself

As if I stick to once a month from Gp it’s not enough

Had a injection Thursday and and I’m no better

😔

[fbirder]

Injecting B12 does not (can not) increase your body's requirements for folate. If you inject twice a day you will need the same amount of folate as somebody injecting every three months.

Your body is like a car with an oil leak. Some cars need oil (B12) topped up daily. Other cars need an annual topping up. No matter how often you need to fill your oil reservoir the amount of petrol (folate) you need is the same.

5mg a day of folic acid should only ever be taken on the advice of a doctor. Even then they are only licensed to keep that dosage for four months unless you keep having low levels.

The vast majority of people are fine with folic acid. A very few might benefit from having methylfolate instead.

Women of childbearing potential are advised to take 400 mcg of folic acid (or methylfolate) a day. So that amount should be OK for anybody to take. Anything above 1000 mcg a day for long periods may be harmful and should be avoided.

My advice - take 400 mcg of folic acid a day, every day.

[Milley2 in reply to fbirder]

I’m not sure then why

When I take the b12 I not improving ?

I hear high folate levels can aggravate neuro symtoms

My level was 21.3

So I’m a bit scared to now take it

My neuro symtoms

When I take b12 inject and 400ug folic acid

Are less

Yet if I take the b12 without the folic I dint feel any improvement ?

So others are saying b12 does not need folic acid in order to work

Yet if I just do b12 no improv

B12 and i 400 ug folic acid 6 hours of improve

Yet it died to last the while dAy as symtoms then start returning after approx 6 hours ?

[Milley2 in reply to fbirder]

SI what I’m saying is without folic acid I notice no improvement

With out there is improvement so that kinda tells me the 2 work together ?

As I see no difference without it

With it

Very much improve not that it lasts that long

Wish it did

[fbirder in reply to Milley2]

There is one reaction that needs both B12 and folate to work (the conversion of homocysteine to methionine).

If you feel better when taking B12 and 400 mcg of folic acid then carry on taking B12 and 400 mcg of folic acid.

[mountainice in reply to fbirder]

I am on other groups and they give a kind of sliding scale depending upon on injection frequency. I also get confused about amounts of folate. What is the harm that folate can do if too high for too long

[fbirder in reply to mountainice]

Let me guess. You are talking about the highly dangerous group of Facebook. They are talking nonsense. Complete poppycock. Balderdash and tommyrot. Ask them to explain why injecting more B12 means you need more folate. They will tell you to look in their holy book (called 'The Files'). When you ask which file they will brand you a heretic and excommunicate you from their group.

ncbi.nlm.nih.gov/pmc/articl...

journals.lww.com/co-clinica...

degruyter.com/view/journals...

There is no concrete evidence that high levels of folate are definitely harmful. But the evidence is slowly accumulating that too much folate may have an effect on insulin resistance (the cause of Type 2 diabetes), colorectal cancer, and that it may boost the growth of existing cancer.

Personally, I can see no point in taking that risk for no possible benefit.

[Bellabab in reply to fbirder]

I agree with you. However it is now clear that diabetes type 2 is more likely caused by fat accumulation around the pancreas - reversed by heavy consistent fat reduction in that area. It has reversed my type 2 symptoms and many others have found the same.

[fbirder in reply to Bellabab]

Yup, I managed to do the same, but I've put on 6 kg since March, so I think mine is back again.

But that is just one factor. Various things seem to influence your propensity for Type 2 diabetes. There's definitely a genetic link and several environmental factors also play a part.

[mountainice in reply to fbirder]

Hi, crumbs, you certainly don't like Facebook, or maybe just health groups! I love my sewing groups. I am on about 3 B12 groups but don't necessarily follow what they say, I like to read posts to see people's symptoms etc, especially as well I am on a local group, and as practices are trying to stop or alter injection regime it is good to read what is happening to other people at my surgery - I keep writing letters to the gp! And you don't get shot off the group that easily, mind you some groups don't like you talking about certain physicians. I did get blocked for a week on one of them for that. Thanks for the articles, it is still confusing, but I will stay with my 400mcg a day, but I don't always take that, sometimes miss out. What I need to do is get my levels checked, not had ferritin and folate checked for a while. I asked for D and doc did that. I will make a query about the sliding scale of folate for more B12 jabs and see what happens!

[Elenap in reply to fbirder]

That Facebook group I'm on is Brilliant and has helped myself and others so much. They have files because they can't answer to everyone all the time , answering the same questions over and over, so the files are there to inform.

[fbirder in reply to Elenap]

Ask them where in The Files it says that people injecting B12 twice a week need 5000 mcg of folic acid a day.

[Milley2 in reply to fbirder]

They say twice a week 1600 a day

[fbirder in reply to Milley2]

That's what they say. Who, of any repute, do they base that on?

[Milley2 in reply to fbirder]

Not sure

There’s aboutv4 groups on there saying 5mg daily

[Milley2 in reply to fbirder]

Still think it’s to much I think if you can maintain on own and not let it stop to low then folic acid once or twice a week low dose or through foods is adequate

[Leils]

You'll find your own level. I couldn't tolerate methylfolate so I take folic acid but only 600 mcg per day. I do notice if I don't take it though in terms of negative thought patterns and anxiety. I'm on every other day B12 injections.

I think 5 mg is a lot if your folate levels weren't low to begin with. And I think for a lot of people with low B12 it is easier to raise the folate with good diet and small supplements once the missing B12 is addressed.

Hope that makes sense

[Leils]

(The 600 mcg is a 400 mcg tablet plus my B complex has 200 in it).

[Cherylclaire Forum Support in reply to Leils]

Exactly what I did , Leils, and found after a couple of years, it had got to a high level and was able to stay there without help.

Originally had 3 months of folate and ferritin on prescription, because although neither was below range, folate at lowest was 5.5 and ferritin 36 - low enough to cause me some problems. Now both resolved and only need multivit&mineral daily (plus B12 injections of course !)

I don't know how I would have been able to improve things for me without the GP testing regularly, monitoring and advising, because it was difficult to stabilise both, and took a couple of years.

All-round improvements: methymalonic acid (MMA) finally also now within range for the first time.

Never tried methylfolate.

[Milley2 in reply to Cherylclaire]

How often do you take b12 I jectins ?

[Cherylclaire Forum Support in reply to Milley2]

Now, it's every three days for me, but that's me.

Most people work out when symptoms start to return and try to pre-empt that. I can't do that as I can find no real pattern and I haven't had a symptom-free day in 5 years. Yet.

However, it has very gradually giving me general improvements and most symptoms are less frequent, not as severe and some are rare visitors now.

It is a different story for everyone here, so hard to get definitive answer about what will work for you.

I suggest you start with a daily record: chart frequency and severity of your symptoms, mark in when injections given, and see if a pattern emerges first. This might help you to see when injections become necessary- then ensure you don't have to deteriorate prior to each injection.

[Milley2 in reply to Cherylclaire]

Yes I keep a log

I think where this confusion folic acid etc made me worse as I silly listened to Facebook 5mg sent me all over the place so it’s been hard working out what’s doing what ? As to much folic can agitate a b12

Problem

So I’m no where near out if the woods

I get monthly b12 at Gp

That’s been hard work in itself

But also hVe the b12 myself to do

I’ve been all over the place with folic acid but defo know it’s makes me worse 100% worse

So I’m trying to eat right etc to maintain my level of folate

And blood test it every so often

Each day is diff

Just when I think I’m recovering

Things go bad again prob cause I then panic

Inject or take folic again

I need to try monitor this better

[LittleA]

I’ve had a bad experience with doctors telling me I’m fine because my levels are good then I’m taken off the b12 injections and then my level plummets and have loading doses again, my original diagnosis was found and that’s it my doctors can’t tell me I don’t need them any more.

My advice for you would contact your gp and ask for when your original diagnosis was made and ask for a copy if they avoid the question you can request your information from them your self and have a look.

My folate acid has been low and I have vitamin D deficiency which can cause your fatigue and other symptoms along side your B12 deficiency

I would get a test for folate acid and vitamin D because it is needed to help other vitamins too.

I don’t understand what the other folate your taking, it’s always been folate acid.

Hope this helps, sorry your really suffering with your symptoms

[Milley2 in reply to LittleA]

Folate is ok now was low now in range all other is ok vit d etc

Are you on monthly b12

[LittleA in reply to Milley2]

That’s good all your vitamins are good.

I’m on 2 and a half months at my doctors and in between I inject myself. Even though the guidelines say 2-3 months my docs will not budge so I’ve have to do the injections my self part way. Without having a top up I’m bed ridden

[Rex2020]

Miley2 it’s been 7 weeks since I started injections.. and I feel a lot better but still up and down.. good days and bad days. What you need now is time to let your body heal. Taking too much iron folate and even b12 was making me feel ill. The lowest dose for what you need is best. A daily multivitamin is a good place to start. I hope you feel better soon- hang in there.

How long has it been since your first injection?

[Milley2 in reply to Rex2020]

June four weeks of alternate b12 then monthly

But I SI to

Was thinking this myself maybe it’s to much

The only thing really bothers me is ear ringing vibrations and my appetite has seemed to have gone

[Elenap]

You should have your folate levels recorded on your blood test. If it's ok you shouldn't need to take folate.

[Milley2 in reply to Elenap]

Folate is fine now facegroup says 5mg with b12 injections seems high to me

So I haven’t taken now since I stopped I’m getting better

[Mrshughes30]

My doctor prescribed me 1mg of folic acid daily and said I shouldn't take anymore. I felt better within 48 hours and within a month my levels improved. I take liquid iron as well and I have read that you usually need the combination of both drugs to see improvement.

[Milley2 in reply to Mrshughes30]

I think if your folate is optimal then you shouldn’t need it

You may need it at first if levels are low to get you where you need to be

[Mrshughes30]

My folate level was down to a 3 and I had no energy I couldn't even make my own bed in the morning. Everyone's symptoms are different.

[Milley2 in reply to Mrshughes30]

Same mine where 3.1

Had b12 then folic acid 5mg fir 3werks

Level us maintained now through diet food

And regular folate FERRITEN blood tests

B12 monthly at Gp