B12 folic acid please help me

[Milley2]

So I inject b12 daily as so many symtoms

Just not getting better

Gp says my b12 is high in range ? -1577

It’s going to be high as I supplement

Every one I know goes on about this 5mg folic acid

Which in beginning I took due to low folate levels

Original reading was b12 at 120

And folste 3

Thing is

I just can’t get better ?

I’m now dsily SI

Or alternate

I understand b12 needs folate

And since I had h pylori

That’s a clear absorption problem here

Why do they suggest 5mg folic acid

And although my diet is goid from foods

I’m clearly not absorbing properly

I need to get the folic acid dose correct for the b12 to work

I know some say b12 works on its own

But in my Case I got sicker wasn’t taking folic

Now the question is how much folic or folate needed really ?

I’m so scared

Getting worse in fact

Any one out there please help with the dosage

I’m nausea

Ear ringing

Neuro issues

Ear humming

Joint pains

Weak

Jelly arms

Jelly legs

Dizzy

Tingeling on hands now traveling to legs

ConstipTion

Shakey

Palpitations

Heart racing

Breathless

Faint like feeling

Generally crap

Loose poo this changes dsily

Had endoscopy all normal

Tummy normal

So it’s defo the b12 thing

Yet just injecting makes me feel so worse

I really do feel I need folic but how much ?

If I take a small amount there’s no difference at all

Every day is different

I feel so terrible every day

Please advice

I know some say No folic but the b12 on one is not helping

[Nackapan]

200 -400mcg folic acid daily as a maintenence dose. You do not need to take more unless prescribed. Read up on it and you will find that is correct.

I'm sorry you are so ill still.

I too am struggling again. Am yet again white as a sheet. So weak today. Tinnitus . Head pain. So back sitting on the bed as shaky. Prepped food.

I think less is more at times ad far as supplements.

Its horrible and such a rollercoaster. I hope a better day for you.

[Milley2 in reply to Nackapan]

How often are you injecting

And thanks for your reply

It’s so confusing

I’m also told that may be methylfolate is kinder to take ?

[Milley2 in reply to Nackapan]

And how long have you been like thus ?

Sorry your as bad to

This is awFull

When where it did you start b12 injections how often ? B12 now

[Nackapan in reply to Milley2]

I presently inject b12 on every 6th day.

My profile says the rest. I seem to get somewhere tiny steps then like a relapse. I might push too hard I really dont know . The nausea was awful yesterday. Not had that for a while . It's the fatigue, ridiculous fatigue. I sometimes think I'm trying too hard . But any stress a big set back. I really dont understand the symptom of chronic fatigue . My bodies reaction to things is alien. So a bit flat at present as I thought I was starting to get somewhere. Only tiny steps mind. I cant read a book. Watch tv. Using this sets of sizzling in my head and my gkasses feel like a vice. But I simply csnt state into space!!

Even sitting on s bench in the garden hurts today ?? Such a nice day too.

Each day is different. Let's hope better ones replace the difficult ones.

[Milley2 in reply to Nackapan]

Ahh no

I’m every other day si

Just not getting anywhere

The nausea is over bearing unable to eat

I just can’t get the dosage of either right

They say monthly b12 yet I can’t do that I’m literally on the floor

Yes it’s a lively day I hope it improves for you

Took to much folic today

So I know I’m going to suffer tonight bad

It’s so difficult to get right

I couldn’t go 6 days really can’t

Diagnosed in June this year progressed worse

[Nackapan in reply to Milley2]

It is early days. At your stage I was every other day too. I did get worse before any improvements.

Just go by how you feel and go steady with the supplements.

[Milley2 in reply to Nackapan]

Do you still supplement on folic acid

[Nackapan in reply to Milley2]

My daughter has 400mcg daily. Sje wad deficient a d initially had a prescription.

My folate had never been out of range. I have 200mcg that's in my multi vit. Something I can absorb!. I have regular blood checks. My ferritin was 29 but now after a year 58. On my blood test before injections started my ferritin 61 so uses that as a baseline as we all operate on different levels. Again 14mg in my multivit and i alternate with solar gentle iron, spartone and ferrous fumerate . 210mg. I have a good mixed diet but since I jections stopped absorbing iron as well.

I need vit d daily and have done for a few years

G.p aware of what I'm doing . You have to be so careful with iron as its complex. But this Is after 2 years of anti trying to get thr right balance. At the beginning I think i over did the supplements ....who knows . So little guidance. My gp doesnt seem to get I'm not absorbing enough. She used to askabout my diet . Said I didnt need vitamins. My bloods said different.

I've written down what I eat .

[Vps1980 in reply to Milley2]

Aw bless you your symptoms sound similar to mine 🙁 how did they diagnose you? Xx

[Milley2 in reply to Vps1980]

Went low this year June

Had loading doses and folic acid

I’ve not been right since

Can’t seem to get the correct balance

Of either

I SI myself as I can’t go a month at Gp

I’m so much worse

I think I need to stop folic acid

Can’t work out what’s not right

[Vps1980 in reply to Milley2]

Aw bless you, are you sure it wasn’t just the h pylori that made you low in b12? Xx

[Milley2 in reply to Vps1980]

I’m not sure may be

But I’ve lots symtoms

If I dint take b12 I’m on the floor weak and like death

[Vps1980 in reply to Milley2]

What symptoms did you have before the injections? I’m worse since I started myself xx

[Milley2 in reply to Vps1980]

Weakness nausea year hissing

Now I’m worse than ever can’t see a way forward

How about you ? Symtoms

And now ?

What do you take ? Daily etc any other supplements ? X

[Vps1980 in reply to Milley2]

I was tired and my b12 was low (not super low) and now I have pain all over my body with burning and numbness, if you want to talk feel free to message me xx

[Milley2 in reply to Vps1980]

My levels show high

But that’s because the b12 injections now

So it’s so difficult to work out

[AGG7]

What are your ferritin levels? I take Floradix liquid iron and it keeps my levels up. I really notice it if I miss a few days. Maybe some info on here would be helpful: b12deficiency.info/signs-an...

[Milley2 in reply to AGG7]

Is that on advice of a Gp ? As my iron was 60

And consultant says it’s fine

[AGG7 in reply to Milley2]

If your ferritin is 60, that should be fine. The link above has a link with folate and iron deficiency symptoms. Also a wealth of excellent info and videos on that site.

[ctilly]

Check out connective tissue disorders like ehlers danlos syndrome and hypermobile spectrum disorder. Postural Orthostatic tachycardia, gastroparesis, fatigue, tinnitus joint pain all come as comorbidities of this.

[LittleA]

Have you had your vitamin D checked out?

If your vitamin D is low that can make you feel really rough as well as low folate.

When I was diagnosed with PA my folate, b12 and vit D were all low at the bottom end. And when I got my vitamin D up it has made a lot of difference to me.

Hope that’s a help

Xx

[Milley2 in reply to LittleA]

Vit d is normal

I think it’s folic acid that’s caused me further problems

The side effects etc

I’m worse when I take it

So I’m going to not take it

It’s like it’s built up in my blood body

And causing many issues x

[Milley2 in reply to LittleA]

My folate is normal

But I continued to take folic acid which had done me no good x

[MariLiz]

Do you take a general B vitamin supplement? I’ve heard that unless you take all the B vitamins as well, things can get out of balance.

[Milley2 in reply to MariLiz]

No I don’t my consultant ssid no to it

My folate level is ok

I was taking folic acid and it’s caused havoc with me

ReLly has very bad issues

My other levels are good like vit d and potassium etc

Which ones are you saying about ?

Folic avid can interfere with b12 issues

I’ve read loads

In my case I have today stopped it

As it was worsening me ?

[MariLiz]

I’m talking about a general supplement with all the other B vitamins. I believe Thorne Research do one that is recommended by others on this site.

If you just increase the B12 but the other B vitamins are low, then things remain out of balance. If we’re low in one vitamin, the chances are, we will be low in others.

My Vit D and ferritin are low, so I’m supplementing those. I also take a probiotic, which seems to have helped my digestive issues.

A lot of it is trial and error. Also, although your blood tests show there is plenty of B12 in your blood. It isn’t a guarantee that it’s reaching your cells, where it is needed to make you feel better. There are genetic reasons why some people can’t absorb it.

Perhaps others on here can advise on this?

[Milley2 in reply to MariLiz]

Yes I know

But that’s from food I think

If you inject or having b12 injections it by psssed that and goes straight in to absorb

Intrinsic factor neg

Parental cell Neg

Hpylori neg now was was there had triple therapy meds

Endoscopy clear

Abdo ct scan normal

[JanD236]

If your folate was low when you had a blood test and your GP prescribed 5mg folate/folic acid then it would be right to take it for the short time that it is prescribed for.

Otherwise, the recommendation on this forum is that you take a safe dose of folic acid (200-400 mcg daily). Excessive folic acid could be harmful.

When you say why do ‘they’ suggest 5mg folic acid and ‘everyone I know’ goes on about this 5mg folic acid I think you’re probably referring to the Facebook group? I understand that the advice given by that group isn’t backed up by scientific research/knowledge.

[Milley2 in reply to JanD236]

Yes I stupidly listened in the beginning

And now I’m paying the price being very poorly

And trying to control side effects here

Yes it was Facebook

And others that I became friends with

Done take 10mg

AwFull

I left the group as I challenged the folic and got abuse from admin.

So that ssid it all

All I know is I’m very poorly after in correct advise on it

I followed a pattern that when I took high dose

I became so so unwell

And I’m trying to recover

But it’s slow x

[JanD236 in reply to Milley2]

Yes I left the group for the same reason as you. They’ve blocked others who challenge their view.

Eat well and stick to the 200-400mcg.

[Milley2 in reply to JanD236]

I hear also that it can interfere folic with b12 absirbtion

As long as it’s within range you shouldn’t take it

[JanD236 in reply to Milley2]

I haven’t heard that folic interferes with B12 absorption but agree with you that so long as your folate stays within range you should be ok with a good diet (lots of leafy greens etc) and no folic acid supplements.

[Milley2 in reply to JanD236]

Just what I have researched etc

But it kinda makes sense

To me

That stuff is vile x

[Scotlad76 in reply to Milley2]

Same happened to me