Hydroxocobalamin: Hey I have been... - Pernicious Anaemi...

Pernicious Anaemia Society

23,563 members16,634 posts

Hydroxocobalamin

lucasussex
lucasussex

Hey I have been having Hydroxocobalamin 1mg since last year as my doctor said I was low in B12 I was oly having the injections every 3 months, I joined B12 support group on Facebook and started self injecting from 9th September I have had 3 loading dose and take 5mg folic acid which make me feel so sick and dizzy as my folate was low! And have high potassium diet I have also have tummy problems etc day of injection I feel great next day feel like got flu stomach cramps rashes feel sick sooo tired and itching dizzy dunno what to do as B12 injections are giving me life

53 Replies
oldestnewest

Please immediately stop taking 5 mg of folic acid daily

Please take a modest tablet of 400mcg daily . That’s more than enough .The overdosing of folic acid is giving you the cramps and dizziness etc. That B 12 group on facebook has a bad name with us I’m afraid .

With very best wishes .

+ 1

JOLLYDOLLY
JOLLYDOLLY in reply to wedgewood

I agree, I have been quite alarmed by what people are taking and self injecting to the extent they are. I know we are all different, but I wonder if too much injecting is doing more harm than good as well as the supplements themselves. I thought you only took the folic acid, if you were iron anaemic or pregnant?

wedgewood
wedgewood in reply to JOLLYDOLLY

You can’t over-dose on vitamin B12, but you can on folic acid . You don’t need to supplement on folic acid if you eat plenty of veg and fruit that contains folate ( “ 5 a day!”) But so many people don’t eat their 5 a day ,so a modest 400 mg tablet of folic acid is a good idea for P.A. patients as it works synergistically with B12 . Women who want to get pregnant are recommended to take that amount too , as it prevents certain birth defects like spina bifida. P.A. is a form of Anaemia, but it’s a vitamin b12 deficiency that causes it , not iron deficiency as in the commonly called “Anaemia” .

JOLLYDOLLY
JOLLYDOLLY in reply to wedgewood

Oh I am aware of the different anaemia's as I have had both PA and iron anaemia in the past, but "only" PA now.

wedgewood
wedgewood in reply to JOLLYDOLLY

We are on the best possible site here . So glad that I discovered it . Best wishes .

JOLLYDOLLY
JOLLYDOLLY in reply to wedgewood

Totally agree, I left the other group. A lot of misinformation on there. You take care as well.

Foggyme
FoggymeAdministrator in reply to JOLLYDOLLY

Jollydolly. I second all that wedgewood says...especially about B12 injections.

The one-size-fits-all NHS treatment regime is not sufficient for many people to remain well and symptoms free because ill-informed GP's regularly refuse treatment - or a frequency of injections that meets an individuals' needs (in much the same way that those with thyroid issues are denied treatment or incorrectly treated by ill-informed GP's)

Many with PA or B12 deficiency are forced to self-treat with B12 injections to prevent neurological damage, remain well and achieve some semblance of quality of life.

Here's a link to a PAS survey that asked forum members what frequency of injections they needed to maintain good health:

healthunlocked.com/pasoc/po...

The PAS have succeeded getting the BNF Treatment guidelines for maintenance B12 doses changed from three monthly to two monthly - but that is still insufficient for far to many people. They have continued to lobby on behalf of PA patients and NICE have now agreed to produce treatment guideline specifically for those with PA (there currently aren't any). It's hoped that the new guidelines will address the issue of inadequate treatment options and make it easier for people to get the appropriate frequency of injections to enable them to get and remain well (or as well as possible in the case of those who have permanent neurological damage failures in diagnoses, lack of treatment...or under treatment, once diagnosed).

In short...the correct frequency of injections is as many as are needed to keep symptoms at bay and maintain good health. However many that is.

B12 is not dangerous, toxic, addictive...or a placebo - despite what many doctors mistakenly think.

Insufficient treatment with B12 injections can result in an extremely poor quality of life and, potentially, irreversible neurological damage.

Failure to treat always - ultimately - results in death.

So...sorry you’re alarmed at how many people have to self-inject vitamin B12 - and how often they have to do so. In short...it's quite shocking that failures in diagnosis and lack of appropriate treatment force people down this route - because they have no other option.

So, to clarify for the sake of those reading (some of whom may be new to the forum)...injecting 'too much' B12 is most certainly not 'doing more harm than good'.

The human body is like a car - we all need different amounts of petrol and oil (and B12) to keep us running smoothly - and harm most certainly occurs when not enough is available.

👍

JOLLYDOLLY
JOLLYDOLLY in reply to Foggyme

I agree one pill does not fit all - as I have thyroid condition as well as B12/PA. Totally get that. But I have been alarmed by how many jabs. A B12 jab every day seems a lot to me, that is my own opinion - certainly not making judgement on anyone. I have had health issues all my life and I know how Dr's can lie their way out of things, just to save a few pennies here and there.

Wow B12 jab everyday wow! I am so silly just took folic acid at night 😭

Foggyme
FoggymeAdministrator in reply to JOLLYDOLLY

It’s not a lot if that's what it takes to remain an upright functioning human being... 😉🙂

The mistaken concept of ‘too much' B12 is what causes many GPs to withhold treatment or radically under-treat their patients. With dire consequences for those patients!

Really can tell me more? Thanks

As wedgwood says. That amount of folate should not be taken

Only under strict supervision of a doctor. It will give horrible stomach cramps.

I was prescribed ferrous fumerate mixed with folate. I took it once. !

Made me very ill

200mcg of folic acid was all I needed.

If you are of child bearing age. 400mcg folic acid. And yes never take potassium supplements unless prescribed.

Hope you see improvements on your b12 regime

Doctor gave me 5mg of folic acid to take

Foggyme
FoggymeAdministrator in reply to lucasussex

Lucasussex.

How long have you been taking the 5mg dose of folic acid?

5mg folic acid is prescribed for a proven deficiency but only taken for three to four months. GP should then test to ensure folate deficiency has resolved. If this is the case, some people take 200-400mcg as a maintenance dose but some don't need to take that.

The Facebook group of which you speak advises that those on frequent injections should take 5mg daily on a long-term basis, mistakenly saying that B12 'won't work' without it. This is not true. Peer reviewed research published in reputable medical journals shows growing concern about potential damage that may be caused by long-term over supplementation with folic acid (i.e. neurological damage et al).

The sickness, dizziness and other symptoms you are now experiencing may be due to over-supplementation with folic acid if your original folate deficiency has been resolved.

So...in short...only take the 5mg dose for three to four months (maximum) then ask your GP to check your folate levels. If these have returned to normal please do not continue with the 5mg daily dose. The usual maintenance dose (which is too much for some and some don't need) is 200-400mcg daily.

Good luck. 👍

lucasussex
lucasussex in reply to Foggyme

I Anit taking folic acid anymore my dose will be next week I will been other doing it on B12

I'm about to be banned from that Facebook Group again because I've just put up a post saying there is no scientific evidence at all that people injecting B12 need 5000 mcg of folic acid a day.

Here is the complete garbage they suggest -

If you are self injecting and choosing to inject daily or alternate days, then you must supplement with 5mg (5000 mcg) folic acid daily or the equivalent of 5mg (5000 mcg) folate, daily. This continues until you decrease injections.

B12 injections twice per week require 1600 mcg (1.6mg) folic acid/folate daily. B12 injections once per week require 800 mcg folic acid /folate daily.

It is taken from some commercial website called "Act Natural Health and Wellness" which is selling 'natural' remedies and folic acid.

If you are a member of the B12 Support Group on Facebook please post this -

"Where is the scientific evidence that injecting B12 increases the body's requirement for folate?"

If you're not a member then request to join and post the same question. Don't worry, you'll not be a member for very long. Because you've challenged one of their major beliefs, you will be banned.

Foggyme
FoggymeAdministrator in reply to fbirder

That’s shocking fbirder.

'MUST supplement with 5mg folic acid daily...and continue...until you decrease [every other day] injections'. [my capitalisation and bold]

MUST!!! Wonder if they’ve heard of the now-not-so-new Online Harms regulations?

Please - all - do not follow that Facebook Group's advice - and please challenge if you see this advised on the forum (with a thank you to those who already do).

👍

fbirder
fbirder in reply to Foggyme

I've been beating my head against the wall trying to find out how to report a Facebook group for medical misinformation. And it seems the place is rife with it - bbc.co.uk/news/technology-5...

Foggyme
FoggymeAdministrator in reply to fbirder

Yep...it’s a real problem. Especially worrying because this group do not appear to keep up to date with current research and are not prepared to check information and facts, when asked to do so (or challenged). Parrot fashion unthinking advice and following advice from a commercial website is unforgivable!

There's little point in posting research papers about this because my understanding is that they just delete them!

I don't do Facebook but...is this group the one that’s connected to Tracey Witty (I know that one of them is but couldn't say whether it’s this one, or not)?

Might be worth posting again (if you haven't been banned yet) and asking if they've heard of the Online Harms Regulations...which they 'may' (ha) be infringing. Anyone with half a brain cell would surely want to protect themselves - if not those that they seek to advise!

As to where to report them - no idea fbirder... but I'll keep that on the radar and if I discover anywhere...

fbirder
fbirder in reply to Foggyme

No. Tracey runs a very useful group that doesn't hand out such stupid advice.

Thanks for the heads up about Online Harms Regs. Unfortunately it looks like the government have abandoned it. bbc.co.uk/news/technology-5...

LittleA
LittleA in reply to fbirder

You can report to a group to fb, or you can report a person so maybe who ever is in charge of the group needs to be reported.

You can go to the group members section and find out I think.

fbirder
fbirder in reply to LittleA

But they only give a limited number of options -

Nudity or sexual activity, Harassment or bullying, Hate speech, Unauthorised sales, Violence, or Spam.

I've tried a couple and Facebook'ss Droids reject it.

LittleA
LittleA in reply to fbirder

I would say it’s spam or kind of like fake news. Maybe try and report the group leader ?

LittleA
LittleA in reply to fbirder

I did find this techwalla.com/articles/how-...

You have to go through the Facebook help center now it seems with a specific issue

fbirder
fbirder in reply to LittleA

Most excellent find!

witchcat43
witchcat43 in reply to fbirder

I wouldn’t worry too much as it looks like they’re going to be shut down by Facebook anyway due to new FB rules...they’re trying to stop all health related groups 🤔

wedgewood
wedgewood in reply to fbirder

You must take it as a compliment to be banned from such a group fbirder !

Choox
Choox in reply to fbirder

Facebook is about to shut down b12 groups.

Choox
Choox in reply to fbirder

cnbc.com/2020/09/17/faceboo...

fbirder
fbirder in reply to Choox

"Facebook announced new policies that will limit the spread of groups on its social network that focus on giving users health advice "

Not quite 'shutting them down'.

Choox
Choox in reply to fbirder

I think because they promote a prescription medicine shut down is a possibility

fbirder
fbirder in reply to Choox

Well, one of the 'idiot' groups is already worried about being shut down thanks to that new policy. That particular group banned me almost immediately. Then it let me join again.

If they're worried then they must know they push misinformation.

Here’s a very serious contra to that Facebook group’s advice:-

ods.od.nih.gov/factsheets/v...

Folic acid and vitamin B12

Large amounts of folic acid can mask the damaging effects of vitamin B12 deficiency by correcting the megaloblastic anemia caused by vitamin B12 deficiency [3,5] without correcting the neurological damage that also occurs [1,35]. Moreover, preliminary evidence suggests that high serum folate levels might not only mask vitamin B12 deficiency, but could also exacerbate the anemia and worsen the cognitive symptoms associated with vitamin B12 deficiency [6,11]. Permanent nerve damage can occur if vitamin B12 deficiency is not treated. For these reasons, folic acid intake from fortified food and supplements should not exceed 1,000 mcg daily in healthy adults [5].

To be fair to the Facebook group, that article is talking about high levels of folate supplements in the presence of a B12 deficiency.

They are talking about high levels of folate in concurrence with injecting B12. But there is some evidence that high levels of folate can be dangerous, even without a simultaneous B12 deficiency. ncbi.nlm.nih.gov/pmc/articl...

fbirder
fbirder in reply to fbirder

I thought I'd see if there was anything more on the potential dangers of high-dose folate. So I looked to see who had cited the paper I link to above.

Supplements of more than 1000 mcg a day in pregnant women associated with lower levels of cognitive development in children aged 4–5 y. academic.oup.com/ajcn/artic...

Among hypertensive adults, both low and high folate were associated with an elevated risk of dying from cardiovascular diseases compared with adults with moderate serum folate concentration. nature.com/articles/s41430-...

Higher RBC folate concentrations were significantly associated with an elevated risk of Coronary Heart Disease. sciencedirect.com/science/a...

I just posted a link to that site. It got deleted for containing misinformation about B12.

Just because it disagrees with their ideology!

Where ignorance is bliss, ‘tis folate to be wise!

wow not good! well my doctor told me take 5mg folic acid for 3 months i cant stand folic acid hurt my stomach so much i just eat loads of folic acid foods, i don't believe anything they say on that group thanks guys for head up

As others have already said lay off that folic acid. 🙂 It's crazy that someone would say you have to take that set amount given how much variation there is individual to individual. I do very poorly on folate and I don't supplement it at all.

It's not scientific but I keep a journal and I go by feel. When I start feeling predictably worse when I take a supplement I get rid of it. I don't care what my doctor says. They've been wrong many times before.

This happened to me it was folic acid

lucasussex
lucasussex in reply to Pasjc

I only took it for one days I felt so ill

I took pnly the recommended dose after that. I also found i was better with sublingual no more sickness or cramps

lucasussex
lucasussex in reply to Pasjc

You get folic acid from foods anyways

fbirder
fbirder in reply to lucasussex

But some people find it difficult to absorb folate from foods.

The folate in foods comes with several molecules of glutamate attached. These need to be removed before the folate can be absorbed. The removal is done by pancreatic protease enzymes. These enzymes need to be activated by acid from the stomach.

People with PA (and the elderly) produce little, or no, stomach acid. So their proteases aren't activated and the polyglutamates are not removed from the folates. So the folates aren't absorbed properly.

Synthetic folic acid (and synthetic methylfolate) do not come with lots of glutamate molecules attached, so they do not rely in proteases to be absorbed.

Even in normal people the bioavailability of folic acid in pills is higher than the bioavailability of folates in food. In people with an absorption problem the difference in bioavailability can be huge.

lucasussex
lucasussex in reply to fbirder

I find it hard to absorb from foods folic acid, I take taking tablets and them 5mg folic acid make me feel so unwell

Milley2
Milley2 in reply to lucasussex

Have you improved ?

How often b12 injections ?

And any difference

Do you still take folic acid ?

If d add o how much

I’m still struggling with dosage etc

I’m on dsily b12 injections

I’ve been so poorly

lucasussex
lucasussex in reply to Milley2

my last one was 24th no aww how is it going? Same here been on antibiotics for H pylori feel awful how you doing

Milley2
Milley2 in reply to lucasussex

So you don’t inject ?

I had h pylori to

Had triple meds for it

Endoscopy to last week

It’s gone now but the meds where vile

I’m still bad with the b12 thing

Do you take folic or methyl folate along side your injec

How frequent is your b12 ?

Mines monthly but I can’t last

So inject myself

I need to again felt so ill, the meds are awful metronidazole made me feel so ill to it! Meds are so vile what you take no don’t take folic

Milley2
Milley2 in reply to lucasussex

I was like you put in a 5mg folic acid

Plus loading b12 injections

I got worse

I’m still bad

So I had to resort in alternate day b12 inject mysrkf

With a 400 ug folic acid

Milley2
Milley2 in reply to lucasussex

I was told b12 needs a goid level supplant of folic acid to let the b12 injections work

As I have absorption issue from h pylori then

I assumed my folate intake is affected to so

A small daily dose

Any thoughts ?

yes you could you take folate I guess, folic acid makes me feel so ill have you Cleared H pylori now, I am taking loads probiotics and mauka honey get rid of H pylori can’t face anymore antibiotics don’t agree with me never felt so ill in my life,

You may also like...