Oral B12 as effective as injection ev... - Pernicious Anaemi...

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Oral B12 as effective as injection even in PA patients - does anyone have experience to support this?

Wwwdot profile image
87 Replies

I saw a haematologist because of my reaction to the first two B12 injections (previous post).

Haematologist wanted to put me on oral B12 because “ … the more recent evidence suggests oral B12 can overcome and bypass this block” ie the malabsorption due to PA.

I was sceptical so I have insisted on resuming B12 injections which are underway.

Has anyone any experience to support this or aware of what evidence the haematologist may be referring to?

Thank you in advance for any reply.

87 Replies
charks profile image
charks

There have been some research that show this. But you can make research show whatever you want by using findings out of context, distorting findings or rejecting or ignoring findings. In theory oral B12 should work. After all the original cure for PA was raw liver. But I believe B12D is so complex no-one can say for certainly whether oral B12 or injections are better. Every human body seems to have it's own individual 'parameters' and what works for one often doesn't work for another. And some people have reasonable levels of B12 yet still show symptoms of deficiency.

I have PA and oral b12 works for me. I am lucky I don't have to have injections. But it doesn't for a lot of others on this forum.

Wwwdot profile image
Wwwdot in reply to charks

thank you Charks I replied to pickle500 about the liver treatment please forgive me for not typing it out again.

Thank you for your insight I am sure I was right that B12 injections are what my body needs.

jennyettie profile image
jennyettie in reply to charks

Charks ... do you take subliminal tablets (or spray) or just taken by mouth? Also, how often and what strength .. if you don't mind me asking

charks profile image
charks in reply to jennyettie

As you probably know oral B12 supplements can only be absorbed passively and only about 1% of the B12 supplement will make it into the blood. The process is basically osmosis. So you need to take lots. The body can only efficiently absorb a small amount of B12 within a given period of time. In order to help B12 absorption it is recommended that you divide the dose over the course of the day.

I use a B12 protocol that I believe replicates the bodies natural way of obtaining B12 from food. I buy 5000mcg B12 liquid drops and dilute them in water and drink it throughout the day. I take about 3 droppers full (15,000). Taking B12 this way means I can customised my daily dose and that gives me more control over my situation. Only problem is that I have to pee a lot.

Wwwdot profile image
Wwwdot in reply to charks

Hi Charks - very interesting and defo worth a try. Would the drops also work in vegetable juices and keffir do you know? Thank you great info.

Bellabab profile image
Bellabab in reply to charks

With respect its not osmosis

en.wikipedia.org/wiki/Osmosis

It is passive diffusion.

msdmanuals.com/en-gb/profes...

charks profile image
charks in reply to Bellabab

Not sure why you felt the need to correct me. Does it make any difference to the advice I was giving?

Bellabab profile image
Bellabab in reply to charks

Sorry if you feel upset - its important that people do not get their science wrong. Surely your PA journey has shown you that.

Wwwdot profile image
Wwwdot in reply to Bellabab

Charks and Bellabab thank you both as you have both given me valuable information. I have accepted the information in the spirit of kindness which is how I believe it was given. Thank you both and keep up the wonderful support!

FlipperTD profile image
FlipperTD in reply to Bellabab

Scientist, not medic.

'When I use a word,' Humpty Dumpty said in rather a scornful tone, 'it means just what I choose it to mean — neither more nor less. ' 'The question is,' said Alice, 'whether you can make words mean so many different things. '

I now switch to my personal view!

Osmosis as a term is used widely, but often in error. Typically when working with a group of more experienced colleagues, your knowledge increases 'by osmosis' [No it doesn't, but I know what they mean.] Osmosis is largely about the passage of water molecules through a semi-permeable membrane. At this time of year, soaking the dried fruit for a Christmas Pudding [in my case] Earl Grey Tea overnight causes the fruit to swell as water passes through the skin of the sultana. [For those who are interested, there is a blood test which was performed in the past; the Red Cell Osmotic Fragility, and Google has details. In practice, it sorted out those who could pipette from those who couldn't. For any old lab staff reading, 'You know who you are'.]

Passive diffusion through a membrane relies on a concentration gradient. In the case of Vitamin B12, creating a high concentration of B12 in the lumen of the gut will support diffusion from the high of the lumen to the low in the bloodstream, but as always, it's more complicated than that.

Sometimes tablets work, sometimes they don't. If they don't then the needle is the answer.

helvella profile image
helvella in reply to FlipperTD

Do we know whether passive diffusion of B12 occurs in a limited and specific part of the gut - or everywhere the concentration is high enough?

I know of some who ended up requiring B12 injections who had a part of their gut missing - through surgery.

FlipperTD profile image
FlipperTD in reply to helvella

Thanks for your question but I'm afraid I can't give an answer.

I know that abdominal surgery can lead to inability to absorb B12, and we have at least one member on here who relies on injections following surgery. As for the passive diffusion, I simply don't know, but we do know that it works for some folks. My guess would be somewhere in the small intestine, but your suggestion that it's everywhere that the concentration is high enough might well be the case.

helvella profile image
helvella in reply to FlipperTD

Thank you.

There are far too many unanswered questions across medicine.

Sometimes I wish there were ways for people (patients, doctors and researchers) to list of what seem basic questions that really could do with answers.

From time to time, someone might just see a way of getting answers. Sometimes even just applying what we already know can do so.

Hedgehogs15 profile image
Hedgehogs15 in reply to FlipperTD

I really on B12 injections after major stomach surgery. I was told because I now lack the intrinsic factor oral B12 would not be adequate enough for me. Hope this helps.

Technoid profile image
Technoid in reply to helvella

I've read that passive diffusion happens at "all mucosal sites", I believe that includes everything from the mouth down to intestines. Sorry dont have the paper to hand.

helvella profile image
helvella in reply to Technoid

Thank you. If you did happen to fall across a reference, that would be great.

Technoid profile image
Technoid in reply to helvella

"In addition to the IF-mediated absorption of ingested Cbl, there is a nonspecific absorption of free or crystalline Cbl that occurs by passive diffusion at all mucosal sites. This is a relatively inefficient process by which 1–2% of the ingested amount is absorbed."

sciencedirect.com/topics/ag...

number of other interesting papers collected on this page too, I often mine these.

Lurcher-lady profile image
Lurcher-lady in reply to charks

Whilst raw liver was the only treatment years ago, I’m wondering if the ‘natural’ B12 provided by liver was absorbed any easier that that produced in a lab or even if there are any stats to say how many the liver treatment didn’t work for ☹️Surely if the problem was due to the stomach not absorbing then there was a pretty high failure rate 🤔 Just wondering, my daughter says I think too much!

Wwwdot profile image
Wwwdot in reply to Lurcher-lady

Hi Lurcher-lady. No you don’t think too much. Understanding and being inquisitive is necessary to navigate this complex medical issue. “B12 deficiency” is a convenient innocuous sounding pigeonhole but the reality of the deficit is quite a different matter. Thank you - keep the questions coming!

Pickle500 profile image
Pickle500

Is their recommendation because you were not comfortable with the effects of the injections?

Vitamin deficiencies often impose a counter-intuitive paradoxical reaction. B1 (thiamine) is the same - many people get a worsening of symptoms before they get improvements.

Because medics do not study nutrition, gut health or vitamins in any detail - if at all - they do not know this information. So they are as in the dark as the rest of us.

But people on this forum have 'been there and done it' and we can say that injections are a more guaranteed route of administration to heal, longer term. Sure, oral may 'raise levels' but the mode of delivery is not as effective as injections which give you 100% of b12 into your blood. The stats on previous posts here suggest oral is 1% vs 100%.

So I know which I would choose.

Wwwdot profile image
Wwwdot in reply to Pickle500

thank you Pickle500 - the suggestion was because the symptoms got much worse. However I was frightened because I was not warned and the GP and haematologist didn’t expect the symptoms to worsen. But after having read experiences on this forum I realised B12 injections were necessary.

I eat liver regularly and a wide range of meat and dairy so I could not be B12 deficient due to diet

It is true about liver being used to treat PA but only once it had been eaten and then regurgitated by someone whose gut was working The PA patients were then able to access this B12 Asif had the intrinsic factor protein bound to it - that’s my lay understanding!

Thank you I suspected that oral B12 was not the solution for me.

Pickle500 profile image
Pickle500 in reply to Wwwdot

Yes indeed, soldier on with the injections. Its a dark journey Im afraid, its horrible. But you WILL be okay at the end and itll make you stronger.

Eating meat can only help your system. Not liver every day! But high B12 foods may still help the system function better.

Wwwdot profile image
Wwwdot in reply to Pickle500

thank you. It’s hard because hubby and kids don’t get it although they try - I am on injection 4 of 6 and feel lousy. I am going off meat and wanting to eat less and less of it as it makes me feel uncomfortable- this has been happening for over a year. Sadly I have also developed an intolerant to some fish and shellfish which was my preferred protein. I think I may have to see a nutritionist and completely rethink my meal menus. Thank you for your encouragement and kind words.

Pickle500 profile image
Pickle500 in reply to Wwwdot

I understand. I felt completely alone with my deficiencies since I couldn't get a diagnosis. I thought it was all in my head and everyone was telling me that too. Symptoms were so subtle and insidious that it kind of tipped me into the twilight zone.

Self care is the key. I'm certain my problems were gut related, and I was deeply stressed and hadn't slept well for years. All of these things wreck the gut, aswell as diet. Keep the faith that you'll get better and focus on self care - no processed foods. Only fresh, clean, organic if you can. Kefir and other probiotics can help the gut too.

It will get better in time!

Wwwdot profile image
Wwwdot in reply to Pickle500

thank you. I have definitely neglected myself to look after others during the last couple of years and been under unbearable levels of stress (and traumatic bereavement) which I have “coped” with and soldiered on. Now I know why I have found it so hard, I do feel there is light at the end of a very lonely long tunnel! Thank you again

Pickle500 profile image
Pickle500 in reply to Wwwdot

Sorry to hear that. Stress can impact the gut, and other body parts, in significant ways. I think it's all linked to the Vagus Nerve, which connects the brain and gut. How we manage stress is key to maintaining the vagus nerve, and if our usual coping mechanisms aren't there, it leaves us vulnerable. It doesn't seem fair that life stresses can lead to health problems, but we are only human.

Time is the healer of almost everything, including B12 it will be a long road to get back. Hope your family can help. In the end, my wife did get it. Luckily she could keep the house afloat for a year. All the best

jennyettie profile image
jennyettie in reply to Wwwdot

Hang in there. Often symptoms get worse before they start improving. It's natural. Also, look after your gut. Probiotics help but also most of us have LOW stomach acid (not high, as most people and doctors believe). The "acid" you think is the problem when you lie down is because whatever is in the stomach comes up and burns the esophagus because the flap (I forget what it's called at the moment) doesn't close if there isn't enough acid. Sounds crazy, but a bit of research will show you. It's a mistake to take a PPI to lower stomach acid if it is already low.

Wwwdot profile image
Wwwdot in reply to jennyettie

hi Jennyettie I have low stomach acid do eating keffir and preserved vegetables and baking kimbucha too to help raise it - hope I am in the right track with that approach. Thank you for the info and support.

jennyettie profile image
jennyettie in reply to Wwwdot

Yes, definitely fermented vegetables, keffir, kombucha, apple cider vinegar, etc. will help raise acid. I don't know what baking kimbucha is. I take HCL and pepsin tablets if I've had a heavy protein meal too.

charks profile image
charks in reply to Wwwdot

That's disgusting about the liver being regurgitated. Where did you read about that? Everything I read said the liver was fresh and raw or very lightly cooked. Raw liver is bad enough!!!!

Wwwdot profile image
Wwwdot in reply to charks

it’s in Martin Hooper’s book. “What you need to know about Pernicious Anaemia & Vitamin B12 deficiency” page 25 which says:

“Intrinsic Factor was first identified, or explained, in the late 1920s by a Doctor Castle, who used to treat his Pernicious Anaemia patients by regurgitating raw hamburgers [sorry I was mistaken it’s not liver!] and feeding these to them …”

Different meat but same principle!

Technoid profile image
Technoid in reply to Wwwdot

Worsening symptoms after injections was something I experienced too (and many others). I think its characteristic of severe and prolonged deficiencies, since milder cases can see improvement right from the very start of treatment. Perhaps contemporaneously occuring nutrient deficiencies too? hard to say.

It took several months for me to feel things were turning a corner.

There are papers claiming that oral works just as well as injections. It can work for some but not all, that evidence is clear from many on the forum who have tried to move off injections to oral but found that symptoms return. I think oral can work in cases of dietary deficiency where the deficiency is not very severe. But if the deficiency is severe and prolonged (i dont think a serum B12 can measure this either) I think the case for injections is very strong, its faster to bring up levels and gets way more B12 into the system quickly which can be very important for speed of healing neurological damage. After 5-6 months, if absorption problems were healed (not in the case of PA but some other cause), I could see oral working for some. Some have found oral to improve symptoms even better than injections which I admit I find hard to understand, perhaps the B12 form?

Long way of saying one size does not fit all and the best treatment is always the one that is most effective at reducing symptoms, whether its oral or injection.

Wwwdot profile image
Wwwdot in reply to Technoid

thank you, I am only in week 6 of knowing I have PA and all your support and feedback is helping up this steep and unexpected learning curve. I just thought it was grief and old age - now although I am going to have to overcome my intense dislike of needles I can see a brighter path. Thank you again.

Nackapan profile image
Nackapan in reply to Technoid

Yes my sister recovered using irsl b12 only.Her deficiency was dietary.

A long term strict vegetarian.

Has had colitis.

Kept her well for 40 yesrs .

The menopause like me changed things .

She simply could not get enough from her diet .

High dose oral b12 daiky works for her.

Her symptoms were far less severe than mine.

The 'penny dropped ' when she saw me collapse and very ill.

Hormonal changes are a known risk factor .

Why ??

Her level dropped to 114(200-900l)with gradual symptons as wd all get .

The tipping point for us is obviously below thus number as in my case.

I've never been s big meat eater but it's included .

Homegrown veg.

So a very good diet .

I put too many symptoms early on down to the menopause and was told this!!!

Also aging !!

I knew something was wrong .

But instant about PA .

Asked for iron to be tested after several falls ect .

Had been to the go for 7 years.

No alarm bells .

When I went 3 times in succession with fatigue asking for blood tests .

As kept falling over abd vision bad .

Headaches ect.

Still angry at tines

A simple b12 wasn't tested.

My sisters was as a vegetarian my theory that is often the case so caught earlier.

First ever b12 test I was 57 .

2 years into the menopause. I rest my case .

I trued high dose oral b12 but too little too late I think 🤔

FlipperTD profile image
FlipperTD in reply to Wwwdot

Scientist, not medic, and amateur historian.

You're mixing two stories here. The Liver treatment was instituted by Minot, Whipple and Murphy, and resulted in a Nobel Prize. It worked. At the time, untreated, PA would 'see you off' in a couple of years.

William Bosworth Castle invented the 'regurgitated minced beef' treatment which also worked. This was after the tried and tested 'Raw Liver' [well, described as 'lightly cooked'] treatment was shown to work miracles. Castle's treatment established that normal gastric juice contained the 'Intrinsic Factor' which combined with the 'Extrinsic Factor' that we now know as B12. It's an efficient process because the actual amount of B12 involved was very small.

The modern approach to oral therapy using B12 tablets requires comparatively massive doses. [Like 1 milligram!] for effect. It doesn't work for everyone, but potentially works for more than we'd expect. The story is fascinating.

There's no doubt that injections work. Other treatments that have been shown to work sometimes have included 'dried fish tapeworm', and the less said about that one, the better.

You are among friends in this group, and they have a large amount of experience of what works for them.

Good luck.

Wwwdot profile image
Wwwdot in reply to FlipperTD

Flipper TD thanks you I have read so much in such a short time it’s not always recalled accurately so thank you for the additional details. Thank you again.

FlipperTD profile image
FlipperTD in reply to Wwwdot

😀👍

Justme20212954 profile image
Justme20212954 in reply to FlipperTD

Thank you for that, Flipper T D. I take a 1 mg sublingual daily for PA caused by autoimmune atrophic gastritis. Luckily, for the most part, it works for me. Injections made me terribly sick. Probiotics in pill form also caused negative side effects but natural probiotics like fermented sauerkraut and low fat sugar free Greek yogurt have helped tremendously with my stomach issues.

Wwwdot profile image
Wwwdot in reply to Justme20212954

thank you Justme20212954 - they are becoming my favourite foods too! Thank you for the information.

FlipperTD profile image
FlipperTD in reply to Justme20212954

I'm pleased you have some answers, and thereby dodge the grim reaper. Keep doing it. Churchill signed off his letters with KBO. I support that.

Justme20212954 profile image
Justme20212954 in reply to FlipperTD

Remember, l'm from Ohio... Had to look up KBO.. 😊

Wwwdot profile image
Wwwdot in reply to Justme20212954

so did I! 😂

USA78 profile image
USA78 in reply to Justme20212954

Have you been able to get a prescription for injections in the US? I want to try injections, but my gastroenterologist and primary just tell me to take the sublingual oral B12. (I rec'd a few shots when first DX'd.) I am up to the low end of normal range, which they think is fine. But now I'm getting numbness in my feet. It seems like outside the US, injections are standard.

Wwwdot profile image
Wwwdot in reply to USA78

Hi USA78 🇺🇸

I am in the UK. 🇬🇧I paid for a private consultation to learn how to self inject and who provides me with support. GP is supportive but hesitant (due to lack of knowledge) and so I diplomatically educate them but walk my own path. 🤞

I have ordered injectable B12 from Germany🇩🇪 as my backup but also get the privately in the UK as well as from my GP when I can.

I was very low in B12 when I was diagnosed and if I don’t inject every other day I start to go backwards with symptoms returning.

I am no expert but what I know is that if you have neurological symptoms, and numbness is a neurological symptom, your body needs high levels of B12 quickly to start recovery before permanent damage is done. B12 deficiency treatment should be guided by symptoms not blood tests

If I was you, I would continue with the sublingual B12 as it can only do good albeit very slowly and seek a way to get B12 injections. Best of luck.

Justme20212954 profile image
Justme20212954 in reply to USA78

Good morning.. when I was first diagnosed I was given a shot once a month. I only did 2 because they made me so sick. I then went on B12 sublinguals and while it took a while, they began to work. I take 1 mg daily...which is a fairly high dose. I buy them over the counter or on Amazon. If I were to ask to have the shots again my doctor would readily provide them at the medical facility or give me a prescription to do it at home. In fact, we will have that conversation periodically when I go in for checkups. But honestly the shots made me so sick I don't think I ever would consider it again.

Wwwdot profile image
Wwwdot in reply to Justme20212954

Hi Justme

Sounds like you had a rough time. I was really unwell too after my first 6 shots but I understand thats what’s called reversing symptoms when the nerves are kick started after a long term deficiency. Glad you found an alternative path.

Best of luck.

USA78 profile image
USA78 in reply to Justme20212954

Many thanks Justme and Wwwdot. I've been hesitant to go my own way with injectibles, but now my WBC, RBC and Platelets are all low (plus some numbness) and hemoglobin has dropped to low end of US range. I've been taking 3000mg sublingual daily for the last couple of weeks, but think I will go ahead and start some shots whether my dr write the script or I need to seek elsewhere. Annoying that I have to do that, would prefer to do it under care of Dr.

Wwwdot profile image
Wwwdot in reply to USA78

Dear USA78

It’s important to take control of your treatment and as you cannot overdose it makes sense to reduce the risk of permanent nerve damage by self injecting.

At least if more people did this and fed back to GPS it would help the tide of change.

I was really stressed relying on a GP to “allow” me B12 now I take it when I need it and the relief and reduction in stress is unbelievable. M

Best of luck.

Bellabab profile image
Bellabab in reply to Wwwdot

Sorry it wasn't regurgitated liver it was very large quantities = several pounds usually raw or very lightly cooked.

Wwwdot profile image
Wwwdot in reply to Bellabab

I love liver but not too sure in this quantity. Also I think of you had this quantity long term then there would be a risk of vitamin A toxicity? I could be wrong as digging deep into foggy memory!! Fog lights on! Thank you.

Technoid profile image
Technoid in reply to Wwwdot

Yes, eating substantial amounts of liver daily over a long period of time (years) could lead to Vitamin A toxicity. I think I've seen recommendations that are usually to limit consumption to once a week.

FlipperTD profile image
FlipperTD in reply to Wwwdot

I seem to recall that Polar Bear liver is particularly rich in Vitamin A. Fortunately, in Yorkshire, we don't have those wandering round, although we do have them in captivity... There's something to be said for tablets or injections, or both.

Sleepybunny profile image
Sleepybunny

"I have insisted on resuming B12 injections which are underway."

Good for you.

I'd ask the neurologist what evidence they are referring to.

Note on oral treatment - B12 Institute (Netherlands)

b12-institute.nl/caution-no...

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Oral B12 treatment is mentioned in above article.

Search online for "Cochrane review Oral B12" and read the report's conclusions.

PAS news item on Oral Tablets from a few years ago.

pernicious-anaemia-society....

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not a health professional.

Wwwdot profile image
Wwwdot

Sleepybunny. Your help and info has been invaluable in climbing this health knowledge mountain. I am starting to fight my corner with some confidence. Thank you.

Sleepybunny profile image
Sleepybunny in reply to Wwwdot

Hi again,

Some UK forum members resort to treating themselves as a last resort if NHS treatment is not enough for them.

I had to when NHS refused to treat me. I've since managed to get some B12 injections from NHS but it's not enough and I self inject.

I'd prefer not to self inject but there's just no way I can get what I need from NHS.

I've tried high dose oral B12 tablets which help a bit but are not really effective for me and getting extra injections from a private GP or beauty salon is too expensive.

Petition

There is currently a petition to get injectable B12 available over the counter in UK

change.org/p/dr-june-raine-...

Worth reading the petition comments as people explain why they are signing it.

Tracey Witty of B12 Info.com (formerly B12 Deficiency Info) has been campaigning on this issue for 8 years

b12deficiency.info/eight-lo...

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Article below discusses reasons why some patients choose to self inject B12.

Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey

Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti

British Journal of General Practice 2022; 72 (725): e891-e898. DOI: doi.org/10.3399/BJGP.2021.0711

Wwwdot profile image
Wwwdot in reply to Sleepybunny

thank you I will read this.

Cherylclaire profile image
CherylclaireForum Support in reply to Sleepybunny

Very interesting survey.

Oddly, my original Oral medicine consultant, one I hadn't seen for a few years, seems to have changed his mind completely about my B12 self-injection regime.

At first, he was very concerned that, with over measurable amount in my blood now, there was no way to tell if this was accumulating. He wanted me to gradually reduce my intake and asked, in a report to my GP, for them to help me by close monitoring of my condition.

This did not happen. I didn't push for it.

This time, some three years later, he said that, in his current opinion, I would not be able to function properly without that level of B12, and that tablets would not work !

I was so surprised that I forgot to ask whether he would be putting this into his next report to my GP.

A complete reversal of position is quite rare. Wonder what prompted that ?

Wwwdot profile image
Wwwdot in reply to Cherylclaire

hi Cherylclair I would like to think the change of opinion is due to education and improved awareness of the condition. If there is a positive out of this diagnosis it is that I will do my best to ensure my GP practice are given the opportunity via my condition to learn. At present their only guidance are the national guidelines ( I think there’s a proper name but can’t recall it). Thank you

Cherylclaire profile image
CherylclaireForum Support in reply to Wwwdot

NICE guidelines (the National Institute for health and Care Excellence) - who are currently reviewing their guidelines on B12 deficiency. I have just replied to someone else about this.

The new guidelines are due out in November next year. Martyn Hooper as founder of the Pernicious Anaemia society is representing the PAS on the stakeholders panel, the B12 Society also involved, so hoping that this will improve understanding further.

Sleepybunny profile image
Sleepybunny in reply to Wwwdot

Maybe when you have enough energy you could join the PPG (Patient Participation Group) for your surgery and speak up for people with B12 deficiency.

Wwwdot profile image
Wwwdot in reply to Sleepybunny

I am definitely going to self inject. I am booked in for training on 7 Dec - I am lucky to have health insurance via my work - I am trying to get my GP to “buy in” to the benefits to the already overloaded practice if they supply the B12 and I self inject. Fingers crossed! This is a discussion happening next week. I am also having a full range of antibody test (whatever test comprises) so we should at least narrow down to a firmer diagnosis of cause. Meanwhile I am just trying to read as much as I can with a cracking headache, ringing in my ears and constantly wanting to doze off! Thank you again for taking the time to respond.

Sleepybunny profile image
Sleepybunny in reply to Wwwdot

"I am also having a full range of antibody test"

Worth finding out what tests they are doing if possible as this should give clues as to what they suspect you have.

I'm assuming they are testing you for PA which would most likely be an

Intrinsic Factor Antibody test (IFA or IFAb) and possibly

Parietal Cell Antibody (PCA)

Would be good if they also did a gastrin test.

IFA test can give a false positive result sometimes if blood is taken close to a B12 injection. Labs might suggest leaving at least 48 hours and up to two weeks after a B12 injection before taking blood for IFA test.

Testing for PA

pernicious-anaemia-society....

Gastrin test

labtestsonline.org.uk/tests...

A negative result in IFA test does not rule out a PA diagnosis unfortunately some GPs may be unaware of this. Does your GP know that it's possible to have Antibody Negative PA?

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

It's possible they might be testing you for coeliac disease.

I suggest you read the NICE guidelines on coeliac disease and make sure they follow the recommended process.

nice.org.uk/guidance/ng20

If testing for coeliac disease, I would expect them to test tTG IgA (a test for antibodies to gluten) and Total IgA (checks for IgA deficiency).

If they are testing you for coeliac then they should according to NICE guidelines have asked you to eat plenty of gluten in more than one meal per day for several weeks prior to testing.

tTG IGA can be negative in a person with coeliac disease if

1) they have IgA deficiency

2) they were not eating enough gluten before blood test

Possibly thyroid tests as well.

thyroiduk.org/thyroid-funct...

Maybe some other auto immune screening tests eg ANA test

Peder1962 profile image
Peder1962

I’ve read professor Ebba Nexö material recently - and she is known as one of the best b12 experts in the world. She does not recommend b12 tabletts for PA! The most b12 tabletts is made of cyankobolamin which requires intrinsic factor (which Pa patient dont have).

She also publiced a recent pilot studie on effectiveness of b12 tabletts and on common patients (not PA - much worse figures) about 73% could work and on 27 did not work!

Wwwdot profile image
Wwwdot

Hi Peder1962 (great year by the way 😉)

Thank you for the reference I will look her up because I need evidence to share with the GP that my decision not to follow the advice of te Haematologist was justified snd this is a fantastic starting point. Thank you.

Beccy_123 profile image
Beccy_123

10 years as a clean meat eater with abundant B12 in the diet, then 6 years of oral methylcobalamin and adenosylcabalamin did not support my B12 deficiency (non-autoimmune functional B12 deficiency/PA) and injections were like a miracle for me. From what I understand, the form of B12 used in the oral supplementation might provide different outcomes. I would like to see the evidence? I only have my own personal experience to share. The very best evidence is your own experience - your cells, your body 🥰

Wwwdot profile image
Wwwdot in reply to Beccy_123

thank you. Again great insight.

Gambit62 profile image
Gambit62Administrator

Personally I find oral effective in maintaining levels though I do take about 9mcg a day in total.

The thing about oral is that it manifestly doesn't work for everyone - there haven't been many large scale studies but there are some literature reviews that correlate success for different absorption problems and those that look at PA seem to show around 30% don't respond well. There was a large scale study in Canada that showed that something like 2/3 of patients preferred high dose oral but that wasn't specifically looking at PA - though given the problems getting a definitive diagnosis for PA these days would be a difficult sample to select.

Before injectable B12 was available (but after the part B12 plays in PA was identified) the only treatments available were oral - liquidised liver. Passive absorption is a real thing.

It would be nice to see more research around why passive absorption doesn't work for significant numbers of people rather than a mistaken assumption that it will work for everyone.

Wwwdot profile image
Wwwdot in reply to Gambit62

interesting and good to know for last resort but I think it’s risky when B12 levels are low and one eats a varied animal based diet and have long term and neurological symptoms as I do. My instinct is to injections even though I absolutely hate needles. Great insight. Thank you.

Sleepybunny profile image
Sleepybunny in reply to Gambit62

Some of the articles I've read suggest that oral B12 can raise b12 levels but my concern is that this is not the same as improving symptoms.

I'd like to see more large scale studies comparing treatment with oral B12 and B12 injections which look at both blood levels of B12 and symptoms.

Wwwdot profile image
Wwwdot in reply to Sleepybunny

agree. I don’t think I would be in a good place after three months of oral B12 since my starting point is already quite low.

Sleepybunny profile image
Sleepybunny

Hi Wwwdot

Hope you don't mind me including this info in the thread for any UK forum members who are not sure about being put on oral treatment rather than injections.

My understanding is that GPs cannot impose a major change in treatment unless a patient has given "informed consent " for the change.

As I understand it (I'm not a scientist or medical professional) this means that GPs should discuss both pros and cons of changing to oral treatment with patient, make sure they understand the issues and get patient's agreement before they change treatment from B12 injections to oral B12 tablets.

Of course doctors may argue that changing from B12 injections to oral B12 tablets is not a major treatment change.

Patients who are unhappy with a change to oral treatment, might want to point out in letter to/conversations with GP that informed consent for the change in treatment has not been given (assuming consent has not been given previously).

Keep copies of any letters on this issue as might be useful in case there is a need for formal complaint in future.

If a change to oral treatment is part of a study the GP surgery or ICB/Health Board is taking part in, has this study got "ethical approval".

Patients might want to ask if they are part of a study and if they are, they might want to ask further questions about whether the study has "ethical approval" from an ethics committee.

Most studies involving patients need ethical approval.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

Link to a thread about Patient Safety I started. It has lots of useful links for UK forum members who are unhappy with their health experiences.

healthunlocked.com/pasoc/po...

Wwwdot profile image
Wwwdot in reply to Sleepybunny

A really good point especially as most discussions are verbal and only recorded by GP or specialist. Thank you again.

Sleepybunny profile image
Sleepybunny in reply to Wwwdot

Might be worth asking to record appointments.

Doctors are likely to be reluctant but if you have fatigue, brainfog, cognitive problems, memory issues you would have a good case to do so on disability grounds.

I suggest any request to record an appointment is put in writing to doctor well before appointment along with reasons why you need to record eg memory problems etc.

BMA article about recording appointments

bma.org.uk/advice-and-suppo...

Wwwdot profile image
Wwwdot in reply to Sleepybunny

I think this is good advice for many medical appointments- jargon, fear and unfamiliar topics do not lend themselves to accurate recollection. I will do that as to date I have made contemporaneous notes which can be a challenge but force me to concentrate which can be exhausting!

Gen89 profile image
Gen89

I have read that some b12 is absorbed from the gut into the blood stream by diffusion so even if you have no intrinsic factor some b12 can be absorbed. Have you had a positive anti intrinsic factor antibody test so know your cause of low b12 is PA rather than another cause eg taking proton pump inhibitors so low stomach acid, low dietary intake, coeliac, previous gut surgery, decreased stomach acid due to being elderly etc ? If it’s another cause then b12 tablets could potentially help depending on the cause.

Wwwdot profile image
Wwwdot in reply to Gen89

Hi Gen89

The other causal factors have been ruled out as not applicable or unlikely. The fact I am an active outdoor person and otherwise healthy middle aged lady with a good animal based and balanced diet with neurological symptoms has caused my GP to raise the alarm bells. Since on B12 injections 5th today I am on an upward trend albeit a few back steps after each jab and unwanted side effects such as a persistent headache, ringing in my ears and disturbed sleep. My test for anti intrinsic factor was negative but my GP is basking treatment on symptoms so GP is pro injections - just the haematologist who was not. Thank you for wonderful feedback.

Gen89 profile image
Gen89 in reply to Wwwdot

Hope all goes well

tomdickharry profile image
tomdickharry

I went for my 8-weekly injection in March 2020 only to be told

they were stopped. No reason given and subsequent requests

were ignored but was given a link to dietary advice.

I then tried tablets, capsules, and skin patches but my health

rapidly deteriorated to the extent that I could barely

remember my own name. I was falling over, dropping things, had

excruciating tinnitus, and more.

So no, oral supplements did not work for me.

Then I got some oral spray and in desperation kept increasing

the dose until I got to 25mg a day. That’s 25000 micrograms

and at that point got a breakthrough into my urine. So despite

the sickly taste and the unwelcome effect of the sorbitol

sweetener on my bowels, I was prepared to continue with it.

However, thanks to this site I managed to import some

ampoules from Germany and syringes from UK and have been

injecting myself ever since.

Wwwdot profile image
Wwwdot

oh my goodness what a horrible and terrifying experience! So glad you have it under control now but disappointing that you didn’t receive more support and understanding from the medical fraternity. Any chance you can switch GP? All the very best and thank you for sharing.

WiscGuy profile image
WiscGuy

There have been a number of generally poor quality studies on oral B12 that have confused many doctors. As Sleepybunny mentioned, the article "The Many Faces of Cobalamin (Vitamin B12) Deficiency" includes a section critiquing the argument that oral B12 treatment is as effective as injections. This review is found in the article in the section with the heading, "How should treatment be given?" The article is written by researchers and appears in a peer-reviewed medical journal, and so is an effective way of presenting information to doctors. The article is available at this link: ncbi.nlm.nih.gov/pmc/articl...

Wwwdot profile image
Wwwdot in reply to WiscGuy

thank you wiscGuy I will add to my reading list.

mcg-woo profile image
mcg-woo

My experience is the opposite. I discontinued b12 injections and took high doses of sublingual methyl for three months and became the sickest I have ever been in my life. It has taken years to recover because of not having frequent enough injections. About two years of weekly injections seems to have finally put me in full remission of deficiency symptoms. There are people who are unable to absorb b12 through the gut. It’s that simple. I mean really—do they think all these PA patients would resort to self injections if they could absorb b12 through the gut? Absurd.

Wwwdot profile image
Wwwdot in reply to mcg-woo

True but logic rarely prevails! I keep asking the question “ why do you think oral B12 will work when eating meat and dairy products does not?” Its at this point that the back off oral medication onto injections again. Basically I think my body needs the B12 but cannot cope with being carpet bombed. I have noticed that 2 x 1ml over 48 hours is my body’s limit. It then rebels a bit before settling down! Thank you for your insight .

mcg-woo profile image
mcg-woo

Good point. I never had loading injections so I can’t offer insight into that experience. The most frequent injections that I ever had was weekly and it was not easy to tolerate them in the beginning but I had been so sick that I figured what choice do I have but to keep going?

Eventually, tolerability improved and today regular weekly injections just make me feel like a normal person who is able to function like someone without PA. I will always have the fantasy of absorbing b12 normally but that is not the hand I’ve been dealt and i am forever grateful to the physician who discovered my deficiency. Best of luck to you! I hope that you are able to find something that works for you!

Wwwdot profile image
Wwwdot

with the help of all the wonderful people in this forum I am confident of that. Just not feeling scared any more is wonderful! THANK YOU ALL AGAIN!

B12life profile image
B12life

if you eat a decent amount of meat and are deficient then ask him why you are deficient while eating more than the daily recommended amount of meat and why oral supplements will work. And no! They NEVER worked for me. I don’t know why I stopped absorbing B12. One theory is my gallbladder was taken out. However I eat and always have eaten a lot of meat and was found severely deficient. Since then (2 years ago). Oral has never had oral work since then and I tried.

Take this doc “ the many faces of cobalomin” article and if they don’t give you shots go somewhere else. PAS I believe has a letter you can use to give to the doctor.

mcpiqojournal.org/article/S...

I highlighted the table on page 2 and some key facts stated throughout the article that backed the need for Injections and the fact that permanent neurological damage would result without them.

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