Oral b12 or injections: Diagnosed with... - Pernicious Anaemi...

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Oral b12 or injections

Mag999 profile image
Mag999

Diagnosed with low b12(130) had loading injections, not heard from gp since. I started self injecting hydroxycobalamin but continued feeling rubbish and have been waiting for neuro results due to weakness strange sensations etc . I don’t think anything has come up in those investigations so am left with b12 supplementation as the treatment. I had to stop injections to get bloods retested, including full thyroid panel so have been 1 month without. Symptoms ramping up in last fortnight. I tested negative for the intrinsic factor so wondered if I could try oral supplementation of 1000mcg methylcobalamin for a while and test out whether I can absorb it. I don’t mind injecting but if I don’t need it I would be far happier taking a tablet a day!

34 Replies

The only way to tell if oral B12 works for you is to try it.

Because you only absorb about 10 mcg of an oral dose I would recommend having three or four tablets during the day (breakfast, lunch, dinner, bedtime) as the best way to boost the amount that may be getting into your blood.

However, if your deficiency isn't dietary then it is likely that you cannot absorb oral B12.

Mag999 profile image
Mag999 in reply to fbirder

Is that 3-4 doses daily of the 1000 mcg? Or if I only absorb 10mcg each time use a lower dose preparation? Thanks

fbirder profile image
fbirder in reply to Mag999

Yes, a lower dose would be fine. But it's not easy to find pills that contain less than 1000 mcg. If it were me I would be fine with 3 x 50 mcg but I wouldn't bust a gut looking when you can get 1000 mcg for not a lot of money.

Nackapan profile image
Nackapan in reply to fbirder

I got 50 mcg and 100mcg at my supermarket pharmacy(morrisons) B12 and it's cheap. Also online you can get all sorts . I've had lamberts 100mcg

Wild nutrition 500mcg.

Just vitamins 1000 sublingual

A spray....

Those days have gone .

German b12 ampoules and my prescription ones only now.

fbirder profile image
fbirder in reply to Nackapan

Ah! I restricted my searching to Amazon.

Nackapan profile image
Nackapan in reply to fbirder

There are other outlets available lol

I felt very ill for a long time when starting injections. It can take a while to have any benefits. You probably have been low for some time even a few years declining levels. So will need alot of healing.

We are led to believe by our doctors that once loaded we will be fine. I truly think they believe this.

I hope the tablets work for you.

I tried them in different forms and was prescribed 50mcg that I took 4x a day. I bought them. Also 100mcg and sublinguals methylcobalamin and cynocobalamin. Synthetic 1000 mcg'wild nutrition ' 500 mcb. I think all went down the pan.

Even though I was told my deficiency is dietary (it isnt)

I tried as like everyone would rather a tablet. I was however nog prepared to totally stop injections. I was only trying to get to monthly. Only ever Got to 3 weekly a fes times.

Taking oral b12 was only in an attempt to space out injections. It seems to worm fof some.

Didnt work did me.

If you are not a vegan could well be an absorbtion issue.

Do post and say if you manage on tablets.

🤞hope you improve whatever.

.

Mag999 profile image
Mag999 in reply to Nackapan

I’m not totally vegan but I can’t eat eggs, don’t eat meat so would only get my b12 from cheese and yoghurt so probably could be dietary hence trying the oral route. Will try for next few weeks unless I keep going downhill, I have injections available so can switch. Just frustrated as no doctors want to know now I don’t have anything interesting 🙄

fbirder profile image
fbirder in reply to Mag999

Ah! Almost certainly dietary.

People say that eggs and dairy are a good source of B12. That's half right - they're a source, but not a good source. You'd need to eat a 2-egg cheese omelette, washed down with a glass of milk each and every day just to get your recommended daily amount of B12.

You'd need to consume 875 mL of yoghurt or 300 g of cheddar to get your RDA.

Mag999 profile image
Mag999 in reply to fbirder

Wow, I like cheese but not that much! My gp said I should be on injections for life despite negative if . She never asked about my diet. Presumably people become deficient even if they are omnivores? If you don’t eat lots of meat? I have thought about trying to eat meat but I just don’t like it on top of my animal rights views

fbirder profile image
fbirder in reply to Mag999

Any doctor worth their salt should know if their patients are vegetarian or vegan. If they are they should be advised to take B12 supplements.

The good news is that a month or three of taking the pills three times a day should get your levels way up. If your symptoms abate then you can drop down to a normal multivitamin that only has 5 mcg in it.

Mag999 profile image
Mag999 in reply to fbirder

Just to say I have always known about b12 deficiency in vegetarians and vegans having been one for 40 years but erratic supplementation must have failed me!

Nackapan profile image
Nackapan in reply to Mag999

Yes tablets should be fine but you need them daily. As you say tour diet kept you well up to now. Something has changed. My friend was vegan had some injections now takes daily b12 and has a more mixed diet. Hes fine now.

Another had been a vegetarian for 3o + years and b12 been fine but when she hit her 5o's must absorb less as got very low 114 pg/l private test . (Menopauses a known risk factor) Then took oral b12 daily and eventually a few symptoms (not many considering ..low mood aching arms tingling ect( went . She remains a strict vegetarian but had a daily b12 tablets without fail after seeing what happened to me. So it is possible.

Others despite b12 tablets and whatever they eat if theve stopped absorbing will need injections for life.

So i hope yoh ard the former and will get well soon on b12 tablets.

Espeegee profile image
Espeegee in reply to fbirder

If the poster has tested negative for IF doesn't that mean she can't absorb it? I know the test isn't 100% accurate etc but if theirs was then no amount of oral B12 will work is my understanding?

fbirder profile image
fbirder in reply to Espeegee

A positive test for IF antibodies would mean that she cannot absorb B12.

Espeegee profile image
Espeegee in reply to Mag999

Here's a list of foods, there are a couple of plant based suggestions that might be useful. healthline.com/nutrition/vi...

I was vegetarian for about 20 years. I was always tired but dismissed by doctors. I eventually reverted to eating meat about 10 years ago, although I gather I still don’t eat much by most people’s standards.

I have been self injecting mostly every other day for about a month and a half. In the last couple of weeks I have been doing better. Took a couple of days off injecting (which I couldn’t do before) and symptoms are less severe on non injecting days (numbness in little finger and toes in one side).

I take tablets in between on non injecting days. One in the morning and one in the evening. They seem to maintain more than repair nerve damage. I was taking them for a good couple of months Before I was self injecting without improvement in numbness and although I would feel tingling they just weren’t doing enough.

So my point is that I think it’s possible to be dietary deficient and still need injections. My own personal theory is now leaning towards SIBO. Vegetarians end up eating a lot of carbs and I had an eating disorder so used to eat a lot of sugar and carbs. If you have any stomach issues you may not be digesting well enough to get the b12 even if you could absorb it in theory.

That’s very helpful, than you. I have had stomach problems, excess acid, pain etc and wondered about SIBO as it seems to have worsened as I got older. I am a bit carb happy and need to look at my diet as I certainly don’t digest some foods that used to be fine like bananas avocados and other seemingly healthy foods. I do get nervous system symptoms so will just try out oral only for as long as I can manage but if they get worse I will inject

You might find you need to inject to improve symptoms but obviously your call.

fbirder profile image
fbirder in reply to Mag999

Are unripe bananas better than ripe ones? If so, you could be having a problem with the oligofructans that increase in bananas as they ripen. I know I do.

Avocados can be quite high in sorbitol, which is a polyol.

Oligofructans are one of the 'O's in FODMAPs and sorbitol is one of the 'P's in FODMAPs. These are a group of carbohydrates that some people have difficulty digesting. Instead they pass into the large intestine, where bacteria have a feast - fermenting them (the 'F' in FODMAPs). The result can be gas, bloating, diarrhoea and constipation.

Fructans are also common in most breads, but not in gluten-free bread. So people assume it's gluten that causes the problem when they go gluten free. Often it's not gluten but FODMAPs. newscientist.com/article/21...

Hello! Lots of good advice here. B12 injections can be very hard to tolerate if you suffer from severe symptoms and full resolution of symptoms affecting the brain can take up to a year. I didn’t have loading doses and I continued to improve over two years. I think this may have been quicker had I received loading doses. After two monthly injections and follow up testing, I stopped injections and supplemented with 2,000mcg -5000 mcg of sublingual methyl. It took only three months for me to be severely symptomatic and I believe that I was anemic based on my symptoms—severe dizziness. I went back on injections and had a hard time tolerating them but saw initial improvement in three days. I tested negative for IF antibodies, but since most cases are caused by PA and my diagnosis was at a younger age—43, it is believed that I have PA. I did continue sublingual B12 with injections for a while but saw no benefit-waste of time and money. I had been injecting twice monthly but am back on weekly hydroxo for a while and then I will try twice monthly once I have full resolution of symptoms. There is no benefit to follow up testing except my GP did check my MMA after treatment—I think to make sure my body was properly utilizing the B12 and it was good—low numbers. Be patient and good luck to you. I would love to be able to take sublingual B12, but the reality is that I can’t. No one likes self-injecting, but for some it’s the only way to remain healthy and symptom-free. If you do start experiencing symptoms, don’t wait too long to get back on injections. The sicker you get, the more difficult treatment and recovery will be for you.

Cherylclaire profile image
CherylclaireForum Support

It makes sense that a vegetarian or vegan diet would not exempt anyone from having a non-dietary absorption problem too. The percentage would be the same as for omnivores.

Since no-one seems sure how many people are vegetarian or vegan (or even how many people have B12 deficiency), it is impossible to tell. Vegetarian and vegan percentage of UK population currently : most sensible figures given lie anywhere between 2% - 7%.

I have been a vegetarian for over 40 years, had no idea until 2016 that there even was a B12 -yet also have a strong family history of autoimmune problems: Grave's disease, psoriasis, vitiligo etc. So who knows ?

What works is what's important.

I tried Boost spray: nothing at all for me.

This process is slow and gains hard-won - I'm not doing anything drastic regarding reduction of injections any more. Coping where I am- but still not where I want to be.

Like many others here, whatever they eat.

Mag999 profile image
Mag999 in reply to Cherylclaire

Again, helpful to hear others experience, I have had periods of deficiencies all my life, with vit d, b12 and borderline thyroid deficiency so I do wonder if there is more than just dietary lack. I have found the injections leave me feeling very rough hence trying tablets but I know my symptoms well enough now I think and will use injectable if they get worse.

Cherylclaire profile image
CherylclaireForum Support in reply to Mag999

Once I was told I was B12 deficient, it also became apparent that my folate and ferritin were low, and that I had osteoporosis of the spine, so given 3 months of folic acid and ferrous fumarate and vitamin D on prescription . It took a couple of years to be able to raise and stabilise my ferritin and folate. My bone density is being tested next week - so hopefully similarly improved. My methylmalonic acid (MMA), having been raised for three years to my knowledge, was finally, on the 6th test last year, within range. My last blood tests were the best results I've had for 5 years.

I haven't changed my diet at all - I now just take ordinary multivitamins and minerals daily, the vitamin D3 tablets on prescription, K2 spray when I remember, and self inject B12 every three days now after 2 years of every other day. Seems to have worked for me - just very slowly.

MMA should go down to within range after loading injections are completed. There are other reasons for MMA to be raised (SIBO is one, renal problems another) and I can accept that being a vegetarian might cause B12 and ferritin deficiencies - but I cannot see how a vegetarian diet leaves you with low folate - what do they all think I was eating for the last 40 years ? I honestly thought my diet was quite a healthy one.

I hope tablets continue to work for you - frequent self injecting is no picnic anyway, is it ?

I am sorry that your doctors have lost interest in your case. I'm intrigued.

It could be that to get better, you first need to get worse, and that this is what you have been experiencing - but it would be great if tablets proved sufficient for you.

Wishing you luck.

Mag999 profile image
Mag999 in reply to Cherylclaire

I think part of the problem is the holistic nature of bodies doesn’t fit the specialist model of the nhs, I definitely have a failing thyroid, osteopaenia, vitamin deficiency plus weird muscle spasms which is what started all the intense investigation for neurological disease which has come to nothing. I think my only option is to keep the b12 going, it’s looking like I don’t absorb as I’ve been 5 days on tablets and going downhill every day so not sure I can give it the month I had planned. The only sensible advice I have had is from this forum, not one specialist has considered b12 relevant. Is it worth measuring MMA when you are getting injections? It hasn’t been done as far as I know but would it indicate improvement?

I don’t know whether to just go it alone or keep on at my gp

Cherylclaire profile image
CherylclaireForum Support in reply to Mag999

You are right about the holistic nature of bodies. It falls to a GP to link all the (often conflicting) feedback from consultants and "holisticise" it , which is why you need to have a good relationship with your doctor. Mutual trust: then you can talk about self injecting, discuss research and findings, rule symptoms in/out. Takes a long time to get through all the consultants one at a time, but if nothing else comes of it, a few eliminations can be made along the way.

Stick to the one GP who has seen you at your worst, who can see that frequent injections keep you from staying there - even if s/he doesn't know why.

Then you can laugh together when a consultant says that B12 is toxic, or that your dizziness and cognitive problems are down to being an ex-smoker, or that your problem is IBS even when your hair is falling out and you've got a bad case of clownsfoot going on.

So I would say stick with your GP (you need to know what folate, ferritin, vitamin D are doing, even if thyroid needs more tests than NHS usually do) -and do your own research, trials and experiments too. Perhaps s/he would be interested in the results ?

It is not your GPs fault, after all, that B12 symptoms are underestimated. None of this is straightforward and none of us are the same. While Nackapan and I are convinced that the menopause has some bearing, for instance, I'm quite sure that's not applicable in fbirder's case. But seeing the same GP means that your most visible symptoms at least are being noticed/ recognised by someone other than your partner, members of your family, friends, employer, work colleagues, the woman in the chemist, etc.

If all vegetarians* developed B12 deficiency within the same timeframe (after liver stores depleted) it would make more sense to me to blame just that - but 35 years seems a long time to get away with it , unless I've got a liver like a pumpkin !

* That's aside from those vegetarians who have started every day with a three-egg cheese omelette and a glass of milk - and have probably died from a heart attack by now instead !

I had my first MMA test, organised (with difficulty) by my GP, after loading injections finished and maintenance injections every three months started, because I was responding poorly to the treatment. I have no idea how high my MMA might have been previously.

The next 4 were by haematologists, the 6th by consultants looking at my DNA.

I believe that the only reason for the final one being within range is the frequency of self injecting. It still took 3 years to get there.

Mag999 profile image
Mag999 in reply to Cherylclaire

I think we are similar age? I had early menopause and have had issues ever since and no one has ever known what to do with me. I had ovaries removed last year due to large cyst and things have been much worse since then, so I agree about the hormonal link, I feel i was tired and grumpy before but now I’m totally wiped and ferocious with vicious aching and cramping muscles. I have at last got a gp who will listen but symptoms had to get to a and e point before they got serious about testing. I will go back to her and talk it through again. 3 years seems very daunting, did you always feel you were on the right track with the injections? I do worry about other possibilities that will be missed till it’s too late for me, particularly on the low days but they have rules out obvious mechanical issues with brain and heart so I have to feel reassured about that.

Cherylclaire profile image
CherylclaireForum Support in reply to Mag999

If your GP listens to you, you can build on that. Don't hold your breath waiting for an expert - there are none. Initially I had a few clashes with my GP - at times both very exasperated - but she said she would not give up and she didn't.

3 years seems a long time, but this is probably because I thought I would get somewhere eventually if I only met the right consultant or read the right research or had the right test. Typical teacher, really- self injection felt like giving up; a failure to convince. Wrong.

It surprised me when my brain MRI scan was normal given my appalling memory, concentration and cognitive issues, but it totally devastated me when no problems were found with my DNA. This is because there are so many autoimmune problems within my immediate family, and all of my sisters' children are autistic. I thought that all of us could benefit from some answers.

I get what you are saying about going down a long, wrong path.

Yes, absolutely I felt as if I was doing that at times. But I could find no other reason for all of my symptoms and neither could anyone else.

It seemed as if everyone else on here was making progress and I was just getting worse - like being the last kid in the class to learn to read. I was mostly just confused and exhausted. When I really needed energy, the source felt very similar to what you see on the faces of marathon "fun"-runners at about seventeen /eighteen miles in : a furious running-on-empty determination that looks like the total opposite of fun.

The only problem I've found with self injecting, honesty and seeing consultants: they stop worrying about your problem and start panicking about your serum B12 levels.

Which, when you have waited months for an opportunity to get 15 minutes with someone you think might have the answers you need, is a massive reality check.

They don't get it, do they: how bad it is ? Heart-sinking.

I met an ENT consultant once, when I had saliva duct strictures and saliva gland infection. He told me that I had typical B12 deficiency, that I was doing the right thing by self-injecting every other day and to carry on because it would take a long time to get well. To be persistent. He got it. Bless his heart for that !

I now self inject every three days, sometimes I forget and it's four days. Well that would never have happened before !

Can't make it once a week yet, but that is not my aim. I just want to be as well as I can be- and stay there. It's happening.

I'm sixty-two.

Mag999 profile image
Mag999 in reply to Cherylclaire

Wow, so much of that I get, thank you for replying again, I suppose I have struggled to accept it is “just” b12 as I felt so unwell, and none of the consultants said b12 was relevant. I think I am now seeing the light via all the replies, I’m getting steadily worse on oral supplement so it has clarified that deficiency and poor absorption lie at the root of things. The stomach acid test suggested above I failed spectacularly, no burping at all at any point so can address low stomach acid as well. Feel a bit more hopeful and have a plan.

Mag999 profile image
Mag999 in reply to Cherylclaire

I read your reply again and remembered a question I had for someone else who also said they met a doctor who instantly recognised b12 deficiency. Did this doctor say what it was that made it obvious?

Cherylclaire profile image
CherylclaireForum Support in reply to Mag999

He was an ENT specialist. I was there because of blocked saliva ducts, strictures and infected saliva glands. and he was referring me on to the saliva gland specialists. He was also responding to my GP's detailed report.

He was kind, unhurried and had read this report, was impressed by it, had it handy and could quote from it without picking it up. I trusted him.

He agreed with me that having saliva gland and duct problems could have an impact on B12 from food sources. He looked at my throat and tongue, felt my glands in neck, and looked at photos I had brought of my tongue. He told me that I had classic symptoms of B12 deficiency.

He is the only person that has told me that I'm doing the right thing by self injecting frequently (at that point still every other day) and encouraged me to continue, to persevere. He told me that it would take a long time.

My tongue still burns every day.

I know it has improved though because I have been seeing an Oral Medicine consultant who has noted this. He wanted my ferritin levels improved - to 80 ug/L. Finally, my last blood test showed 82 ! I've been struggling with low ferritin on and off since 2016. Tongue a better colour, not so coated - but he would like the central groove reduced. Maybe that will happen now ?

This Oral Medicine consultant has helped me already - I no longer get angular cheilitis (split, sore and bleeding corners of mouth) which has been an almost constant problem for well over a decade. He initially thought it was staphylococcal or candida but swabs results for both were negative. I'd assumed just another B12 deficiency thing. He's really keen for me to reduce B12 injections further- now injecting every three days.

I'm really keen to retain all the improvements managed so far.

[I think somewhere in my old posts- if you double click on my name, you can see I included photos of both tongue and mouth. Might be of help. ]

Mag999 profile image
Mag999 in reply to Cherylclaire

Thanks, interesting as I had mumps in February and have been generally worse since then, although definite had symptoms before that. It feels like undoing a great big knot, working through all the different symptoms, going back to injections as am getting the slowed down wading through treacle sensation back so I don’t think I am absorbing oral supplements despite necking about 3000 mcg a day!

Cherylclaire profile image
CherylclaireForum Support in reply to Mag999

When B12 deficient, you are more susceptible to infections and less able to heal. It is haptocorrin, a protective coating, that is released in saliva produced by salivary glands, that if lacking or limited by duct strictures or gland infection, could contribute to an inability to absorb B12 from food (extrinsic factor). Saliva also helps limit bacteria -so I suspect reduction of it might be instrumental in my recurring gum abscesses and the angular cheilitis.

The Boost spray that I tried in desperation, when my NHS injections fell short of helping, did nothing at all to relieve B12 deficiency symptoms.

Getting help one symptom at a time makes this an awfully long process, but unless/until there is a general consensus re what is accepted as a B12 deficiency symptom, primary care will have to treat these as the domains of separate consultants.

We really don't help the situation by all being different, do we ? The positive side of this is that we meet a large number of medical experts- increasing the chances of bumping into someone as knowledgeable as my ENT consultant !

Meanwhile, all you can do is keep daily records, work out what works for you and how long it works for, and aim for preventing the return of symptoms, not waiting for them to reappear in order to control them. This of course might have to be a long-term aim -you first have to be able to eliminate symptoms in order to prevent their return !

Difficult to help yourself when so ill. Keep trying to get professional help. A concerned GP can do your pushing for you -if you find one, stick with them. Mutual trust and respect worth far more than subject expertise.

Long-term, I'm expecting PAS research to alter thinking. But that's far away yet.

Cherylclaire profile image
CherylclaireForum Support

Just thought- B12 deficiency and early menopause can be related : worth looking on b12def.org or pernicious anaemia society's website, perhaps ?

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