Pernicious Anaemia Society
14,288 members10,226 posts

Excellent source of information

I have just come across a German website B12-Vitamin.org ( b12-vitamin.com/ )

It makes interesting reading and appears to be very well researched and referenced. It suggests that for normal maintenance a dose of 500micrograms daily by mouth will allow sufficient passive absorption to meet the recommended daily intake of B12, even in the absence of intrinsic factor.

it seems to me that a large dose of B12 im or sub cut will automatically lead to asymptomatic peaks and horribly symptomatic troughs in blood levels of available B12. The recommended oral regime might ensure greater normalisation of blood and wellness levels.

I would welcome your thoughts.

16 Replies
oldestnewest

It may be that specific conditions require a different approach, but for those with a genetic gastric problem with B12 absorption or effects of ageing on the stomach rather than an intestinal issue this guidance on oral dosage could be useful.

1 like
Reply

Hi,

The only thing that makes any big impact on my symptoms are B12 injections although I take sub-lingual B12 as well.

Personally I'm not convinced that passive absorption after oral b12 would be enough for PA sufferers.

So many of people on this forum appear to have neuro symptoms and I don't think enough b12 would get through passively after oral tablets to enable nerve repair.

I think your point about large doses of B12 causing peaks and troughs in symptoms is interesting.

I think Gambit62 has mentioned B12 treatment sometimes triggers a response in body that can lead to functional B12 deficiency. I've having a brainfog day so can't remember the details, perhaps Gambit62 can add them at some point.

I think the current UK B12 treatment patterns probably cause peaks and troughs eg one injection every 2 or 3 months then nothing until the next one.

BNF

bnf.nice.org.uk/drug/hydrox...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Articles about oral b12 treatment

b12researchgroup.wordpress....

Blog post from Martyn Hooper's blog

martynhooper.com/2016/08/02...

PAS news item on Injections being replaced with oral tablets.

pernicious-anaemia-society....

pernicious-anaemia-society....

1 like
Reply

as ever, the problem is projecting generalisations back on to individuals.

There are many studies showing that high dose oral can be an effective maintenance regime, including one large study in Canada - and some people do find it preferable to life long injections but there are always a significant number who don't respond and there were those that preferred injections.

As ever, I wouldn't recommend supplementing high dose oral unless you are sure you have an absorption problem. If you don't then much lower doses will be quite effective.

Yes, 1% of B12 is absorbed outside the ileum ON AVERAGE - that means some people will absorb more and some will absorb less and at present we don't have a way of saying which is which ...

In general the studies have only been looking at measuring serum B12 levels - which we all know is a dodgy measure - rather than looking at the preferences of the patients and what happened with their symptoms (aside from whether the patient preferred injections to tablets in the the Canadian study (and I'm not sure I could find the reference to it again - apologies).

We need to move away from assuming that one-size fits all.

Reply

I totally agree about generalisations but the various dosage schedules for oral therapy seemed well researched.

I am in a slight quandary myself regarding oral treatment as opposed to injections.

I noticed a significant decrease in bruising and senile púrpura and ecchymoses when I was self injecting every other day. It was a totally unexpected improvement in a symptom that really troubled me and for which no effective treatment is recognised. Because I felt so much better I stopped injections and started high dose oral supplements daily instead. Within a couple of weeks the bruising and bleeding increased again! Reluctantly I assumed that the oral route was not as effective and yet the data presented in this web site seemed to me to support the efficacy of oral supplements.

The other reason I am surprised by the recurrence of a very easily recognised symptom is that I would have thought that every other day injections for around three months ought to have replenished the B12 stores which shouldn't have been exhausted so quickly after stopping injections especially as I was still supplementing with a high oral dose.

I cannot explain this at all. Help please!

1 like
Reply

Hi,

Can I just ask what "senile púrpura and ecchymoses " are?

Reply

Sorry. It's "doctor speak"! I do try to avoid it because I know how incredibly irritating it is!

Púrpura are tiny bleeds into the skin - looking like small purple dots.

Ecchymosis is the medical word for bruise. Senile eccymoses are the big purple blotches that can appear spontaneously with no trauma just under the skin of elderly people. You often see them on the hands and arms and legs if old people.

The usual explanation is that the blood vessels become more fragile with ageing and the loss of connective tissue under the skin means they are no longer supported in a plump tissue bed. This allows the blood to leak into that area and spread just below the skin surface. There is no medical treatment.

I had these horrible old lady blotches on my legs. They take ages to lose the bright purple colour and they leave brown pigmented patches under the skin which take months or years even to fade.

I couldn't believe it when they stopped appearing when I used the B12 injections! I have since seen brief comments online about B12 being a possible explanation of these ugly bleeds, but it is not generally recognised as a cause.

I've bruised very easily after minimal trauma all my life. After I had pneumonia as a young woman the specialist investigated me as he noticed so many bruises on my arms and legs and after varicose vein surgery the surgeon had never seen such bruises! I now think this might all have been caused by unrecognised B12 deficiency.

I've given a lot of detail because it could well be a much more common problem. I remember my father had loads of these purple blotches on his hand. He had a partial gastrectomy when he was young and it was always put down to being old and he never had B12 treatment. It could be an easily recognised clue to a very important diagnosis.

2 likes
Reply

Could this also be what is causing my dark circles under my eyes? I have average skin for a 57 year old, and the average “bags” that show up sometimes under my eyes. But just below that I have dark stains that will not go away. I self inject once a month, had a gastrectomy due to intrinsic factor with pernicious anemia in 2003

Reply

I really don't know, but all through my dull life I have also had dark rings under my eyes and if I rub my eyes for any reason I get bruises under my eyes. I suspect this occurs a a result of the same capillary fragility and blood seepage. It has not been affected by B12 so far, but fingers crossed.

Reply

This very internering can maybe give the answer!

It might be a reabsorbing problem.

Good stuff about oral b12 as well!

And Dewbuc - did you inject hydroxocobalamin, and take methylcobalamin orally? You might have been short of adenosylcobalamin then?

Happy New year, by the way 😊

2 likes
Reply

Thank you for posting Dewbuc. I found it fascinating reading, especially the information on latest breath test research, *raising the level of serum test results, B-complex supplementation, fermented products and the effects of stress and exercise depleting B12.

*. "many scientists now consider levels under 350pg/mol to be deficient. Recent studies even claim that a realistic value would be set at about 500-600 pg/mol."

Forum reading reveals that responses to b12 supplements or injections appear varied, complex and highly individual, depending on history, age, diet, medication etc. This is also illustrated in researcher, Dr Wilhelmina Rietsemer's, reply in 'Rapid Responses' to the BMJ research document:

"Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral hydroxocobalamin. [1]"

............

I still feel that, in view of the serious neurological consequences of long term lack of absorption and the short window of opportunity before they become permanent, injections are the safest way to go.

I, personally, took 5000 mcg Methylcobalamin sublingually for a few years before resorting to self injection every other day when neurological symptoms appeared after two viruses (which now makes sense after reading this research). Symptoms have improved significantly but, even so, after ten months of SI, they reappear under any stress, overdoing exercise or very small amounts of alcohol. I realise in hindsight, that age, Hashi's, h/pylori, gastric problems and years of various medications, means I should probably have started S.I. earlier.

The other interesting piece in this research (which I cannot find again 🤔) was that B12 deficiency eventually causes vasculitis. My relative's psychiatrists were adamant that her hallucinations and memory loss were caused by vasculitis/dementia and not B12 deficiency, in spite of her history, symptoms and diet all pointing to B12def. that was left too long without treatment.

4 likes
Reply

The whole subject of B12 deficiency and it's treatment is so complex and still very poorly understood.

I suspect that in time it will turn out to be of massive importance in numerous diseases especially, but not only, those associated with ageing, like dementia, Parkinson's, ataxia etc for which treatment is still inadequate, but where preventive strategies could potentially be incredibly simple and cheap. The economic consequences of ignoring this vital aspect of cell metabolism and neurological health will I suspect be enormous. I think the disregard of the experience and understanding of patients with B12 deficiency will end up being very costly both in terms of personal suffering and NHS expenditure.

I am a retired doctor and certainly was unaware of the enormity of the problem. My personal and family history and the medical dismissiveness of my concerns has made me attempt to understand all of the issues in order to self treat myself optimally. I have found it very difficult and feel totally abandoned by the medical profession. This feeling is I know shared by many contributors to this website!

8 likes
Reply

I agree absolutely and know from experience how stressful the whole process can be and still is - as I suspect that my daughter and granddaughter have this problem (five in the family with autoimmune disease).

I despair though when even a doctor, who reads and understands the complex research, is still dismissed and abandoned. It gives little hope of any progress in the future☹️

I found it comforting to watch the Sally Pacholok film (now free on utube and posted on the forum a week or so ago) and see again the struggle she had with eventual recognition of the horrifying effects of B12def. and know I'm not the only one 'obsessed with B12', as described by two close friends - little do they know just how obsessed I am 🤓

Sally Pacholok quote at the end of the film :

"It's simple - if a person has symptoms and you haven't ruled it out, you haven't ruled it out".

5 likes
Reply

I’m pretty sure depression goes hand in hand with PA. My psychiatrist told me because of my health history I will always need psychiatric drugs to deal with my depression.

Reply

I only know I tried every method known to man to take B12 —sub-lingual ,lozenges , nose and mouth sprsy,patches , and diet .All to no avail - I wanted to avoid self-injection . I had been diagnosed with Pernicious Anaemia , after many many months of being told that there was nothing wrong with me . ( had to find a private GP, who diagnosed me , after the appropriate tests . So I am envious of PA patients who are able to benefit from those more concervative methods . Having said that I am glad to say that injections are cheap when self-administered and bought in bulk . Everyone has to find the best method for themselves in the absence of knowledge and downright ignorance on the subject of P.A. The awful thing is the disdain with which many patients are treated because of this ignorance and lack of empathy . Thank God for the PAS and Martyn Hooper .

6 likes
Reply

Thanks for all your responses. I really appreciate the knowledge and support provided by this forum. For many of us this is not available from the doctors we should be able to depend on. As a retired doctor myself I find this quite scary and for many people with little medical knowledge it must be absoutely terrifying.

❤️❤️❤️Happy New Year to you all. ❤️❤️❤️

🍀🍀🍀Let's hope it will be happier and healthier for us all.🍀🍀🍀

9 likes
Reply

Thanks Dewbuc - very interesting.

I am, after 15 months off sick, going back to work on a phased return. I could not have done this (or even thought about it) without a frequency of injection that I can now only get by self-administration. Even with an injection every other day, I have blips, most often when I have been overdoing it in some way.

This decision has not been an easy one, but became inevitable after haematologists advised my GP to halve the monthly injections I was getting, "in line with guidelines", and as I was already struggling at this point, the decision made itself.

For roughly 45p daily (the cost of an injection every other day), I might be able to retain my job. One injection every other month would have soon left me totally unemployable.

It has taken 3 years to get back this much of my life. I believe there is still improvement to be had and will keep trying for a better balance- this forum has been invaluable to me.

Stay hopeful, Dewbuc, and best wishes for 2018 to everyone !

Reply

You may also like...