This is the letter I got back after requesting my B12 jab which is 7 months late and my symptoms explained. It’s reasonable I suppose however I don’t know about the notification on levels over 1000 he was referring to. I have not had this measured for many years. I think it was before the added symptoms of RLS and pins and needles kicked in on 12 weekly, I was put on 8 weekly after a haematology referral. But at least My letter got my an appointment. GPS still believe a small amount or oral vitamin will get through! ‘’ the recent research suggests’’.
Oral B12 passive absorption evidence ... - Pernicious Anaemi...
Oral B12 passive absorption evidence please.
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Bobonut
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Maybe but not enough ti help most
I would be really annoyed at that letter.
It's basically saying they donr know what they are doing.
Hoping patients ate passive enough yk get get I and eoll over. You can have a blood test. Not needed. You can try tablets??
You can have an I jectuon but only every 12 weeks. Why is that??
In other words toh cannot have tour usual treatment frequency?
It's total balderdash and poppycock. There is no such recent evidence. Ask your doc for a reference to the paper that proves oral B12 is absorbed in people with PA.
The only evidence is from poorly executed studies on people with a B12 deficiency. Blimey, half the studies didn't even try to exclude people with a dietary deficiency.
Unfortunately, this myth has spread like wildfire.
If you're a PAS member I recommend you watch Dr Hajo Auwerda's excellent presentation at last year's conference. Especially at about 13 minutes where he discusses why they use oral B12 in the Netherlands. It's because of two "stupid" studies.
pernicious-anaemia-society....
I will do, thanks, I’m a life member of PA society. I know this was balderdash, just glad of a bit or reassurance.
Your surgery was talking about testing serum B12 , when it’s a known fact that this is a waste of time once treatment has started . My B12 serum is off the scale when I have a private blood test once a year . I still need an injection once a week to keep symptom -free . It’s really outrageous! —— Disgusted of Cheltenham ! Thank goodness for German online pharmacies !
Gambit62Administrator
These are links to some literature reviews that identified studies of the efficacy of oral B12 including use in patients who had PA. The studies show serum B12 levels raised including patients with PA. The studies are small and didn't necessarily include full clinical evaluation.
ncbi.nlm.nih.gov/pmc/articl...
see table 3 - links to references 26-27
ncbi.nlm.nih.gov/pmc/articl...
see table 2 - reference 12 (which is also referenced in the first article.
In the interest of balance this is an article on a study that showed that whilst serum B12 may have been raised in patients using oral B12, the use of other metabolites suggested that they were still B12 deficient at the cellular level.
smw.ch/article/doi/smw.2017...
the study was not specific to patients with PA
One current problem with using high dose oral in the UK is that there isn't a pharmaceutical grade supply, ie you are left using tablets that are not subject to the same levels of quality control as licenced medicines so there may be some variation in dosage.
If you do feel that you want to try high dose oral I would suggest starting it immediately after you have had an injection and don't feel that you need to confine yourself to using just 1000mcg a day.
There have been some larger scale studies which unfortunately haven't distinguished the causes of B12 deficiency - including one that found that about 2/3 of the patients wanted to continue with oral rather than injections after the study. Unfortunately I didn't save a reference on that study.
Do high dose b12 oral tablets or sublinguals help you between injections?
I've almost given up trying as now inject every 6 days. I do however still have 50mcg cyco100pmcg ( methyl)and 1000 mcg cynocobalamin sublinguals 'in stock'
yes, I do find supplements help cut down the frequency of injections - either sublingual or nasal - at present using sublinguals rather than nasal.
If you can absorb B12 from tablets then you shouldn't need injections.
Just take 5000 mcg of B12 orally, three times a day. At 1% absorption (passive diffusion should increase linearly with the dose) that will give you 150 mcg a day. That's more B12 in your body that if you inject once a week. A lot more, because much of the 1000 mcg injection will get flushed out by the kidneys straight away.
There is no way at all for the body to be able to tell how the B12 got into the blood.
Well I dont think I can absorb them as I tried right at the start after loading doses stopped for 5 weeks. Pity I wasnt given s b12 test then!!
I dixnt take 5000mcg though 3x a day. I just got more ill until every other day injections started again.
I'm sticking to my new regime at present a b12 injction every 6th day.
I'm not doing a tablet trial as too symptomatic.
Was just wondering taking what I had at the same time??
I wont at present so I'm clear what the new regime can do.
My husband responded to tablets well and then were low dose. I think its because if this research project and hope that it might help. But then theres the problem of if it gets to cell level.
I thought you csn only absorb so much at any one time from an oral b12 source anyway even if you can absorb?
So with that dose of 5000 mcg of b12 orally 3xa day are you saying everyone would be okay as passive absorbtion different from digestion and absorbtion. ?
Then is this able to get to cell level. ?
I'm not stopping injections as i know for certain it going in and working.
I think I've had to increase frequency as my body uses and gets rid of excess quite quickly??
Surely by now if tablets were adequate in very high doses alot of cases people would not choose to inject. Everyone 9n injections k think have tried other forms ?
"I thought you csn only absorb so much at any one time from an oral b12 source anyway even if you can absorb?"
The absorption mechanism where Intrinsic Factor is used to carry B12 across the gut wall does have a limited capacity of about 10 mcg at a time.
But if B12 can be absorbed by passive diffusion there there is no limit to the amount that can get absorbed (well, not until the concentration in the gut reaches the concentration in the blood). Indeed, a higher dose should have more absorbed by passive diffusion -
"The greater the difference in concentration, the more rapid the diffusion." openoregon.pressbooks.pub/m...
It is a startling coincidence that just about every study that 'proves' passive diffusion uses oral doses of 1000 mcg. And they all find about 1% absorbed (if they find any absorption - and often they do not). The coincidence is that the amount that is absorbed is 10 mcg - exactly the same amount you would expect to be absorbed via the IF route.
Then is this able to get to cell level.
As I said before - the body has no idea if the B12 in your blood came from an injection, or from absorption from the gut. There would be nothing to stop the B12 passively absorbed from an oral dose getting into the cell.
Surely by now if tablets were adequate in very high doses alot of cases people would not choose to inject.
You would have thought so, yes.
Thank you for your detailed reply. The theory is interesting. I'm not putting it to the test though.
Still trying to get to a better place.
Hope if your started thr cocktail of antibiotics they are not too brutal.
The passive diffusion rate is correct - however as the B12 gets mixed up and diluted with other food and gut secretions and as the food is moved quickly down the digestive tract and any unabsorbed B12 becomes enveloped in faecal material, I suspect the total absorbed is much below the theoretical level. Thats why our bodies developed an active absorption method - if ours is destroyed we cannot absorb enough and studies of symptomatic change show that.
Nope. The 1% is wrong.
Otherwise I, and many others, wouldn't need the jabs.
"as the food is moved quickly down the digestive tract " It isn't moved quickly. It moves through the small intestine slowly. All the while getting churned about just so that all nutrients can be absorbed efficiently.
All animals developed an active absorption method because the B12 molecule is both too large and too hydrophilic to be able to cross biological membranes unaided. If it could easily cross biological membranes then we wouldn't need an active process to get it into the cell. But we do - only B12 bound to transcobalamin can enter the cell. There is no passive diffusion. Just like only B12 bound to IF can exit the gut.
I was not saying it didn't need an active transport system. I was trying to emphasise the fact that passive diffusion can never be enough. Injections work because the injected mass stays in one place = a high concentration in one place compared to the low concentration of blood moving past it. Only then can passive absorption work - never in the gut where the B12 concentration is quickly diluted and is expelled within a relatively short time.
Passive diffusion from the gut can never be enough because B12 cannot pass across cell membranes.
Injections work because the B12 diffuses through the interstitial fluid - that lies between the cells.
If it were purely a matter of concentration then B12 suppositories would work.
This is interesting, thanks. So 1% approx will be absorbed as passive diffusion and to get a decent fix we need to take 3 x 5000mcg b12 tablets. Will the Gp prescribe them please. Or do you get them on the internet? Much speculation on the quality of manufacture of b12 tablets as they are not medical grade.
No. Some people believe that 1% is absorbed by passive diffusion. Despite the evidence.
If you absorb 1% then you only need 250 mcg a day.
Whether or not they are 'medical grade' is irrelevant. In the EU you can be fairly sure that a 5000 mcg tablet will contain more than 250 mcg.
Thank you for your expert knowledge on studies you have led me to. I will study them over the next few days. I understand medicine and treatment is based heavily on evidence bases proven science. There is clearly not enough regarding PA so a default is used.
Thanks again.
Thank you for these clinical references. I have just read the first review. Apart from the acknowledgement that most of the direct comparisons were of poor quality, the authors go on to quote successful oral treatment papers. The big problem is that success is raising B12 serum levels and correcting haematological abnormalities in 2/3 rds of their patients. Unfortunately only 1/3rd of patients experienced clinical improvements. Shame about the 2/3rds not experiencing clinical improvements which is not even commented upon by these authors. I have now read the 2016 2nd review. This makes no reference to patient symptoms and clinical improvements whatsoever, yet arrogantly concludes that since B12 serum, MMA and homocysteine markers improve the oral treatment is just as good and CHEAPER .- These are published reviews. My husband is appalled.
The third paper quoted by Gambit 62 is from Switzerland and is interesting because they started with the premise that patients receiving oral supplements would not be negatively impacted compared to those receiving Im injections. Ethically the study had to be prematurely aborted because the patients with oral supplements failed to show anything like the improvements in the biochemical markers achieved with injections. Whilst we patients know that injections produce very significant changes in B12 serum levels and this is why the haematological guidelines say there is no point in testing this post injections, many doctors do not seem aware of this. It would clearly be helpful if someone could explain the mechanism by which post injection highs relieve symptoms both in the short term and with neurological symptoms over a much longer time period.Above all else it would be so much better if doctors returned to listening to their patients symptoms and not blindly believing in laboratory test normal ranges as being the sole desired outcome of successful treatment.
Hi,
Blog post about oral B12 treatment from Martyn Hooper's blog.
martynhooper.com/2016/08/02...
published 2016
Recent PAS news item about oral tablets to treat PA.
pernicious-anaemia-society....
I expect many CCGs/health boards in UK to move to treating majority of patients with oral tablets in next few years.
Gloucestershire already has a treatment algorithm that advocates oral tablets for majority of patients with B12 deficiency and not just for during pandemic. See blog post below.
b12deficiency.info/blog/202...
Unable to read ig as print sk small. Wi get it read to me later! Thank you
What did you have to do to get this letter as I would like to do the same, I'm so tired all the time and I now have pins and needles in my hands daily, it just makes me feel poorly and honestly so sorry for myself, hopefully I can follow in your steps and get this sorted as I have hit a brick wall up to now! Thanks for posting this it's so good to have hope xx
Hello, I followed the advice from the PA society.
I put in writing a nice letter thanking them for their work during Covid and keeping staff and patients safe etc. Then I drew their attention that the BHS recommendation on treating us with PA, pointing out that B12 jabs should be reintroduced as soon as safety possible. With the shortest gap in treatment. My gap is now 7 months as it was due right on lockdown. I explained the reoccurrence of my symptoms even after using skin patches and sublingual drops plus tablets has helped but I remain symptomatic, I get it this week from the nurse My surgery are only just starting this treatment up again and will only stick to 3 monthly.
It’s best to put it in writing legally it should go in your notes. Hope this helps.
That's really helpful thank you so much, I'll draft a letter now and get it sent xx
CherylclaireForum Support
My GP stopped testing my serum B12 levels years ago, once it had read over the maximum (over 2000 ng/L) twice in a row. She said there was no point to checking it again.
She regularly checks only my folate, ferritin, vitamin D and thyroid to ensure these are still now on track. It took years to stabilise folate and ferritin, and am due a Dexascan for vitamin D because I have osteoporosis of the spine. Thyroid okay although there were signs of struggle. These are the usual checks.
Despite high B12 levels due now to self injecting, I have had raised MMA levels for years (now within range finally) and never yet had a symptom- free day although slowly getting there. Serum B12 levels are not always the complete picture.
Some people might benefit from high-dose B12 tablets, but so far the scientific evidence is not sufficient to be able to identify who could/ couldn't manage, and there is no "new" evidence to suggest anything. So it seems that anyone being put on tablets as a replacement for injections is currently being used as part of an experiment, one that is not being monitored or results being recorded and one in which "participants" have no choice.
This is Just my view.
This withdrawal of a long-standing successful treatment while access to GPs is still limited means that decisions are being made remotely, possibly by medical professionals who have never even seen you. It doesn't sound very professional to me.
Recent research trials looking into the reason why some people need more than one injection every 2-3 months found evidence suggesting there was a cause clearly linked to bacteria - hopefully this research will continue. This strikes me as the logical first step toward any change in treatment- and perhaps might bring about a change in attitude.
Thank you
Hi,
B12 article from Mayo Clinic (US)
ncbi.nlm.nih.gov/pmc/articl...
Suggests there is no proof that oral b12 is a good at treating B12 deficiency as B12 injections.
The final sentence of the conclusion seems quite unequivocal on this point.
Also refreshing to see patient's self-evaluation on symptom improvement given validity in a study (table 2) !!!!
Thanks for finding this Mayo clinic report. I found it very informative as well as bewildered as to why medical professionals often still believe in oral treatment above injections and strongly go with the placebo theory.
I've found that timing of oral treatment is important too. I take 15,000 mcg. of methyl first thing in the morning on an empty stomach with some water, then eat nothing for an hour. My neuro symptoms faded after several weeks of this.
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