I am disappointed to read online that sublingual b12 can not work as the molecule is too large to be absorbed that way. I used to take sublingual but I suppose the amount I took and my blood levels being at1054 would suggest that they did not absorb considering I have been having B12 injections every 8 weeks and the lozenges where supposedly 1000mcg which I took every day. Why can they keep selling them as sublingual?
sublingual B12 pointless?: I am... - Pernicious Anaemi...
sublingual B12 pointless?
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lesbud1
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I only know that sublingual B12 , nose sprays , mouth sprays and patches didn’t work for me, but some people say that they benefit from them .
Gambit62Administrator
as well as absorption in the ileum there is a phenomenon known as passive absorption which happens outside the ileum. This absorbs on average about 1% of the dose passing through the gut - but there is a huge amount of variation. This mechanism is totally different from the mechanism used for general B12 absorption and, as far as I am aware, nobody is sure exactly what is going on.
Some on this forum believe that this phenomenon doesn't apply if you have PA but below are links to two papers indicating that is not correct as passive absorption seemed to occur in patients with PA as well as in patients who had other B12 absorption problems - though it doesn't work for a signficant number of people.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
The second article has a section specifically on PA - studies there show that clinical symptoms were resolved/improved in around 20% of patients, with about 80% showing an increase in serum B12 levels.
Reality is that sublinguals are only marginally better than high dose oral - average going from just under 1% (oral) to just over 1% (sublingual).
Whilst it may not be related to passive absorption at all I was talking with a family friend at Christmas who is a research biochemist and they commented that they are increasingly finding that quantum effects apply in biochemical systems
excuse my ignorance but could you explain in basic terms what quantum effects apply in biochemical systems might mean to us B12 def sufferers. thanks
no problem - physics background:
classically we think of waves and particles and that works for most of what we observe but when we start looking at something that is very large or very small these concepts don't quite work and things we expect to behave like waves start behaving like particles, and vice-versa. Molecules are particles in our ordinary understanding but in some situations - the very small - they seem to behave a bit like waves which means that membranes don't stop them the way we expect them to and some manage to get through when our classical view says they shouldn't.
To be honest the size of the B12 molecules and the average amount of B12 that is absorbed passively make it unlikely that it is actually a quantum effect alone but it may be in the mix somewhere.
Nobody has done a study looking at people with PA. They all use people with a B12 deficiency that is assumed to be PA. Almost all of these studies were done before it was known that PPIs and metformin can hinder (but not stop) B12 absorption.
If B12 could easily cross the membranes of the mouth (or gut) then we would all be taking B12 suppositories. The rectal membrane is the same as that of the mouth and the B12 would remain in contact with it for a much longer time (hours compared to minutes). Somebody tried to patent B12 suppositories - they didn't work.
If it could cross the gut wall via passive diffusion then we wouldn't need B12 at all. The human large intestine contains bacteria that produce B12. We can't make use of this because it is further down the GI tract from the ileum - where B12 is absorbed. But if it could easily cross the gut wall then we could absorb all the free B12.
Studies have compared oral B12 and sublingual B12 in normal people. They find roughly the same amount is absorbed - about 1% of a 1000 mcg dose. It it were absorbed sublingually then you would have some absorbed by that route and some absorbed by the ileum. You don't so it isn't.
Saliva contains a protein called haptocorrin that binds with b12. That will make it impossible for it to be absorbed.
Ive been trying to work out that if you need daily injections like me how much sublingual b12 you would need to take to have the equivalent to a 1ml injection, given you only absorb 1% of sublingual b12 & ignoring the saliva issue. Am I correct that in theory that would be 100,000? Injections are definately cheaper!!
The better than b12 Methylcolabamin spray seemed a bit helpful to top me up ontop f my jabs when I was having them alternate days. (Maybe wishful thinking given the research?) Now am on daily I dont feel I need the spray at all...the difference is chalk and cheese!
I am, not formerly diagnosed with PA as the instrinsic factor test was negative and my b12 was low but in range.....however my decline was remarkable like what happens with PA without treatment & the only thing that has made a massive difference is regular b12 injections. So for whatever reason I have a longterm issue with absorbng b12 which has caused neurological damage
Hello Waistlines, do you mind me asking, are you paying for your injections, I ask as my B12 has come back at 300, and the Doctor says that it is in range, so will not give me injections, but advised to try some other form, I am using under the tongue drops. I have many symptoms, feeling dizzy, bad memory, my toe nails are white, but worst of all is the neurological symptoms. I have had these symptoms for many years, but has definitely got worse. I am 62, like to swim, and am very happy, so I know it's not depression, but have all these strange negative thoughts in my head too. I have a call from the Doctor today, I'm hoping to persuade him to give me injections, otherwise I've hears Superdrug, give injections but you still need the Doctors approval. But I've read you may need them every other day initially, and it's £29.00, a time.
Would really appreciate your thoughts.
Apologies jilly1234 for my slow response....seems to be a fault on the message alert symbol not notifying! Lol....
I do get my b12 injections on the nhs. I did have to buy the vials and needles for 6 months until a nhs neurologist backed me and I then got them on the NHS. Buying the b12 vials and needles is much much cheaper than having an injection privately at £29 a throw. Ouch!
The symptoms you are describing are neurological and the nhs guidance says doctors should not delay but start injections every other day. Many doctors wont do this. At a level of 300 many people have symptoms. The PA Society says everyone should be 500 upwards. I dont know why GPs are so resistant as b12 is very cheap and if you self inject like me costs are minimal to a practise. You wil lhave to push or buy your own. Have you looked at b12d.org -they have a symptom checker/treatment advice, set up by GP Dr Chandry (now retired) Might be worth doing and showing your GP.
Hi Fbirder, You are very knowledgeable so may I ask a question. When you and others mention absorption, do you mean absorption into the blood stream? If you mean blood stream, then when serum B12 is higher than it previously was when having follow up blood tests after supplementing with sublinguals then surely it is being absorbed into the blood. Whether it is then transported into cells, is obviously another issue. If my serum B12 rose from 191 to 1170 (over a period of time) by taking sublingual B12 then it obviously got absorbed into the blood stream to be measured. Then when I started taking 500mcg sublingual form per day, my measured serum Total B12 shot up.
Do you think that the situation with injections is when injecting directly into the blood stream, this going to put a massive amount of B12 into the blood and therefore massively available to cells. And even in a situation where transportation into cells is a problem then the massive amount in the blood stream will force some into cells? Whereas with sublinguals you don't get that massive influx. However if you build your serum Total B12 measurement up by sublinguals into the 1,000's + and sustained, which appears to me to have been possible taking 5000mcg per day then aren't we achieving the same thing only it takes a little longer to get replete (in the blood stream at any rate)
Or am I missing something, misunderstanding?
That all sounds good, except that I don't think you'll necessarily get more into the cells if there's more in the blood.
Transportation of B12 from the blood into the cells is an active process. A bit like the Intrinsic Factor protein is needed to get B12 from the gut into the cells of the gut wall and, from there, into the blood, so another protein, Transcobalamin (TC) is needed to get B12 from the blood into the cells.
Special receptors in the cell wall grab hold of the TC-B12 (aka holotranscobalamin, or 'Active' B12) Although this is still not quite clear, it seems that the cell produces more of this CD320 when the cell needs more B12. researchgate.net/publicatio...
Because this isn't a passive process it will have a limit on how much can be transported into the cell. Which means more outside doesn't necessarily mean more inside.
There are lots of things that can go wrong with the transportation of B12 from the gut into the gut wall and from there into the blood.
There are even more things that can go wrong with the processes of getting B12 from the blood into the cell, transportation within the cell, conversion of B12 to cob(II)alamin and conversion of cob(II)alamin to either methylcobalamin or adenosylcobalamin - any of which would cause a functional deficiency (where there's lots in the blood, but it's not able to do a proper job).
I am confused normally but more so by this. Once B12 injection is given it gets absorbed into the blood, yes? So if I get this correctly some of us won't even be able to absorb it into the cells???? surely that would be fatal or is there some passive absorption that keeps us going? Or am I completely confused?
The whole thing is very complicated and not well understood. The field of how molecules move into and around cells hasn't been studied a lot. But interest has grown recently, especially in the way that some drugs can affect the transporter proteins that decide what can come in and get out of cells.
There are inherited diseases that affect the transport of B12 into and around the cells. Some of these are known - they tend to be spotted in infancy. I would guess that a lot are fatal, because no B12 is getting to the right bits of the cells, and lead to a failed pregnancy very early on.
Other genetic faults are likely to cause an impairment in the transportation of B12, rather than a total failure. These will cause problems to a varying degree. But looking at the genes responsible for those transporters is only done very rarely.
There are some people who have measured high levels of B12, yet they still have symptoms of a deficiency. Some of them also have raised levels of MMA, which means that the B12 (or folate) isn't doing something right.
We also know that many people need very high levels of B12 to prevent the symptoms. Again, nobody knows why, although the PAS is involved with some research where early results are suggesting there may be a difference between them and those that can cope with one injection every three months.
There really is a lot we don't know.
It's really worrying that doctors don't take more notice of the research around B12 deficiency and all its possible causes. I expect the next thing the GP will tell me is that my levels are too high and I need to wait for them to come back down and I will have to tell her that if she does this I will be injecting more often myself and that I intend to take legal advice. Thanks for keeping us updated.
I don't blame the docs for not being able to keep up. I have custom search tools set up so I can look at the latest stuff. And questions from here give me an incentive to look things up. And I still can't keep up with it all.
And B12 is a very small fraction of what doctors have to cope with. Just trying to keep up with the latest developments in cancer would take them more time than there are hours in the day.
What I do blame them for is refusing to listen to what their patients tell them when those patients back it up with real scientific documents. I can sympathise only too well about how they get inundated with patients waving printouts from 'nuttytheories.com' saying that they have read how their symptoms can e fixed by taking wombat poo - and can they get it on the NHS. But not when they get articles from the BMJ waved at them.
Hi..as ur knowledge is immense regarding b12.. do have have any idea that high b12 levels in pregnant mother can give birth to special need child... as Per john hopkins university..TIA
You have asked this question in many other threads.
The answer is to the question - "Will high maternal B12 cause the child to be autistic?" is - almost certainly not.
The answer to the question - "Will low maternal B12 or folate cause the child to be autistic?" is - almost certainly not, but not as certainly.
Nobody knows what causes autism. Nobody. Anybody who says they know what causes autism is a liar.
In regards to your first sentence
"Nobody has done a study looking at people with PA"
I have found at least one example of a study that looks specifically at absorption in patients with pernicious anaemia as diagnosed by the schilling test and found that all 9 of the patients in the study managed to raise serum B12 levels using oral supplements.
This is just one of the studies referred to in the articles above.
ncbi.nlm.nih.gov/pmc/articl...
it showed raised serum B12 levels through use of oral B12.
I haven't been through all the other references.
Its interesting isnt it Gambit. I tried to treat through good quality sublingual b12. However my symptoms didnt abait. I do find the sublingual methylcolabamin helps when taken in addition to the hydroxInjections. I dont believe I store b12 and maybe there is an uptake issue from the blood into the cells as the only way I can keep my symptoms low is twice daliy injections plus sublingual methyl tablets. Seems bonkers to me to have so much pumped into my system but it works. Even my GP is converted as she has seen the dramatic difference. Theres a lot still unknown and I do hope research unravels this. I think the nhs is far far to rigid on treatment and as a consequnce people suffer damage throgh inadequate treatment protocols or delayed treatment.
Wow, imagine having a GP who listened to you! Mine has made me feel so crazy that even not being able to feel my fingertips I wasn’t sure if I needed more b12 as I had one 2 1/2 weeks ago. Guess what? After my injection I can now feel my fingertips.
There you go.....youre right...... maybe you need a higher frequency of injection. Your symptoms are neurological so you should have injections every other day until no further improvement.
Yes, you’re right. I find it hard to shake the idea that I am doing something illicit so try to do as little as possible. I guess my fingers haven’t received the memo that they’re suffering from hypochondria.
No need to hold back -you excrete out what you dont need. Its time the medical profession woke up to the fact that many of us need more than what they prescribe. My GP wasnt convinced initially so had to wing it alone but when she saw the huge improvement after Id been self injecting for three months she was truly amazed, could tell as I walked in with ease into her office.....and from then on has been supportive. I did have to get a nhs neurologist to under write my daily treatment.
thank you for all that info. I will be injecting if I feel my symptoms are creeping back up on me from now on.
I wouldn't wait for symptoms to creep back. Damage is happening I believe, even when you have no symptoms. If you wait for symptoms, you are waiting for the damage to be bad enough to show up. Just because you can't feel it doesn't mean that damage is not happening. I would say personally speaking only, that if you have history of damage (symptoms) then I would say you need to be proactive, which is something that you can do with supplements. Which the GP has no control over. I check my homocysteine blood levels (NHS). B12, if functioning in cells converts homocysteine back into methionine. Therefore if homocysteine is at an optimal level 6 -7 (not as high as normal range) then its a good indicator that B12 is functioning well. If Homocysteine is higher, the first thing that is advised to do is take B12 and B vits. Amongst other supplements. Google Food for The Brain (website) homocysteine. Blood needs to be in the lab within half to an hour of being drawn so you need to ask GP to request on your record and then have blood taken at the phlebothamy dept at a hosp (check their labs can test for ) We have 2 hosps in our city one can test for one can't. Just ring and ask. Obv this means that you can't have a private postal test.
I have PA and get my injections every 8 weeks and also SI in between if I need it. When I'm at work and can't inject I do find temporary relief on a bad day from sublinguals. It takes a couple of solgar 5000mcg methylcobalamin to give me that little boost though.
Do the solgar ones dissolve well sublingually?
Actually, yes that's why I like them. I've tried Jarrows and found them too large and really hard. Solgar fit just nicely under the tongue and a litte more powdery than Jarrow so they dissolve better & quicker. They taste good too but do give you a red tongue for a short while. I only need to use them occasionally now but used to pop two (2 x 5000mcg) under my tongue for a quick fix at work. When I say quick, normally took about 30 - 45 mins to bring feeling back to my face and take the swelling out of my tongue. Jarrows couldn't do that. 🙂
That sounds good. Ive been buying no shot which dissolve quickly but they are very expensive. I will have a nosey at Solgar -thanks. Ive been doing 10,000mcg methyl on top of two injections per day. And am finally feeling better tremors reducing. . I dont understand why I need so much but if I reduce my symptoms come back with a vengence within one to two days.
I my worst i was injecting every day on top of my 8 weekly injections & taking 4 x 5000mcg sublinguals. Its coming up to 5 years since my diagnosis and I find I only need a couple of top up injections each month now. How are your folate levels? I'm finding that's the cause of symptoms now as despite supplementing I'm still only just at the bottom of the range. Can't seem to raise it at all
I take thornes basic b complex with folate. Will ask my GP to check. My red blood count & iron are great. Ive been doing b12 injections for over two years. Was fine on daily & then a few months ago noticed symptoms creeping back so increased to twice daily all well again for a while then same thing so added methyl and now back to where I was.....except for burning sensation in feet. Bizarre! Will check the folate. Thanks.
I take the 5000 strength sublinguals in addition to SI and I definitely feel they help me, thus regardless of any recent research I am going to continue taking them. I just pop one under my tongue each morning as I walk to work so its no hassle ....why not if I feel it helps.
Well this is one very odd thing in my experience, last week I phoned the PA society to discuss a few issues regarding my choice of B12, ( methyl or Hydroxo) and also the frequency, I was advised by the lovely guy I spoke to, that the majority of people in this country use hydroxo and that a large % get by perfectly adequately on one injection every 3 months, he said that was the protocol he was on.
I mentioned that Martyn Hooper takes Methyl ( according to his book) as and when he needs it, but the guy said that Martyn no longer follows that protocol and only uses sprays ??, was a bit too bamboozled to ask why and also didn't want to pry into another persons medical journey.
So I'm not sure what sort of spray, well to be honest I was flummoxed when he told me that.
Who wants to "get by" -personally I think treatment should be aimed at amelioating symptoms as much as possibel! Doesnt sound like Martin Hoober at all. How strange to tell you that sprays alone work.
that sounds odd. I hope someone can shed some light on this.
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