Sublingual B12?: Was wondering if... - Pernicious Anaemi...

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Sublingual B12?

Dfthbhjj profile image
17 Replies

Was wondering if anyone can tell me if sublingual B12 could be used as an alternative to injecting? I assume the b12 would be absorbed into the bloodstream via the mucous membranes in the mouth. It seems B12 in this form can be easily purchased from UK suppliers so I was thinking could be much easier than self injecting. Obviously if it's not effective then I guess no problem, also if it is effective does anyone know what dose you would need to take? The tablets I've seen claim to have 1000 micrograms of methylcobalamin which I know is a slightly different compound to the injections. Anyway just thinking this could be a much easier way to go for me if it works in addition to the 3 monthly injections that the doctor won't increase. Thanks for any info/advice. Owen

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Dfthbhjj
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17 Replies
Nackapan profile image
Nackapan

.Didn't work for me .

Very good if the cause dietary.

It is processed the same as tablets .

If an absorbtion problem only passive absorbtiin possible from any oral sourcd of B12.

You shoukd get 2 monthly b12 injections at least! if requested .

In the guidelines

Dfthbhjj profile image
Dfthbhjj in reply to Nackapan

My deficiency isn't dietary, seems to be an absorbtion problem, although my intrinsic factor test was negative. When I initially was diagnosed the doctor made me take supplements for a couple of months and retested, my B12 level actually went down. I was just thinking that the sublingual B12 would be absorbed through the small blood vessels in the gums, mouth etc bypassing the stomach, or maybe I'm wrong? I guess the amount that actually gets absorbed this way might not be very high though. I suppose trying it could be worth a shot.

wedgewood profile image
wedgewood in reply to Dfthbhjj

About 50 % of Pernicious Anaemia patients get a negative Intrinsic Factor Antibodies test . This is acknowledged in the latest NICE guidelines ( where Pernicious Anaemia is referred to as “ Autoimmune Gastritis “ . ) So that a negative test does not necessarily mean that you do not have P.A. The problem is that the antibodies sometimes do not show up . We need a better test ! But if you test positive , and have symptoms of P.A. ( there are very many . You do not get them all !) then you do have P.A.

As for the sub-lingual supplements , I tried both the tiny lozenges and the mouth spray , and neither worked for me ( also tried the patches -same result ) Someone suggested that the B12 molecule was too large to be absorbed through the sub-lingual membrane . But some members tell us that they work . So I suggest that you give them a try . If they don’t help , and your GP will not give you ant extra , then do what we do on this forum, and self -inject . It works 100% , as you know . Cost? About £2.00 for an injection - so not expensive including all you need . . The single use B12 ampoules ( Hydroxocobalamin) are obtainable from excellent German online Pharmacies ( b12 ampoules are an OTC item in Germany ) You can inject I.M. or sub-cutaneously( like diabetic patients do . )

I hope that the sub-linguals work for you . Best wishes.

Nackapan profile image
Nackapan in reply to Dfthbhjj

An absorbtiin b12 deficiency even with no diagnosis of PA ( the worse the deficiency the less likely to have any antibodies to detect it seems) ) ard most effectively treated with B12 injections. That's why they were produced.

Straight into your bloodstream.

No ifs or buts or high cost oral tablets to take very high doses throughout every day that can raise serum b12 levels but it's just circulating in your blood and not going anywhere.

Give them a go. In rare cases theh csn work. But dont give up your injections.

I trialled high dose tablets inbetween injections.

Made no difference which I was disappointed by.

Dfthbhjj profile image
Dfthbhjj in reply to Nackapan

I did notice they aren't exactly cheap too, seems a lot of supplements are marketed towards fitness enthusiasts who will pay whatever they charge. I have my next injection at the doctor's on Tuesday, but I've felt like I've needed it for the last month and a half or more. I think I need to take the plunge and order the vials and needles. I'm not scared of injecting myself or anything just you're conditioned to think doctors know what they're doing. I'm fed up of not getting anything out of my free time and not having energy to be active, along with all the nervous related symptoms on top. Better to take things into your own hands than to feel like you're existing rather than living.

Nackapan profile image
Nackapan in reply to Dfthbhjj

Yes it's a good idea .Meanwhile push for more at the surgery as stated .

So on your medical record

Existing is no fun is it !

G.ps need to have an open mind .

Also to rule everything else out .

They have no training in the complexities of a b12 deficiency.

They were convinced something else going on for me to have such severe symptoms .

Glad to be Investigated.

Not glad to be told i must be depressed. Menopause ect

When a yoga course mentioned for anxiety I didn't have....moved to next G.p in the practice.

I was on no medication . No known conditions.

To date nothing else found to treat 5+ years on.

This forum a life saver .

Knowing what to ask ect .

Real peoples experiences.

A very misunderstood condition/ disease.

Midnight_Voice profile image
Midnight_Voice in reply to Dfthbhjj

3 hours after being diagnosed with phlebitis by a GP, the DVT (for that is what it was) broke free in my leg and became a saddle PE. The doctors in A&E did all they could, including resuscitating me after I was clinically dead for 20 minutes, and I survived. I now celebrate two birthdays; next year, I’ll be 20, and 79.

The doctors in A&E knew what they were doing, fortunately.

But the GP did at least cure me forever of the delusion of thinking that doctors always know what they are doing,

Hockey_player profile image
Hockey_player in reply to Dfthbhjj

It's really important to get injections often enough. If you can't convince your doctor, you might have to self-inject like many people on this forum. I agree that it is so much more convenient to take matters into your own hands. My husband learned how to do the injections, and now I don't have to leave my house for them.

Budsa profile image
Budsa in reply to Nackapan

Hi Nackapan,"No ifs or buts or high cost oral tablets to take very high doses throughout every day that can raise serum b12 levels but it's just circulating in your blood and not going anywhere."

I don't get it. What is the difference between raised serum b12 from oral supplements and raised serum b12 from an injection?

bookish profile image
bookish in reply to Budsa

I'm afraid a lot of people don't get it and I think partly that is because B12 metabolism is not yet fully understood. Presumably it rather depends on where along the complex process your own particular issues are. Oral B12 seemed to work for me, some reduction of some symptoms and serum B12 went up. Then I needed increasingly large doses - oral, sublingual, sprays, patches, taking vast amounts. Neuro symptoms getting worse but slowly. Methylfolate helped hugely, some symptom reversal. My serum B12 was top of range. But when injections were suggested and trialled it was a whole different game. Now I am (slowly) regaining (some) lost ground. So at what point was the oral not enough? I have no way of knowing, but I will not go back to just oral, nor stop the methylfolate (small dose). If injections had been suggested many many years ago maybe I would be in a very different position to my current one. I know I am in a much better position than some because I did use oral early (all my adult life and much of my childhood) and knew that I have an extensive family history with B12/folate, but it took a lot of reasearch to find that B12 in blood does not equal B12 in cells doing its job. And I was lucky to recently come across an interested GP. Best wishes

Hockey_player profile image
Hockey_player in reply to Budsa

It's good if you have raised levels for either one. But if you have pernicious anemia, then the mechanism for transporting B12 into the body is broken. So the oral supplements may not raise the levels enough for some people with PA.

Nackapan profile image
Nackapan in reply to Dfthbhjj

Remember some have 3 or 4 IFAB tests done to get a positive one.So ususlly a private test to do so many .

Some nevef know the cause of their absorbtion problem.

Not all known causes are understood.

Most common ie Pernicious Anaemia. A term not even used now in thd latest NICE guidelines???

Your response to treatment and frequency is the most important factor .

Hockey_player profile image
Hockey_player in reply to Dfthbhjj

That is pretty strong evidence you need injections instead of sublingual supplements.

charks profile image
charks

Although I have PA I find sublingual B12 works for me. But you have to takes lots. With PA B12 can only be absorbed passively and only about 1% of the B12 supplement will make it into the blood. I buy 5000mcg sublingual B12 and have 2 -3 droppers a day.

So although you don't have PA sublingual B12 should work. Just one problem with sublingual B12. The B12 molecule is too large to cross mucous membranes. The sublingual liquid get swallowed and is absorbed in the gut the same way as tablets. So I dilute the sublingual B12 in water and drink it regularly through the day. This gives the B12 more chance to get into my blood stream because passive absorption is very slow.

Enuffisenuf profile image
Enuffisenuf

It didn't help me, but I guess it depends on why you have low B12.

Rexz profile image
Rexz

Here's my take... for those with PA they don't work. Even for those without I am not sure they work through being absorbed sublingually or through the skin in skin patches. For those with B12 def due to being vegan certainly sublingual will work but only through the swallowing of the B12 Saliva mixture and absorption through the normal terminal ileum process. Here's a repost of a post I made about three months ago...

I've researched this also and there are no evidentiary studies that remotely suggest skin patches work. The B12 molecule is the biggest and baddest molecule on the block by far. That's why it is the only vitamin that is given such special VIP treatment through the digestion process. Much like a super tanker needing many tugboats to guide it into port. Our port is the terminal ileum, the last part of the small intestine where our designers installed special receptors for the Intrinsic Factor that is bound to the B12. The receptors do not recognize the B12 molecules by themselves.

Most molecules that work with patches are around the 150 to 250 molecular weight. I think nicotine is around 150 or 160'ish so these are easily absorbed through the skin. The B12 molecule weight is over 1,200.

Same issue with sublingual or nasal sprays. These claim to work, and I do believe they work as a supplement but not absorbed through the mucous membrane under the tongue or the sinus mucosa. I mean, logically, what makes us think that B12 could more readily be absorbed through the skin, under the tongue tongue, or sinus better than anywhere along the highly absorptive small intestine?!

So, why does sublingual SEEM to work for some??? My, I think, rather valid theory, is that no B12 is actually being absorbed under the tongue. However, unlike digesting a piece of meat where your digestive juices in the stomach first have to cleave the B12 molecule and then immediately it gets bound with an R protein that has followed it down with your saliva ready to do its job. The R protein in the saliva is the first VIP escort that keeps this very special, prima-donna, B12 molecule from being damaged by the digestive juices within the stomach. The IF will bind with the B12 after the R protein is cleaved in the duodenum. Well, with many B12 deficient people that still have IF and thus some of any form of supplementation will work. What the sublingual benefit may do is that as the B12 is dissolved under the tongue, think lots of saliva and R protein, the B12/R protein may bind in the mouth before it gets to the stomach thus protecting more of the B12. But think, virtually ALL of the B12 you would dissolve under your tongue eventually gets swallowed so the uptake mechanism of the B12 in the terminal ileum is the same.

If one pays close attention to the studies, they are not clear whether the participants are those with PA and IFaB or PCab or just B12def. This piece of information is critically missing so it's important to review the methods and participants selection in any study you read. One place to look for a valid study is the nutritional supplementation requirements of those who have undergone a total gastrectomy. These studies clearly include a study pool with zero IF and zero gastric acid (achlorhydria) so they have all the same micronutrient absorption issues that one with an advanced state of AIG/PA will have.

This is a smattering of my research and conclusions I have made from that. Consider this my educated opinion and nothing more.

Hope this helps the discussion some.

Hockey_player profile image
Hockey_player

For some people it works. For others it does not. It worked for me for a few years but then I got to a point where I need injections. The spacing for every 3 months is not enough for a lot of people. I suspect it would work well for someone who was short due to being vegetarian, but I saw a talk by a doctor on a recent posting, and it sounds like it is not enough for someone with pernicious anemia.

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