Sublingual b12: Hi my B12 was 248 so I... - Pernicious Anaemi...

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Sublingual b12

Soozysoosop profile image
8 Replies

Hi my B12 was 248 so I have taken b12 sublingual 10,000 per day for a week. I feel so much better today all my spinal pain has gone I am able to walk fine and my head feels clearer for the first time in months.

I was about to start self injecting and my b12 has arrived but unsure what I should do? Typically I have my neurology appointment on Monday. I also have a haematology appointment in a few weeks. My GP refused to give me a trial of b12 even though when I took the pa checklist in I ticked loads of boxes.

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Soozysoosop
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clivealive profile image
clivealiveForum Support

Personally Soozysoosop and I'm not a medically trained person but I think you will need to be open and honest with your neurologist and haematologist.

Make a list of all your symptoms, score on a scale of one to ten how bad they were and how much improved they are now after supplementing with B12 and present this to them.

I'm glad you are feeling better and wish you well

Soozysoosop profile image
Soozysoosop in reply toclivealive

Hi I will be honest but am surprised I have seen an improvement with sublingual. Is this route normally this effective

clivealive profile image
clivealiveForum Support in reply toSoozysoosop

The reason P.A. patients have to have B12 injections is because they are unable to process B12 via their stomach.

It may be that you are "fortunate" to be able to absorb enough from the sublinguals to produce the improvement you have - but as I say I'm not medically qualified.

It would be a good idea to try to identify why you had/have low B12 levels in the first place

Soozysoosop profile image
Soozysoosop

But will supplementing with b12 tablets not prevent diagnosis? Or is that just if you self inject

fbirder profile image
fbirder in reply toSoozysoosop

Yes, supplementing with sublinguals in amounts sugpfficient to fix symptoms will hinder diagnosis.

But I think most of us here would be happy to have no diagnosis if it meant no symptoms.

Gambit62 profile image
Gambit62Administrator

The amount of B12 you are taking each day is extremely high - about 4000x RDA

Some B12 is absorbed passively outside the ileum - probably somewhere between 0.1% and 1%. Also an absorption problem in the ileum doesn't necessarily mean that there is absolutely now absorption there.

Say you have just 0.1% of the B12 you are taking being absorbed in the gut outside the ileum. That would mean that you 4xRDA would be getting into your blood. if 1% is being absorbed then 40 x RDA would be getting through.

As fbirder says being symptom free tends to be the top priority for most people.

I started using a nasal spray whilst I was waiting for my phials to arrive from Germany and was amazed at how well that worked - was using it 3 x a day - went from struggling to walk to actually being able to perch at the top of a ladder and prune my grape vine in the space of 3 weeks. Unfortunately there hasn't been much by way of studies in respect of efficacy of other methods of delivery beyond injections - though what is out there does indicate (as does my experience and yours) that they can be effective for people with absorption problems.

The theory with sublinguals is that they are absorbed through membranes in the mouth - nasal spray membranes in the nose and skin patches are another route some people find effective - not sure what the indicators are on absorption through the skin but sublinguals tend on averaged to be 1-2% and nasal spray about 3% - so neither is anywhere near as efficient as injections - but if the doses are large enough then they can work.

JMN2017 profile image
JMN2017

Soozysoosop

Would you post exactly what sublingual product you have been using, please? That is, if you are happy to do so ;) I'm hoping, since sending my GP a letter, to get treatment but it would be good to know what is worth trying should he not agree to treat me. Many thanks

Soozysoosop profile image
Soozysoosop

Hi I used solgar methylcobalamin 1000mcg and bought it on Amazon it was about 8 pounds. People on this forum also recommend the jarrow one. The only reason I used this was I had ordered it several weeks ago and as I was waiting for ampoules to come from Germany decided to give it a trial. Just worried now as although my symptoms have improved I have my neurology appointment tomorrow I thought it would take months so in some ways wish I'd waited. Thanks for that information gambit 62 it's so informative .

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