Folic acid vs. folinic acid - Pernicious Anaemi...

Pernicious Anaemia Society
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Folic acid vs. folinic acid

Suzibelle
Suzibelle

Hi all

Was wondering if anyone with a chemistry bent could explain the difference between folic acid and folinic acid and whether folinic is better than folic for those of us with PA? I've just been to the doctor for my B12 injection and he said that not all of the folic acid is converted, whereas the folinic is but, given that folinic appears to be twice the price of folic (in Australia at least) I was wondering whether that was true and thus worth the additional cost. He also suggested taking 1000mcg daily, which is double the folic acid that I'm currently taking.

I won't even start on his statement that there is proof (somewhere - took him six months to find it) that sublingual B12 is just as effective as injections...

Any feedback appreciated. Thanks.

11 Replies
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The two are different chemically, but both are converted in the body to tetrahydrofolate THF. So they are, biochemically, equivalent. I have no evidence at all (nor, I suspect, does your doctor) that one is converted into THF more efficiently than the other. Besides which, it would be irrelevant as the body doesn't need 100% of the folic acid it consumes to be converted to THF - it just needs enough.

The only time that folinic acid would be preferable to folic acid is if you were taking the drug methotrexate for chemotherapy. This drug inhibits the enzyme dihydrofolate reductase, which is needed to convert folic acid (and the dihydrofolate found in food) into tetrahydrofolate.

Con artists used to suggest methylfolate as being the essential replacement for folic acid. But that myth is getting busted all over the place. Now they are pretending that folinic acid is even better. And all because folic acid is a perfectly good supplement for almost everybody, but it's just too cheap for them to make piles of cash from it.

wedgewood
wedgewood
in reply to fbirder

Thanks fbirder . Great information !

Suzibelle
Suzibelle
in reply to fbirder

Thank you very much, fbirder, that pretty much confirms what I was thinking and what my (very limited) chemistry knowledge was telling me. The doctor also implied that the portion that wasn't being converted was going 'elsewhere' and was potentially bad for the body. I'll assume he was talking through his hat on that one, as well!

Foggyme
FoggymeAdministrator

Hi Suzibelle.

So...another GP who has read some research and now assumes that oral supplements are just as effective as injections!

So...about that research...

1. My understanding is that the research only investigated any rise is serum B12 levels and did not investigate clinical benefits or, in other words, if symptoms were relieved and if effective repair was taking place to all the systems that use B12.

2. Some countries do use high dose tablets or sublinguals to treat B12 deficiency, but only after loading doses via injection...and symptoms are monitored for clinical effect (because they don't work for everyone). Injections are used for those with neurological symptoms (before changing to oral treatment) and those who don't respond to oral treatment (the symptoms come back) are changed back to injections. Swiftly.

3. High dose tablets or sublinguals were used in these trials but these are not licensed for use in the UK so any prescription from a GP will only contain 50mcg cyanocobalamin - enough to treat a dietary deficiency (often experienced by vegans) but certainly not a high enough dose to treat those with B12 deficiency caused by absorption problems (the majority of those with B12 deficiency (from any of the many causes). And most certainly not sufficient for anyone who has neurolgical symptoms or experiences the return of symptoms prior to the next injection.

4. Sublinguals work for some people, but not for others. Very few people here report having a good effect from tablets or sublinguals.

5. The absorption rate from injections is 100%. The absorption rate from sublinguals, tablets, nasal sprays etc. is approximately 1-3%. At best.

6. In the UK, B12 injections are the only recommended treatment for those with neurolgical symptoms, pernicious anaemia or B12 deficiency due to absorption issues. Oral supplements are only (currently) recommended for those with a dietary B12 deficiency.

7. Some GP's in the UK are mistakenly interpreting this research and using it to stop treatment with B12 injections, replacing the injections with the low dose 50mcg tablets (insufficient dose for adequate treatment).

NOTE: The NHS now appears to be buying in 1000mcg oral B12 supplements (and presumably making these available to some - but not all - GPs), but there has been no change to treatment guidelines to suggest that this is an appropriate form of treatment for those with absorption problems.

So...your health care professionals appear to be playing fast and loose with this research.

There are no changes to the current treatment regimens in the UK (as per the BNF, BSCH Guidelines, BMJ Treatment Review, etc.). Some surgeries appear to be trying to sneak in these changes via local treatment regime updates...and these are not inline with any of the current recommended treatment guidelines.

Sadly, this appears to be related to a drive to cut down on costs ('efficiencies') 🤬.

Here's more information about the use of oral and sublingual B12 tablets and the importance of not under-treating B12 deficiency (especially where neurolgical symptoms are present):

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms))

Good luck with your GP

👍

fbirder
fbirder
in reply to Foggyme

Yup, that sounds about right.

I still don't believe I've seen any evidence that shows people with diagnosed Pernicious Anaemia (rather than any other cause of low B12) have been shown to have any positive response to oral B12.

In normal people, the absorption of low doses (1.5 mcg) of oral B12 is about 95%. But, the transport mechanism that takes B12 from the blood to the gut has a limited capacity. I've seen numbers saying it's about 10 mcg in one meal. So, if you dose a normal person with 1000 mcg of B12 (the normal dose for these studies) they will absorb about 10 mcg via the normal IF-mediated, route. And about 10 mcg is about 1% of 1000 mcg. Coincidence? I don't believe it.

I think these high-dose oral studies are being carried out on test groups where a significant number of test subjects have fully-functioning IF.

Suzibelle
Suzibelle
in reply to fbirder

Hi again

Thanks again for the additional information - I also haven't found any case studies re diagnosed PA (which I have) responding to oral B12.

I'd suggest your supposition on the absorption is no coincidence at all!

Foggyme
FoggymeAdministrator
in reply to fbirder

Thanks fbirder...I can't find any evidence either so yep...think you’re right about the test subjects...barely an IF deficit in sight 👍

Suzibelle
Suzibelle
in reply to Foggyme

Hi Foggyme

Many thanks for your detailed response. I tried sublinguals early on after my PA diagnosis (six years ago) but have never found them to be even remotely effective so you can imagine my dismay when this doctor started on about them. He also wants to do a blood test in a month to see where the B12 level is at because he wants to keep it in the 'upper end of the range'... I'll go an print out the articles in your links but, as he is not my regular doctor, I won't be listening to him anyway but will see my normal Dr (who seems to understand better) and discuss it with him instead. Any attempt at changing my current regime will just drive me to SI.

Don't know if it's a coincidence but both this doctor and the nurse who has been giving me the injections are English and (I suspect) ex-NHS.

Thanks again for your answer.

Foggyme
FoggymeAdministrator
in reply to Suzibelle

Sublingual and orals never worked for me either Suzibelle.

Blood test...keeping B12 at the upper end of the range...what utter nonsense! As you know.

All the guidelines state that they once treatment has commenced, no further testing is necessary.

Here's a link to the BCSH Treatment Guidelines..says in there somewhere (sorry, can't remember the page no):

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

Also in NICE Guidelines, as follows:

'Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

However, cobalamin can be measured 1–2 months after starting treatment if there is no response' [i.e. low levels would indicate more frequent injections required / in range levels should not be used to stop or reduce frequency of injections / manage treatment frequency via symptom reduction/eradication]

Link to webpage: cks.nice.org.uk/anaemia-b12...

Hope things go well with your 'normal' doctor 😉.

Good luck 👍

Suzibelle
Suzibelle
in reply to Foggyme

Thanks again for the links - as far as I can see the Australian treatment protocols are based on the British ones so I'll be printing this stuff out as well and examining it closely. Honestly, we shouldn't have to put up with all this balderdash from doctors who should know better...

I'm eternally grateful to this forum and the PAS for fighting the good fight and keeping everyone sane during the battle!

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