Which B vit complex for folic acid?

[SBunyan]

I'm new to all this - reading of 163 and doctor said I'm borderline low and suggested using a spray. I'm going to try Jarrows sublingual and have read I should use a b vit complex for folic acid and wondered if anyone has any suggestions? Struggling to see the folate dose online

[Gambit62 Administrator]

If you are based in the UK I would try going back to your GP and try and get him to formally recognise that you have a b12 absorption problem. Suggest that you arm yourself/write to him with some of the materials from the pinned posts - in particular a check list of your symptoms, the UKNEQAS warning on the dangers of just using serum B12 as a guide to B12 deficiency in the absence of an evaluation and the BCSH guidelines on treating and diagnosing B12 deficiency which clearly state that treatment should not be delayed if there is clear clinical evidence including neurological symptoms.

pernicious-anaemia-society....

pernicious-anaemia-society....

bcshguidelines.com/document...

particularly the summary on p2 and treatment protocols on p8

and you could throw this warning into the mix to discourage them from just telling people to supplement

b12researchgroup.wordpress....

If you can food is the best sort of folate - but you can actually get folic acid much more cheapily from a supermarket - and most people respond quite to folic acid.

[SBunyan in reply to Gambit62]

Thanks I am in the UK. She suggested trying the spray and retesting in 3 months time. She said the lab would refuse to test any sooner. I thought I'd try the tablets under the tongue and see if the symptoms improve.

That said if the symptoms don't I will go back sooner and insist I have further tests. You think I should have more tests before I start injections or just go straight for the injections? She seemed to think I didn't have PA although that was just from a standard blood test for my dizziness.

[Gambit62 Administrator in reply to SBunyan]

Unfortunately - if you have been supplementing as the GP has suggested then this will skew any further tests - regardless of whether your symptoms improve or no. I really would suggest going back and getting a diagnosis of B12 deficiency based on your symptoms - which means educating your GP a bit on how B12 deficiency works.

PA is one condition - an autoimmune response - that will lead to a B12 deficiency - others are gastric surgery affecting the ileum, drug interactions, genetic abnormalities affecting the ileum ...

The actual test for PA - IFA - is prone to producing false negatives - about 50% of the time so that's not a good guide either - if it comes back positive it shows you do have PA but if it comes back negative that doesn't rule it out.

Unless the cause of a B12 deficiency is lack of B12 in the diet - or a treatable absorption problem (not very relevant in the UK but tapeworm from eating raw fish is relatively common in Scandinavia) then the normal treatment would be injections regardless of the cause so personally not convinced of the 'test for PA' recommendation in standard guidelines such as NICE - but I'm not a medic.

The idea with sublinguals is actually that absorption occurs through membranes in the mouth. Even if it doesn't the amounts involved are so large that some people get enough B12 from the 1% of absorption that happens outside the ileum just because it is about 400xRDA that you would be taking in a 1000mcg tablet.

It would be useful to get hold of the exact results of you test - which probably included full blood count. It may be that your GP thinks your B12 levels are low but you haven't actually got a deficiency because you aren't showing any signs of macrocytosis but macrocytosis isn't a defining characteristic of B12 deficiency and isn't one of the first symptoms to occur in around 30% of people who have an absorption problem.

You might also want to point your GP at the area of the PAS website designed for health professionals

pernicious-anaemia-society....

[SBunyan in reply to Gambit62]

I haven't starting taking supplements but obviously keen to as slightly concerned about the implications of being deficient now that I've read up on the subject.

Out of interest what level would you say I need to be at to be 'healthy'? Are you implying from your reply that it's impossible for me to reach healthy levels by just using sprays or under the tongue?

[Gambit62 Administrator in reply to SBunyan]

People vary a lot more than GPs believe when it comes to B12 which is another thing that makes it difficult to say what would actually be right for you, which is why you ... and your doctor need to go by symptoms.

Sorry - just impossible to be specific.

You might get the levels you need from supplementing with sublingual sprays or tablets, but you might also find yourself trapped in high serum levels but not enough at the cell level - functional deficiency - which is part of what the final link in my first response is about

I'm in my 50s and I've had problems since I was about 10 - I don't actually know what my levels were when I was diagnosed as being B12 deficient about 4 years ago - it happened incidentally whilst I was in hospital after fall in which I broke my ankle ... so my levels hadn't been right for me for 40+ years at that point - but I probably wouldn't have been defined as deficient.

I'm at the high end of that large majority of people who respond to high levels of B12 in their blood by blocking it getting through to cells so now I need to keep my levels astronomic or I feel absolutely terrible - basically they come back as being well above normal range and off the top of the measurable range with the equipment that is used to test.

[pvanderaa]

Low is low. You need injections.

Make a list of all your neurological symptoms. Try to assess a severity score of your own choosing for each symptom and ask your GP to include the list in your record.

The GP may treat you like a hypochondriac but you have to stay calm and determined. This is an unfortunate phase many of us have gone through in asking for more frequent injections.

If he/she fafs about, keep updating them each visit on your deteriorating symptoms and on the new ones that appear.

They are looking for evidence for the correct diagnosis so gather it for them.

You will also need this in the future when you find the injection regime is insufficient and you need to ask for more frequent injections.

Once you are on injections, further blood test should show >1500 pg/ml. This is where it needs to be. There no "toxic" level for B12 as it is water soluble.

Continue to monitor the severity of your symptoms and update your GP to build confidence that things are moving, albeit very slowly, in the right direction.

Then get your folic acid and multivitamin sorted out.

[SBunyan in reply to pvanderaa]

Thanks for the reply. I'm reluctant to go back until I've monitored my symptoms for a few more weeks and tried a few supplements myself.

I'm taking 2x5000mg under the tongue but can't say things have improved although it's only been 5 days I think.

One question - does anyone else feel like their top lip is tingling and swelling as soon as they start sucking the tablet?! It's completely bearable but wonder if I'm doing more harm than good?!

So I'm wondering whether I should try the spray instead which is what the doctor originally suggested. Does anyone have a recommendation on product to try please?

I'll monitor things for another few weeks and then go back to the docs. I'm not bad compared to most - mainly slight numbness in digits, slight co-ordination issue (bumping into things) and waking in the night.

That said reading about B12 deficiency does make me wonder if I'm doing hidden damage not addressing the low reading (163) with injections asap.

[pvanderaa in reply to SBunyan]

The nerve damage marches on as long as you have low levels of B12.

It also takes a long time to repair myelin sheath damage - if the axon core of the nerve is damaged, it is thought to be unrepairable. This is to severe to mess about with.

Please try to get on injections asap.