How much folate for how long?

[BirgitteG]

Hi 🌞 I would happy to receive some advice 🌞

I've been using b12 sublinguals for about a year now.

I started out with 1.000 or 2.000 mcg a day (with probably an ok folate level). I don't know what my b12 level was, as my gp at the time didn't find it necessary to know, as my red blood cells had the right size (maybe because of of the large doses of folate in the b-complex I had been taking?) I didn't take more than 800 mcg of folate at that time, but soon had to supplement with potassium to be able to keep myself upright.

After about 5 month nearly all of my many symptoms had gone (the ones I've had for decades persisted, but I can live with that) - and I thought I would be able to cope with 1.000 mcg b12 once or twice a week (400 mcg folate a day). It soon turned out to be wrong - or maybe the sublingual drops I had purchased didn't work properly, or it was because I only took methylcobalamin and no adenosylcobalamin for the next couple of month. My symptoms came back.

I started again with sublingual tablets, and this time 5.000 - 8.000 mcg a day (as I had read that we only absorb 20-25% from sublinguals) plus 5.000 mcg folate (and sometimes extra potassium, but I might need that because of the levothyroxine I take and not because of the b12/folate working). I take methylcobalamin and adenosylcobalamin, have tried hydroxocobalamin, but that is rather expensive. Don't really know if I could tell any difference....

A few weeks ago I bought folic acid instead of folate, as it is cheaper. After a week or two I felt symptoms creeping back.... I have now started folate again and spend a lot of money. Apparently I can't make use of folic acid?

My question now is - how much folate do you need in the long run? Can there still be healing processes going on after (this time) 5 month?

Reading posts on some of the b12 Facebook groups (that don't accept any other views on sublinguals than 'they don't work, period!' - why I was kicked out...) has made me aware of the fact that some people need injections every or every other day to keep up a decent level, while others are feeling ok whith i e a monthly injection. That must me due to reabsorbtion issues. As I have a huge amount of parietal cell antibodies, I might have other digestive issues and that could be reabsorbtion issues as well. In that case you'll need b12 every day. Does anyone know how much b12 I'll have to take on a daily basis when my symptoms are gone again - and how much folate?

I would be really grateful to get some views on that ❤

Oh, and let me share a real life story with you - an endocrinologist at a hospital in Edinburgh told me that it was impossible to have any symptoms of low b12 unless you had been a vegan for more than 10 years...... 🤤😵😱 We agreed on not seeing each other again (for her part because I didn't want to stop taking any supplements at all for the next 3 months) - but I pity her patients......

[fbirder]

5000 ug (5 mg) of folate is a very large amount and would normally only be recommended for somebody with a severe, diagnosed, deficiency for a short period to get levels back up to normal. After that 400 to 800 ug a day should be enough.

Everybody can make use of folic acid. Some people are only about 30% efficient at converting it to methylfolate; but that's about 9% of the population, and most of them just make extra enzyme to get around the problem.

There's no need to take methylcobalamin and adenosylcobalamin as they are treated the same when they get into the cell. The cell removes the top ligand (methyl, adenosyl, hydroxo, cyano) to produce cobal(II)amin, which then goes to the bit of cell where it's needed and have the required top ligand (methyl or adenosyl) put back on.

There was an erroneous entry in Wikipedia a while ago that said adenosylcobalamin was needed if you supplemented with methylcobalami. That entry has now been corrected, but it was repeated lots of times in poorly-researched web articles.

If you do have PA (and high levels of anti-GPC antibodies suggest it as a distinct possibility) then you'll absorb about 1% from sublinguals - on average. Many find they make no difference at all.

If you do have PA then you really should be having injections. The problem is that your self-treatment has probably got your blood levels really high and without serum B12 levels fairly low no doctor will prescribe the jabs.

You could consider self-injection with hydroxocobalamin as you should be able to reduce the amount and frequency and cost.

[BirgitteG in reply to fbirder]

Thanks for reading my post and for answering. It looks interesting with the methyl/adenosylcobalamin issue. What I don't understand, though, is why hydroxocobalamin is converted into two different kinds of cobalamin, then? Well, have to find some information about that.

Well, my symptoms started to come back when I only had folic acid for about a week and a half - and anyway, if I don't need all that folate after all, I'll have enough for a long time 😉Nice to know that you don't need that much when your symptoms have gone.

What you write about absorbtion and PA (which the GP I have now think I have - and he actually offered me injections, but I'm rather sure I would have to supplement anyway) is correct regarding oral supplements - but the b12 in sublinguals is absorbed through the mucous membrane (only 20-25%, though, that's why I take the amount I take) and therefor not dependent of Intrinsic factor 🌝

Kind regards and thank you again!

[fbirder in reply to BirgitteG]

After being taken into the cell all four of the common cobalamins are converted into cobal(II)amin. I guess that it makes it easier to keep the right amounts of each if it can convert methyl to adenosyl and vice-versa.

Here's a paper that explains it - ncbi.nlm.nih.gov/pubmed/258...

Many people doubt that the B12 molecule can get through the mucous membrane. There are two good reasons.

Molecules that easily pass through such membranes tend to be small and hydrophobic (water-hating). B12 is fairly large and hydrophilic (water-loving).

Saliva contains a protein called haptocorrin. This will grab hold of any B12 molecules in the mouth. It's job is to protect dietary protein from attack by stomach acid. It will also prevent any B12 it does grab from being absorbed.

Some studies have shown that sublingual B12 and oral B12 have similar amounts absorbed - about 1%. And that's an average.

I, and many others, find sublinguals do nothing for me at all. Nor do patches or sprays. Others, however, swear by them.

[BirgitteG]

Well, it certainly did something for me! I had dementia symptoms (that was scary!), balance problems, urin incontinence, swollen tongue, weakness, trouble breathing, could hardly get around etc etc when it was at its worst. The symptoms got worse for some days, one at a time, when I started supplementing, and then disappeared. I must have absorbed some of it - what a later blood test showed as well. When they came back (apparently due to too little sublingual b12) the first symptom to show was incontinence, then memory and concentration problems, and then the balance problem. The same happened this time, with the folic acid.

After all, if it increases the amount of b12 in your blood it must be absorbed? Some people have told me I shouldn't have supplemented, but insisted on another blood test, and now it's too late to have one, as the supplemented b12 will show in the blood. When I answer that the supplement obvious have solved my problem then, they say the b12 from sublinguals only show in the blood, but doesn't get into the cells. 🤔🤔🤔?

Thanks for the link - looking forward to learn more about it 🌞

[fbirder in reply to BirgitteG]

Well, the simple explanation is that you don't have PA, or any other absorption problem.

What leads you to believe otherwise?

[BirgitteG in reply to fbirder]

Getting more and more symptoms, symptoms getting increasingly worse over a couple of years, in spite of a diet rich in b12 and a b-complex with 200 mcg b12 a day for years?

GP offering me b12 injections because of my autoimmune atrophic gastritis?

[fbirder in reply to BirgitteG]

Why have you not taken up the GPs offer of injections?

[BirgitteG in reply to fbirder]

Because I am pretty sure that an injection every 3 month will not be enough anyway.