Do I need to increase folic acid/folate intake with B12 shots?

[JazzSoprano]

Hello all, I am within one week of taking daily b12 injections as a loading dose. A group on Facebook advise a protocol of taking 5mg of folic acid daily as it is a cofactor for b12. I get that part but I’m checking whether it’s necessary to take such a high amount of folic acid if, prior to starting the b12 shots, I was supplementing with folate at the much lower dose of 400mcg and was 3/4 of the way in the range e.g. 17. Just wanting to check what other people do when taking b12 shots as I’ve also seen research that suggested excessively high levels of folic acid also thwart b12 treatment. There are so many different patient experiences and I don’t want to do anything to stop progress. Thanks all.

[Nackapan]

No you don't need to take 5mg folic acid unless prescribed by a doctor if you are deficient ,which you are not.

200 -400mcg folic acid is usually a sufficient maintenence dose .

Go by your levels from a blood test .

You are right to question this

[JazzSoprano in reply to Nackapan]

Thank you for answering this. It makes absolute sense that they are cofactors but the last thing I want is to upset the applecart by creating excess. I did take the higher amount over the past couple days but don’t feel comfortable about it hence further research and my question here. I have a mind to reduce it back down tomorrow.

[Technoid]

Ah Facebook. It has a lot to answer for.

I have been reviewing some interesting material recently on genetic influences on the folate requirement. In certain cases it seems that doses up to 800mcg may be needed to get good control of homocysteine (this may also be dependent on available Choline/TMG).

The best approach is certainly to increase folates in your diet but if levels are low and you do feel you need to supplement, doses from 200-800mcg may suffice depending on how poor in folate your diet is or if for some reason you have trouble absorbing.

It is possible to get 1mg of folate from the diet without supplementation but some people do not wish to eat significant quantities of whole grains, leafy green veg and legumes, in which case, the folinic acid supplementation may be your best choice.

Many people do use folic acid which seems to work fine but from what I've reviewed of the biochemistry and health outcomes, folinic acid may be superior since it avoids potential build-up of unmetabolized folic acid, which would be a potential risk with very high folic acid intakes.

This facebook group seems to believe that frequently injected B12 "uses up" folate more quickly but I'm not convinced this is the case and have not seen evidence for it. That said, if you eat a diet that is low in folate AND then you don't supplement to compensate, then surely you will run into trouble so this needs a personalized approach.

[Technoid in reply to Technoid]

Interesting talk regarding the genetic influences on nutrient requirements, including folate:

m.youtube.com/watch?v=gkkGu...(Not working as expected?)

[Sea-blue in reply to Technoid]

Just listened to this . All of it. Very interesting . Wish the world in general took more notice of Nutrigenetics

[JazzSoprano in reply to Technoid]

Thanks for your reply. Sounds like you have a mind for the science behind this - I don’t, but the research and other information that I did come across made me realise there are different positions on this. Other discussions on this forum lead me to believe that patients have widely different experiences. On my blood results, I’m inclined to take 800mcg of folic acid, of which one of those is part of a B complex. I only aim to do this while taking daily shots as a loading dose. There are many contributory factors to these things and I believe that genetics definitely can play a part - since I discovered my likely deficiency a couple weeks ago I also learned that several family members bizarrely have the same issue and are taking B12 shots either prescribed or self injecting.

[Bellabab in reply to Technoid]

Its not FaceBook - its Google thats been such a dreadful failure. Who would have though that we could get instant access to all the information available from every single library in the World. I mean what possible benefit would that be for anyone!

Joking aside folate is water soluble so surely any excess would be excreted? Same argument we use for injecting very high B12 doses! Also what harm would a build up of un-metabolised folic acid cause?

Surely any supplementation of B12 requires a complementary increase in folate levels as they work hand in hand. Jab = more B12 in blood so more will react with folate in blood. This is needed for folate and B12 to be used up.

[Technoid in reply to Bellabab]

B6 is also water soluble but (at least in certain forms) can cause neuropathy if dosed in excess for long periods of time. Water solubility is not a guarantee of safety at any dose.

Where UMFA = Unmetabolized Folic Acid

" UMFA can act as either a competitive or non-competitive inhibitor of DHFR depending on the intracellular concentration of dihydrofolate (DHF), which is a folate cycle intermediate generated during thymidylate synthesis (Figure 2) [201]. This inhibition of DHFR can lead to the accumulation of DHF, which is a potent inhibitor of methylenetetrahydrofolate reductase (MTHFR), ultimately disrupting the one-carbon cycle [212,213,214]. As a result, essential reactions in the cycle can be dysregulated, impacting DNA synthesis and repair, as well as methylation processes. Evidence exists to support the use of UMFA as a marker for excess folate in humans, as UMFA levels generally increase in response to supplemental folic acid intake"

from mdpi.com/2072-6643/15/21/4699

B12 doesn't react with folate, it acts as a cofactor for 2 enzymes (something that allows that reaction to proceed at a greatly increased speed), one of which is involved in the folate cycle, another of which is involved in a precursor reaction to the Citric Acid Cycle/Krebs Cycle.

Provision of B12 beyond what these enzymes would normally need does not necessarily mean that there will be an increase in the number of these reactions or an increase in the speed that the enzymes function - they only need as much B12 as they need.

Your body does not have an infinite need or capacity to use the products of the folate cycle or the krebs cycle, they are not going to scale linearly with the availability of some particular "fuel" for these cycles, like B12, things are much more tightly controlled than that, otherwise all manner of problems would arise.

[JazzSoprano in reply to Technoid]

Helpful information, thanks. Puts things into a bit more perspective…

[Bellabab in reply to Technoid]

Thanks a lot - that helps.

[JazzSoprano]

on loading doses, I can see that people also have widely different experiences and the idea of finding a personalised approach sounds like the way to go. I originally aimed for the standard NHS line which is to do EOD for couple weeks but I quickly realised that, initially, every day might be better due to my symptoms. Currently on day 8 of a daily loading dose and will review every couple days to see if I can move to EOD, then weekly etc. I hope I’m not the only one who had to do daily shots at first! 😬

[Enuffisenuf in reply to JazzSoprano]

Don't forget loading continues until you can't see any more improvement in symptoms and don't rush to taper off even then. Make sure that you have some stock, just in case, take it slowly and really monitor how you feel.

I did 6mths (ish) of eod and then started to taper off the SI while using a sublingual supplement. I was hoping to get away from SI completely tbh.

Anyway, my symptoms came back quite quickly, so I'm back to eod for now.

Good luck

[JazzSoprano in reply to Enuffisenuf]

Thanks for sharing that, this can be a lonely journey and it’s helpful to hear what other people did or do. I’m also titrating an underactive thyroid after a time being treated on the NHS - just as with the thyroid, it’s pity that paid and trained professionals don’t seem to know an awful lot about this and pretty much leave it to patients to work it out themselves. Scary but thankful for forums like this. Your answer reassures me it’s probably ok to continue with the current loading dose (with not as much folic acid!) until I get more consistent relief from the symptoms.

[Enuffisenuf in reply to JazzSoprano]

Me too, there is so much cross over of symptoms it's hard to tell what is thyroid and what B12 related.

An endo (said trained professional) recently said he couldn't support my 'self medicating habit' referring to me buying T3 privately, after the NHS revoked it. Habit.....I ask you.😮

[JazzSoprano in reply to Enuffisenuf]

I moved over to T3 only a couple months back as NDT stopped working as well - not converting T4 to T3 at all well. Now that B12 has come to light I’m now questioning whether this was the original problem that affected the thyroid! You’re right, it is hard to tell the symptoms apart. Only a week into the B12 loading dose, and I now suspect that I may be slightly overtreating the thyroid - B12 seems to be affecting how much T3 I need. I’ve read that some people have also experienced this but it’s baffling.

Professionals should stop chastising patients who self treat - instead recognise that we only do so because lots of them fail to do their jobs properly,

[Enuffisenuf in reply to JazzSoprano]

I thought my thyroid was undertreated, hence the endo consultation. For consultation read I mean....... a letter from GP to endo, and one back from endo to GP. It was such an efficient process that my involvement wasn't required at any point. 🤔

I had no idea how low my B12 was (80 where range 200to900,) and as I've been unable to access my test results I'm not sure if my B12 had ever been tested before, or was steadily depleting for years. A lot of the symptoms I put down to thyroid do appear to have been relieved by my 'habit' of treating the things the NHS ignores.

[JazzSoprano in reply to Enuffisenuf]

So you are another person who might have missed low B12 and mistook some of the symptoms for low thyroid too? I’m on day 2 of reduced T3 dose and hoping that symptoms will begin to level out a bit. My heart rate has already gone down a little but I’m watching symptoms very closely due to their overlap with B12. I suspect that B12 will take a while to settle given that I now strongly suspect this was my original issue all along.

[Enuffisenuf in reply to JazzSoprano]

Indeed. I reduced my T3 way before I knew about my B12 issue, because I didn't want them to take my T4 off me completely. I've been on T4 & T3 for well over 20 years, and felt pretty good until they withdrew my T3, I fell off a cliff and have been struggling with my health ever since. I now buy my own.

Good luck getting on top of everything, I'm so much better than 6 months ago, so there's hope for us all.

[JazzSoprano in reply to Enuffisenuf]

Some people just don’t convert T4 very well. I couldn’t even use NDT recently which was a massive change for me. Btw did you know that low B12 negatively affects T4 to T3 conversion? No wonder I got worse with it. I’d like to think that, one day when my B12 is more optimal, I could maybe use NDT or a T4/T3 mix.

[Enuffisenuf in reply to JazzSoprano]

Fingers crossed, B12 definitely seems to be doing the trick for me.

[ReallyWondering]

I'm also a member of that FB group. My folate has always been high, but I was told by an admin in that group to take 5mg of folic acid. I injected for two weeks EOD and I took the folate while I was injecting EOD, but stopped when I went to weekly. I've been injecting at least once a week for months and my folate is still high. Like everything else with this disease, what works for one may not work for another. Unless my folate starts dropping, I won't be taking any folic acid. My doc always tests it, so there must be something to it.

[JazzSoprano in reply to ReallyWondering]

There’s definitely a relationship between B12 and folic acid but, as you and others say, how one person responds isn’t necessarily the same as the next person. I guess I’m not confident to take a blanket rule and apply to myself without seen a solid evidence base to back it up. I am erring on the side of caution though, hence taking the 800mcg just in case. It's great that your folate doesn’t seem to be affected - it highlights how important it is to get bloods done to gauge it properly 👍🏽

[Technoid in reply to ReallyWondering]

"My doc always tests it, so there must be something to it.

B12 allows a critical physiological process known as the folate cycle to run properly. As you might guess, this cycle involves folate being converted through various different forms, producing various products critical for life. This is why, when repleting B12, adequate folate should also be supplied, ideally through diet but if not possible, with supplements. Supplementation is not compulsory if you have good folate status but many people eat low folate diets or may have issues absorbing folate so additional supplemental folate may be helpful in this case. Dosage requires a personal approach but unless there is a deficiency or absorption problem, it probably makes little sense to exceed 800mcg and with very high doses, there may be some safety concerns, especially with the folic acid form.

[scnuke]

An important process that is often left out of some of the FB groups is that you should have your folate levels tested before you start gobbling 5mg tablets every day. If your folate levels are in the upper third or higher of the normal range, there is no need to take that high a dose regardless of how often you inject your B12. 5mg folate or folic acid is for people with deficiency and meant for only a short time until levels return to optimum range. I inject B12 twice a day and take 800 ucg folic acid daily. My folate levels remain well above the upper limits. The preaching of the cofactor gospel is often overstated.

[JazzSoprano in reply to scnuke]

That’s exactly what I thought about testing as it’s the only way to know for sure, and I wouldn’t want to increase my levels to way over the range. Hope you don’t mind me asking, what made you realise you needed 2 shots daily? I’m about 1 1/2 weeks into a daily loading dose and, while there is definitely progress, I sometimes wonder whether I need to initially increase to twice daily or just simply be patient and wait. I’m experiencing some symptoms that I understand are common in the earlier stages, like a semi-return of low b12.

[scnuke]

As you learn more about PA and different treatment routines, always remember that everyone is different. My treatment may well be unnecessary for some and not enough for others. Some symptoms may resolve in a few weeks after loading doses or weekly injections while others may actually get worse, called reversing out. Neurologic symptoms take longer to respond as a general rule. I have been SI no less than once/day for four years and twice/day for almost three. I have tried various other routines since my symptoms of PA began to show back in 2015. It is important to be patient. I still have some symptoms that have not resolved, or even improved to any significant degree. But overall things have gotten much better on two/day, but some things may be with me forever. So yes, be patient and don't be afraid to try different injection routines, and also, don't be too quick to want to reduce your injections. Some symptoms can return very quickly and often take a very long time to resolve themselves again, if ever. Good Luck in your journey. Be wary of FB experts.

[JazzSoprano in reply to scnuke]

Thanks so much for your advice and encouragement. I’ve learned a lot about B12 since discovering it has been a long standing issue with my health - been illuminating and disturbing at the same time. Particularly helpful to be reminded of the reversing out issue, which confused and worried me making me question whether I was doing the right thing with supplementation, but it all fits with what you and others have said. Feeling encouraged to try different treatment regimes too but, like you say, I accept that patience is needed to give the body time to catch up and heal, so I’ll give the daily injection more time and see where it takes me. All the best to you too