Whilst high dose folic acid is definitely helping me utilise my EOD injections, I think it’s also progressively not agreeing with me so I am going to try methylfolate. However, there seems no information on the recommended dose for supporting injections.
Is anyone else on it, and how much do you take daily? And how has it helped?
This is exactly the problem I've been trying to sort out for the last 4 years. I cannot absorb B12, B9 or iron. I've given up on B12 injections and use a daily sub-lingual replacement and I take daily methylfolate. But I cannot get the balance right and have persistent signs of anaemia. I have consulted 2 haematologists and got nowhere.
I would be interested to hear views/suggestions on this.
I’ve got the added complication that I take ADHD meds also, which give me some of the neurotransmitters that methylfolate is meant to stimulate and can cause issues if the dose is too high.
I’m still debating this morning whether to go for 1mg (playing safe) or 2mg (supposedly nearer a B12 injection supporting dose).
I probably should have posted this earlier than the morning I was planning to start! 😂
Problems as I can see them are a) too much methylfolate makes a person anxious, b) too little available folate makes me anxious. So how can I tell? 🫤😭
Folinic acid, in my opinion, may be a better choice. It's a natural form and not methylated, so may be better tolerated. Unless you are deficient, there's no obvious reason to take more than 400mcg.
Folate is a cofactor for B12 so you need a certain level in your blood to fully use the injections, certainly if they’re EOD. And injections also use up the folate in your blood quickly so if you weren’t deficient before, you can become deficient quickly without adequate supplementation.
But if methylfolate doesn’t work out I will definitely look into folinic acid, thank you. 🙂
For the record I have played it safe with 1mg today. Interestingly, less than an hour later I’m feeling the same calm tiredness that I do about an hour after my ADHD meds. Still got my migraine though. 😡 I shall report my findings. 🙂
"Folate is a cofactor for B12"
"injections also use up the folate in your blood quickly"
Technically B12 is a co-factor for only 2 enzymes, neither of which is folate, but I know what you're trying to say. I've often seen this claim that B12 injections use up folate more quickly but I've never seen it supported so I'm skeptical.
It is not clear that having more B12 available than you need is necessarily going to cause the folate cycle to speed up and use more folate than it normally would. A lot of folks having frequent B12 injections do just fine on 400mcg folate or less so this seems to argue against your thesis.
If there was a 1:1 demand for folate based on the amount of B12 in the system, anyone not taking massive amounts of folate alongside would become folate-deficient. But they don't. So I don't think it follows. If you have come across some research on this I would be interested.
You can get very substantial amounts of folate from a good diet, as much as 1mg (the upper limit), without needing to worry about the right form, dosage or anything like that.
It’s pretty standard advice that folate needs to be kept at optimum levels if you’re receiving regular B12 injections. I haven’t got time to get references now but there’s a lot of stuff out there, plus my specialist very much emphasises how necessary it it.
"It’s pretty standard advice that folate needs to be kept at optimum levels if you’re receiving regular B12 injections."
Indeed, and its very good advice. What I'm not convinced of though, is the need to supplement especially large quantities of folate, unless a deficiency is present.
I've been reading research papers on B12 deficiency treatment and the metabolism of B12 and folate most days for about 2 years or so and I've not yet come across evidence for the necessity of very high dose folate to accompany injections. But there's a lot of research out there so if you do come across one and want to share it, I would be interested.
I've been injecting EOD and taking 400mcg of methylfolate for over a year. My last recent FBC showed folate over the top of the range so folate not being taken up in my case by EOD.
Sadly it was quite evident that when I didn’t take folic acid for a few days on regular B12 injections, I got noticeably anxious and irritable. 😕 So I think I need something.
Some can get a good amount of folate from their diet. I cannot and take 5mg.Folic acid daily at the moment and that balances well with EOD injections of B12. Having run into problems with too little folate I will be adjusting my supplementation while carefully watching symptom change. Deficiency of B12 and/or folate gives very similar symptoms and it makes sense to me that folate intake is matched to B12 intake. Its all a question of what woks as we simply do not know enough about this whole subject as its incredibly complex & tied into many other health problems like gout for example and yes it hurts.
When people inject B12, a lot of that B12 gets excreted quite quickly.
Is there anything in that pathway which affects folate requirements?
Or should we only be considering the B12 which is retained and enters other pathways?
Agreed. I did poorly on methyl folate but do fine with folinic acid sun-lingual tablets. The drops did not work for me.
Versandapo.de have b12 ampoules with folate. I believe it is only available in conjunction with cyanocobalamin not methylcobalamin but might be worth looking into.
Interesting… I might look into it. Problem with that though is you can’t adjust the two doses as needed.
I have tried B9 but quickly dicovered I didnt need it at all . . . Oral is fine with me buy if ye want B9 is available . . . . . .I only take my prescribed B9 5mg oral ever second day and with 5mg injection I could not sleep at all. . . . . You should look up B6 Deficiency symptoms. . . . B6 is required in conjunction with B12 . . . . . . I use B6 near every day . . . . . . . I also use B1 maybe once per week but certainly once every 2 weeks. . . . . . I have been experimenting with B2 also but I dont think it has any effect on B12 rather a few other problems I have suffered for some time. . . . . I suffer from sore neck/throat and excess mucus. . . . . . . . Cannot advise further than my own findings. . . . . . .. . . . . . . . . . . amazon.de/-/en/Folic-Acid-H...
I was advised to take B6 for 4 months on, 2 months off to avoid toxicity. I have just re-started it again so we’ll see.
I must need it then cause I been using it for years. . . . . . The listed symptoms are pretty obvious. . . . . . Toxicity would be extreme. . . . . .
To report back, I took 1mg of methylfolate yesterday along with my B12 injection and normal ADHD meds. It was on the border of too much with the extra dopamine (managable but slightly shakey, plus I hurt my shoulder from being super focused at work in one position 😬) but I can already tell that my joints are clicking less and feeling more secure in their places, and I slept better and woke up feeling alert but relaxed. Tongue is still feeling a bit tingly and weird.
I might end up on something like folinic acid longer term but I am going to continue with the methylfolate over the weekend without the ADHD meds and see how it goes.
I use Folinic acid in liquid form. Less problematic for me. I don’t do well supplementing with tablets
Something that often gets overlooked is the importance of knowing your folate levels in order to determine the best supplementation regime to match your B12 injection schedule. If you are folate deficient, it may be necessary to take 5mg of folic acid for a short period of time. If your levels are in the upper levels of the normal range, 400 - 800 mcg should be fine of most any form. I have been injecting hydroxo or cyano, or a combination of both due to the current shortage of hydroxo) 1mg twice a day for almost three years now and I take 800mcg of folic acid daily. My latest folate level was 396 ng/ml (range 24 - 380) So keep this in mind before blindly taking 5mg daily just because someone on Facebook says it is necessary if you inject frequently. It's not. While folic acid is not inherently dangerous, I found it was not without some side effects. YMMV
I think it’s about finding one’s balance. All I know is 5mg every 5 days obviously was not enough, 5mg every day would appear to be too much and/or folic acid doesn’t entirely agree with me. I agree the problem even with knowledgable people on the internet is that they can’t tailor things based on individual need.
Tbf that is broadly the opinion of my specialist- that everyone has different requirements and there’s often some trial and error involved.
I feel a bit like the state of my tongue is my canary in the mine. Geographic tongue/glossitis was one of my first symptoms and I’m guessing it’s a good way of tracking when the balance of everything isn’t quite as it should be.
Wasn’t sure whether to just update here or start a new post. Methylfolate was no go but I’m several days into folinic acid. Lots of side effects I thought was probably folic acid (my joints feeling more elastic/subluxations, incredible fatigue and the feeling of neurotransmitter uptake being increased, dry mouth, poor sleep, my tongue being all weird again) have all improved already. However I’ve definitely got pins and needles again (not at the height of the folinic acid dose) and what I think is a low level migraine that isn’t budging.
This is what it feels like to be in between a rock and a hard place. 😭
Gp agreed to levo dose increase -and talked about B12 injections!
b12 without loading dose?
Self Injecting of B12
B12 loading doses query 
