I have PA. I had covid three times last year. I was settled on B12 H every couple of months for years but got the old neurological symptoms back after organising a busy charity weekend. Definitely B12. Unco ordinated. Couldn’t get my words out. Unbalanced. Couldn’t focus or concentrate or even co ordinate cooking a simple supper.
Saw a private Dr with special interest in iron and B12 and on 7 December had an iron infusion ( F was 21 with long history of much lower), a B12 H injection and some Vitamin D, K and Magnesium patches to use once a week for 24 hours.
I’ve always injected into my deltoid muscle but this Dr taught me to inject subcutaneously into my stomach and to take folic acid 5mg with each injection. Has that made a difference I’m wondering ?
The plan was to inject once a week for at least a month and then once a fortnight and try to stabilise at once a month. Everything makes sense and I did ok with half a folic acid tablet with injection but a whole 5mg made me anxious. For days. Does anyone know why or what to do?
I tried half a patch with the vitamins D, K and Magnesium and some thiamine & vitamin C and managed 6 hours but removed it because was getting a strong burning sensation over my whole body and facial flushing. That’s continuing.
I’m very aware that for optimum health I need not just B12 but also folate, and the vitamins.
Can anyone advise is it usual when loading B12 to get this burning sensation or is this caused by the vitamins? Will more B12 help?
I’m over the co ordination etc symptoms but I’ve got this burning pain, mild anxiety which feels physiological ( I’m not anxious about anything ) and exhaustion/weakness. Definitely feeling weak
Any re assurance or steer on whether this is to be expected is very much appreciated
Thank you
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My experience of burning sensations is that they relate to an increase in homocysteine. I'm not a doctor or a medical person, but I believe that heat in the body, skin, hands, feet relates to this amino acid. And the lack of B12 is why it's there.
So if you're burning after injecting, it could be the nerves waking up and healing - destorying the homocysteine. I could be completely wrong, but that's how I make sense of it.
Nowadays, I don't feel any burning and have weekly injections. I think the burning for you may be because your levels are dropping, which is increasing homocysteine but at a latent, unnoticeable level. Then, when your body gets B12 it starts the 'fightback' against this amino acid and that's what feels like burning.
Again, I'm just posting a theory. Am in no way a medical person.
" this Dr taught me to inject subcutaneously into my stomach and to take folic acid 5mg with each injection."
Unless you have a folate deficiency or severe absorption problem this is very poor advice. Yes you need folate for B12 to be effective (along with several other things) but most people either get enough folate in their diet or with a supplement of up to twice the RDA (400mcg folic acid). 5mg is 25 times the RDA and 5 times the tolerable upper limit. It's not surprising most people don't do well on such a dosage. But its a common recommendation from some corners of the internet and even some doctors. I call them the "5mg Folic Acid Cult".
But there is no medical or biochemical basis for it. None whatsoever. It is the dosage needed to treat a folate deficiency, short-term. Thats it. No folate deficiency? no need for 5mg folate. There is no physiological basis for needing 5mg of folic acid with every injection. B12 does not "use up" folate proportionally to the amount of B12 taken. Otherwise those who inject twice daily (there are some) would be massively depleting their folate and would by this logic need to take huge folic acid doses to compensate.
But they aren't, and they don't.
Your folate level should have been checked before starting treatment and then somewhat regularly afterwards to ensure you're getting enough. Many take up to 400mcg daily to ensure their levels stay topped it - it is possible you may need more if you have absorption issues but this should be based on labs and not a blanket, open-ended dosage.
Private doctors who recommend 25 times the RDA without recourse to tests and vitamin patches set off all my alarm bells. Most trials of such patches find that very little or none of the substance actually reaches the blood. If you want to try magnesium, why not just use tablets? Up to 200mg is normally a good magnesium supplemental dosage.
Dont use supplemental Vitamin C - in large doses it works as an oxidant, not an antioxidant, much better to just get it from food sources. Supplemental Vitamin C also doesn't help with shortening colds, contrary to popular wisdom.
I'm not surewhat might have caused the flushing but if it appeared following use of the patches I would suggest to discontinue them.
If you need further reason to be careful with folic acid, there is this:
"We hypothesize that excessive intake of folic acid depletes serum holotranscobalamin (holoTC), thereby decreasing active vitamin B-12 in the circulation and limiting its availability for tissues. "
Thank you very much for this reply. It’s helpful and intuitively what I felt about it. My folate was in the upper quartile - I eat a good diet - but the Dr felt that I have autoimmune PA. I can’t seem to take either methyl folate or folic acid without anxiety so I’ll rely on food sources and just have my level checked annually. Do you think more B12 will mop up any excess folate that floating about? Now I feel just weak. And there’s the burning which is improving slightly …
Do you think the subcutaneous H B12 injections are ok or should I go back to IM do you think ?
hi there I can’t really comment on the vitamin patches, but I have been doing SC injections for several years and I don’t notice any difference from IM injections. I think most people on here who self inject do SC as it’s easier….. (and I find less painful)
Please note that having a B12 absorption problem increases the chances of also having a folate absorption problem but it doesn't mean that you will have a folate absorption problem. As Technoid says, 5mg is the dose for treating a folate deficiency. |It isn't a dose that would normally be prescriped for maintenance unless the folate absorption problem is severe. I agree with Technoid that the prescription sounds excessive and potentially dangerous if it wasn't off the back of tests showing that you were also severely folate deficient.
High folate in B12 deficiency might be caused by folate trap - where folate is trapped in one form because B12 is necessary to move it into the next form in the cycle. This would mean folate levels would drop slightly once treatment starts and folate starts being used normally again. Thus some moderate folate supplementation (200-400mcg) could make sense for the first couple of weeks treatment but after that I would rely on labs as to whether its needed or not. As Gambit mentions, a folate absorption problem would mean more folate needed to be taken but if your folate is already high it suggests to me you probably dont have an absorption issue.
In general folate supplementation of 200mcg (multivitamin) or 400mcg (recommended for women of child-bearing age) are both safe dosages but if you have a very high folate diet and no absorption issues, these might even be unneccessary (although likely not harmful).
Thank you Technoid and others for very helpful replies. I’ve stopped the folic acid and the vitamin patches and the burning is less and the anxiety is less but still there. I’m feeling weak. Is more B12 at say once a week likely to help or will it somehow reactivate the 12.5g of folic acid I’ve taken in the past 4 weeks?
Folate/folic acid being used is a good thing, in fact a great thing. Many of the problems of B12 deficiency are caused by the slowing or arrest of the folate cycle.
The folate cycle needs to work properly for DNA synthesis and repair and neurotransmitter synthesis :
Without a properly functioning folate cycle DNA is not repaired properly (and your body is always incurring damage from activity and/or toxins that requires repair). Without proper neurotransmitter synthesis your mood/thinking will be negatively effected among other problems. B12 is not toxic and there is no risk to trying a higher frequency to see if it will help you.
Thank you Technoid. I was feeling fine until I took the 5mg Folic Acid with the B12 injection. Then I wasn’t fine and felt anxious. If I take more B12 is it likely to help? Or might it make me worse? Will this feeling just wear off in time? It’s been over a week now. Receding but still there and a feeling of slightly weak legs although I’m making sure I walk every day. Really appreciate your input
It's hard to say but if you need the B12, you need it. Methylcobalamin can cause anxiety/insomnia for some but that's not typical with Hydroxocobalamin or Cyanocobalamin. Leg strength may take a while to improve - I'm a year in and can now cycle and walk for decent distances and speeds. Contrast to the day after my first injection where my forward motion was that of a 95 year old and it took a month before I could walk more than 100m. I had a lot of muscle damage and that takes a long time to rebuild (but not so bad as nerves).
TreeSong2023,
Either will work, just use whichever one causes you the least side effects and don't go overboard with doses you don't need. Just remember that B12 should be corrected before taking folic acid/folate. Typically folic acid supplementation is delayed until 24 hours after the first injection.
So I’m doing slightly better but I’m weak especially legs. I’ve been on B12 hydroxy injections for 10 years but got a bit low as was only once every 2/3 months. Then I had iron infusion and B12 once a week for past 6 weeks. Now I’m just weak. Is this to be expected ? And what to do? Does the weakness mean I need more B12 or might it be that I’m deficient in something else? My folate and D have been tested and are OK
I'm not sure tbh. Is the leg weakness a new onset since upping B12 frequency and iron infusions?
10 years is a long treatment period and if the frequency was adequate, I would suspect that in that time, any damage from B12 deficiency that could be repaired, would have been.
Yes, the weakness is since the iron and B12 and folic acid. I think I wasn’t having enough B12 before but now I’ve had a lot of iron and B12 and my folate is fine in blood and I’ve had some folic acid. Maybe something to do with getting in balance?
Only objection I have to statements that you don't need folate unless deficient is that we don't accept that kind of reasoning for b12. Clearly people may benefit from b12 even if the blood shows no deficiency.
That is quite true and to be honest, I have no idea why this is the case with B12 but hopefully someday there will be a better scientific understanding of why that is.
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