After realizing that all my neurological symptoms of B12 started with folic acid vitamins, I opened the packaging of my vitamins and saw these warnings.
This is not to say that folic acid created b12 deficiency. I probably had it all my life with being tired, dizzy, etc. It’s only to say that my intense neurological symptoms appeared with folic acid.
These are 5000 mcg tablets, yes?
Those warnings only apply to those very high doses. It's why some FaceBook groups are highly dangerous as they say that everybody having B12 supplements needs 5000 mcg a day.
I would post that Patient Information Leaflet - except that I am banned from that group for doing similar things.
No, this folic acid vitamin is only 1mg or 1,000 mcg. I was cutting it in half and taking daily 500 mcg on and off.
What do you mean that you are banned? Would love to hear the story. 
Mayo Clinic also says to not take folic acid if you have pernicious anemia. The wording on the folic acid instructions photo that I posted and the words of Mayo Clinic are seeming to say that we should not take it ever. Even if we are back up to normal b12 levels??
I don't know if their warning is because pernicious anemia people can be b12 deficient or if their warning is that at ALL times pernicious anemia people should not take folic acid.
MAYO CLINIC
Folic Acid (Oral Route, Injection Route)
Other Medical Problems
The presence of other medical problems may affect the use of this dietary supplement. Make sure you tell your doctor if you have any other medical problems, especially:
Pernicious anemia (a type of blood problem)—Taking folic acid while you have pernicious anemia may cause serious side effects. You should be sure that you do not have pernicious anemia before beginning folic acid supplementation
mayoclinic.org/drugs-supple...
That would be bad advice.
If you do have pernicious anaemia then you will have low stomach acid. And that can cause problems with absorption of folates - especially folates in food. ncbi.nlm.nih.gov/pmc/articl... The folates in food come attached to multiple molecules of glutamic acid. Before the folate itself can be absorbed these glutamate molecules need to be detached. Low stomach acid can hinder this process. Folic acid supplements to not have all those glutamates attached, so they are absorbed much more easily than natural folates'.
Looking at it more closely - it says
"Do not take Folic Acid tablets and tell your
doctor if you have:
Pernicious Anaemia"
By which they mean - Do not take until you have told your doctor.
Yes, there is some evidence that very high (more than 1000 mcg a day) doses of folate supplements can exacerbate the neurological effects of a B12 deficiency. However, once that deficiency is being treated then normal doses of folic acid should be fine.
I was only taking 500 mcg per day. I stopped for about 1 month and my neurological symptoms subsided. Then i started again and it flared badly.
I might just be a weird case!
Ah. I assumed you were in the UK, where only 5000 mcg tablets come with a Patient Information Leaflet. I should have looked closer to see it was from Saudi Arabia.
Are you getting B12 injections? I didn’t see that any where.
Are you keeping a logbook of meds, food and symptoms?
The side effect neurological symptoms you have been experiencing for folic acid might be from healing of nerve damage. Repair of neurological damage can very counterintuitive.
I took folic acid early 2019 and the neurological symptoms appeared. It could be a coincidence but i don't think so. And according to the packaging - if you are b12 deficient, you should not be on folic acid.
Then I was diagnosed with pernicious anemia and took b12 shots for the first time in life in June 2019 and all the neurological symptoms went away immediately.
Yes - I'm keeping a crazy detailed logbook with meds and symptoms in an excel spreadsheet and color coded so that it appears as a heat map. With cumulative, 7-day, and 14-day rolling averages on my b12 shots that I can compare to my symptoms. I'm really seeing trends now.
It sounds like the symptoms you are having are from the repair. B12 and folic acid work together but it looks like folic acid triggered it for you.
Normally, if you can call anything normal, folic acid masks the neurological damage from the B12 deficiency. That why they have the warning. Once you are getting sufficient B12, your other reserves get used up, like folic acid, minerals like potassium and metals. That’s why you need to supplement with a daily multivitamin and folic acid.
Google “methionine loop” to get a picture how everything fits together and B12 sits at the intersection of the folate loop and the methionine loop.
The repair of nerve damage is thought to only help repair the myelin sheath and once the axon is damaged, the nerve is gone. But repair is very slow if at all possible, any upset in B12 and it’s like it gets eroded faster.
Exercises, slowly gentle range of motion, helps stimulate the nerves. You may grow new nerves as well.
Swimming is a good all around exercise. As your body repairs, you naturally try to do more and feel tired which seems worse.
You really only notice that a symptom has disappeared after you have a set back and it returns. This is what the logbook can tell you when you look back and realize a symptom has stopped.
The logbook also helps with short term memory loss, which is one of the more typical neurological symptoms.
I found that I felt like I was on a roller coaster ride after I started on hydroxo B12 injections over the Three month period. Similar thing were occurring when I moved to the USA and switched to cyano monthly injections.
I’m now self injecting weekly cyano and with daily methyl sublinguals to fill in.
I found that the roller ride interfered with monitoring progress until I compared day 1 after the jab to day after the previous jab ( or day 1 after a jab six months earlier). Then I really saw the pattern and the improvements. The symptoms in the first 3 to 4 days after the injection are illusions brought on by the nerve repair. They appear to be just like the same symptoms that were showing up before the jab when I was becoming deficient again. Very counterintuitive.
Hope you can recognize your “good” symptoms from the repair as well as your “bad” symptoms from the deficiency.
Pain or hunger are my two main “good” symptoms
Thank you pvanderaa for your post, this has made sense of something that was happening after my B12 injection! I felt quite rough for a few days following the injection, since having injections more frequently the symptoms are not as intense and don't last as long. I have recently started taking 400 micro grams of folic acid after getting some advice on this group. I also discussed this with my doctor before starting the folic acid, the advice from group members was most invaluable though. I am still battling to get the right treatment though.
Thank you Andrianna for starting the topic, hope you feel better soon!
So you did not take folic acid ?
I hear if you have neuro issues with b12 then in order fir b12 to work then you needed to take it alongside ?
It’s so daunting
Are you better now did you inject daily ?
Any issues still ? How long did you inject ?
How do you keep up your folate levels ?
As they say b12 uses it up quick ?
Hi There,
I am living proof that high levels of folate mask the symptoms of a b12 deficiency...that was before injections. I had no symptoms at all until I started blacking out completely. (This was all through a natural diet) Doctors were stunned when I came back with diagnosis of pernicious anaemia at 19 many many years ago.
You might feel ok but the damage is there and happening and then boom the body can’t cope anymore. I was super fit!!
But if you don’t keep your folate levels up whilst on injections then you will not get the benefit out of them. I am also proof of that. I crashed in my mid 30’s whilst on injections and could not figure out what was wrong. It was years and with the help of the group that it was finally figured out that my folate was extremely low. (My doctors never even mentioned folate) In recovery still after years of damage from low folate. A little 400 will not really do any harm to most but I have found I require 5mg (5000) to keep me good.
Every body is different and unfortunately we all have to find what works for each individual. But as the nerves repair and switch on I would expect some initial discomfort.
The leaflet is warning (correctly) for you to inform the doctor to highlight the relationship between the two.
It’s not about not taking folic acid if you have pernicious anaemia. That would be a very bad idea leading to problems.
(In fact before I found out about the relationship between b12 and folate I used to joke that the best I ever felt in my life was when I was pregnant. The most stressful thing a woman’s body can go through. Now I realise it was because you are given folic acid when pregnant!!)
Just some experiences that you can feel free to accept or reject as you see fit. You know your own body best.
Wishing you well
Hi Everyone!
Thanks for the great advice and clarification.
So I guess I need to watch my folate levels now. So you are all saying that since I'm getting B12 shots...that my folate might drop? And the reason is because B12 and folic acid work together?
No. Having B12 injections does not increase the body's requirements for folate beyond the amounts needed by anybody else.
Having Pernicious Anaemia can hinder the absorption of folate from foods, so it is a good idea to take folic acid if you have a non-dietary B12 deficiency.
Checking on my understanding of Folic Acid
Folate/Folic Acid daily supplement.
More Folic Acid Safe?
