I wondered if someone could give me some advice on my folate levels. I am self injecting every day. The doctor initially prescribed daily injections for 3 weeks and after those 3 weeks we had another appointment and my neuro symptoms had not subsided - so he recommended for me to continue daily injections.
He advised to take 1mg folic acid as my folate level was 13 (Initially) he said it should be between 15-20.
A week ago I had my bloods tested again and my folate level had risen to 30. I only see the doc again in a week… my thoughts were to stop taking the folic acid tablet and just take my b-complex which has 0.400mg folic acid in it… or should I stop taking that too for a while?
This is my 5th week of daily injections and I have now noticed that the tingling and pins and needles in my feet and hands has subsided. However, I now have an odd numb sensation in my foot but it seems to come and go.
What are your thoughts about the folate?
Many Thanks!
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DiNL
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No medical qualifications but 1mg daily seems a bit high to raise folate by such a small amount. I wouldnt have advised beyond 400mcg folic acid and then retest after a month. Between 200mcg and 400mcg is usually considered safe but if this brings you overrange I would even moderate that. If there is isnt an absorption problem I think its safest to boost folate levels in the diet. folate == foliage 😁
Thanks Techoid. I have stopped taking it and will just supplement with my usual b-complex (which has it in there) and my diet. Appreciate your response.
With folate that high you could even consider stopping the folate supplementation for a week or two before resuming at a more reasonable level like 200mcg-400mcg. Its good to have folate in the higher end of the range but I wouldnt go overboard as I have read papers that suggest that very high folate might interfere with or reduce active B12. Sufficient folate is important but I wouldn't want to take anything that could interfere with my active B12. Consider discussing with your doctor before changing the dosage.
Yes I think that’s the best. I will be seeing the doc next week and think it’s fine to stop for the next week at least and then see what he says…. But I am pretty sure he will advise to reduce my daily injections and I agree with that as my neuro symptoms have almost gone now.
It's great your neurologist put you on dailh b12 regime. Refreshing to hear.
If you do reduce I woukd do it very slowly.
I think in Hindsight I reduced from every other day too quickly .
I will never know now but without really realising was under pressure to 'succeed' in needing fewer b12 I jections to fit the 'accepted ' guidelines of regime.
2 monthly.
I never reached that .
3 weeks was the furthest apart I had them.
I then had big set backs.
It's what you need personally to keep as well as possible.
Sorry too hear your plight however im in uk we cannot self inject it seems that thetes an imbalance re your b12 not b9 you should have two different blood tests away from your gp as due too my experience my Gastroenterology consultant prescribed one and gp blood tests are just guidelines everyone is different re levels if you vam find a different doc too petform full blood count its seems you not digesting your foods get back too me if you wish as im on 8 weeks b12 injections 2 folic acid a day 5mg each and vitamin d 3 times a day the b12 plus too much folic could create too much calcium. Cheers your welcome 🙏 it all comes from gut etc
Hello, I was diagnosed with Folic acid deficiency and was prescribed folic tablets (1mg). However my Dr. did not mention that I was Vit. B12 deficient. So, three months later I was getting seriously worse(symptoms, forgetfulness, problems regulating temperatures, could not control my emotions, especially crying and many of the other usual B12 Def. problems). So I had labs done, sure enough my B12 was 255. I later checked online and read in books that anyone 60 years old or older should have a B12 lab value of 1,000 or more. So Dr. also did not mention to me that things like caffeine may keep you from absorbing B12 (some disagree with that, but I was drinking 2-3 cups each morning, so I stopped). Then after more research I learned that the best form of B12 to take is Methylcobalamin (it's the natural form). I had my labs rechecked 3 months later, but the lab did not check for Vit. B12 levels. So that was something you must stay on top of (remember it's your body and who cares for your body more, lab techs, doctors, or you?). I have now taken to writing up a note to the lab techs when they draw my blood (posted below) and I give it to them each time my labs are done. I also finally convinced the doctor to give me loading does of Vit B12 (Cyanocobalamin) for 6-8 weeks then once a month for couple months. Now I'm taking the B12 sublingual (Methylcobalamin) ordered on line. Anyway, you have to keep up with your own values to stay on top of a B12 deficiency. So I learned that if you are deficient in folic acid a doctor should suspect a Vit. B12 deficiency also, they usually go hand in hand. Think of peanut butter and jelly, 007 and Bond, or Batman and Robin, you get the point. What I can tell you is that you need to do your best job of researching and reading about Vitamin B12 Deficiency. You may already be aware of the following 2 books, but they are Could it be B12, by Sally M. Pacholok and Jeffrey J. Stuart and What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency. These two books will enlighten you a lot. Good luck. And remember, most doctors know about as much about all of this as you do, or at least once you read the books. Again, good luck to you and I hoped I may have helped at least a little. Mr. Justatip.
I HAVE A VITAMIN B12 DEFICIENCY!!!
Please Test my B12 correctly
The following are what is needed to be tested for; patient’s name here,
DOB 01/01/1910, MALE; PLEASE TEST FOR ALL THE VALUES LISTED BELOW.
My last lab results did not test for any of the vitamin B values, even though that was the doctor’s order and the main reason I had my labs done.
I have a vitamin B12 and Folic acid deficiency, so please do not forget to test for the values of all the following:
All the B Vitamins listed below
Vitamin A and B1 B2 B3 B5 B6 B7 B9 B12
Folic Acid (B9) Iron Vitamin C Vitamin D Vitamin E Vitamin K
Zinc Lead Testosterone Cadmium Estrogen TSH Potassium
Calcium Chloride Carbon Dioxide Hemoglobin A1C CBC RBC and lead
Quote: "I later checked online and read in books that anyone 60 years old or older should have a B12 lab value of 1,000 or more. So Dr. also did not mention to me that things like caffeine may keep you from absorbing B12 (some disagree with that, but I was drinking 2-3 cups each morning, so I stopped). Then after more research I learned that the best form of B12 to take is Methylcobalamin (it's the natural form)"
None of these things are true. I already provided references regarding your claims about coffee but since you don't seem to want to read studies which contradict your preconceived ideas I wont repeat them here again. You could at least reference your claims so we could see if they check out or not. Disagreement is fine but if you don't provide any evidence for a claim which contradicts most of the available evidence, why should anyone believe it?
Its true I disagree with what you say, but whats more important is whetger there is any evidence for the claim that coffee reduces absorption of B12. You havent provided any, while I provided a study that contradicts the claim. You say you can find studies that claim anything if you look hard enough and that is often true, but if you look at the preponderance of the evidence and at higher quality evidence it gives you a good picture of what the current science says about a topic. In this case, that evidence contradicts your proposition that coffee reduces B12 absorption. You have not provided a single useful reference that contradicts that at all. I could not find any reputable source making such a claim either.
If you want to stop drinking coffee and you feel better without it, thats great if that works for you, but making claims that it might stop someone from absorbing B12 are completely without foundation.
There are three "natural" forms of B12 used in the body - methylcobalamin, adenosylcobalamin and hydroxocobalamin. They are all converted to the base cobalamin molecule before being used in the body. There is no such thing as the universal "best" form, as some people react badly to certain forms (like methylcobalamin) and not others.
If you find methylcobalamin helpful, or you feel it alleviates symptoms better, thats fine but that doesnt mean its the best form for everyone - that claim would have to be backed up with some fairly substantial evidence for anyone to take it seriously.
Instead of telling us what you "learned" with no references, why not pose a question about a claim instead? Like "Hey, I read X claim in this book of this paper, what do you think?".Many people do this on the forum and its a great way to learn and get the opinions of others. There are many folks here with many years of experience (a lot more than I) who can provide useful insights into most topics relating to B12. It is no shame to pose a question that explores some topic on which you have read confusing or contradictory claims.
Then we could all discuss the claim in a civil way, bounce it around, see if it checks out and seems plausible or not. There are grey areas and we are all learning this stuff as we go along. But your style of making universal claims without references and then pooh-poohing any evidence to the contrary while providing nothing to back up your own claims is not conducive to the process of learning and sharing experiences here.
Sharing a personal experience, like I felt great when I stopped Coffee. ok, thats great. But making universal claims about Coffee's affect on B12, the right B12 serum level for older adults and the "best" form of B12 are all substantial claims that require substantial evidence. So far, you've provided none. I hope in future you will pose more open questions instead of making bold but unreferenced claims which you then refuse to back down from, despite the preponderance of evidence against your claim.
Apologies for going on rather long, but I find it aggravating to deal with somebody who puts forth misinformation without evidence and then refuses to examine anything that contradicts it.
OK, I started reading this, but seriously I am B12 and folic def. However, I am not into defending positions, arguing, trying to compete with someone, approving or disapproving, debating and the like, etc. etc. I am not a scientist nor do I care to spend hours on any forum. I only passed on some advice that I've learned since diag as B12. I don't get into arguments, who's right whose wrong. I've read caffeine interferes with absorption of folic/B12 while some sites said no, most I read did. I have no need nor time to post all the sources I've read. Furthermore, I did not see where everyone on this site always or must post sources nor does this forum require it (as to my knowledge). If anyone is irritated or angry about what I post or disbelieves it, so be it. I can always stop posting which I probably will anyway. Just a Tip; this is also why I stopped using Facebook, twitter and the like on social media platforms. Thank you.
I appreciate you are B12 and folate deficient and am sorry to hear that. Most of us have gone through (and are still going through) through similar health struggles here. Most of us are not scientists, including me. We are all here to learn, to sympathise and share personal experiences.
But if you pass on advice that has no evidence behind it, you should not be surprised when its challenged. You dont need to post sources for everything you say but if you do make a claim which seems to have no support, its good form to either defend the claim with evidence when its challenged with reasonable evidence to the contrary or withdraw it. If you want to instead just relate a personal experience that X worked for you, thats no problem. But you should not be shocked if someone challenges a claim that you make when there seems to be no support for it. Why should any claim be beyond criticism?
There is a lot to learn about B12 deficiency and no-one understands everything about it. But the only way we can all learn more about it is by sharing experiences or looking at research and discussing it. It doesnt matter who's right or wrong. The point is to provide good advice to people with B12 deficiency and that cannot happen if we cannot challenge any claims that someone makes. I understand its uncomfortable when someone challenges a statement you make but is there anywhere in life where you expect to make unsubstantied claims and no-one is expected to challenge them?
The reason I challenged your claims was because they are not just personal experience but rather claims that X is the best form of B12 or X reduces absorption of B12 in the body. These are important factual claims to anyone who is B12 deficient - if they were true, perhaps we should all be taking the form of B12 mentioned and we should all avoid drinking something that would reduce B12.
I dont think of these conversations as an argument, but a discussion. Through discussing evidence for a claim, we get closer to seeing whether a claim has any basis or not. Thats important to know so we can can all better help ourselves and others. I am not seeking to cause offense or aggravation and I have no personal animosity towards you. I apologise if it came across that way.
Its important for all forum members to know whether universal claims have an evidential basis or not. We all want to treat our deficiency is the best way we can. Sharing personal experiences is helpful. But when it comes to making more universal claims we need to look more carefully to find whether there is any support for that position. Because if so, perhaps we should all consider following the advice! So its important to know if theres any evidence behind it so we can all help ourselves and others get better. Its about a responsibility of care.
I respect your experiences on this journey but I don't see that we should have to accept your claims without comment or criticism when they seem not to accord with evidence. As long as its done in a civil way, which I have tried to do. I appreciate you dont want to defend your positions for whatever reason but that doesnt mean they are thus beyond criticism.
I would suggest that if you dont want to discuss or support any claims you make that you stick to providing personal anecdotes instead. No-one can or would challenge a claim that giving up coffee made you feel better, or methylcobalamin worked better for you. Those are all important and interesting anecdotes to add to the pot. You can also ask a more open-ended question about a claim you read and it can be discussed to see whether there might be something behind it. Many people do this. You don't have to stand behind a claim and battle to the death to defend it just because you read it on some website somewhere - why not just have an honest and open discussion about it?
But if you claim something more universally applicable about B12, you should not be surprised if its challenged. I have been challenged on various things, sometimes I was right, sometimes I was wrong. Its not about that. Whats important is whether everyone ultimately arrived at a better understanding of B12 so we can help ourselves get the best treatment we can and and not be diverted or even harmed by claims that have no factual or evidential basis.
I dont wish to offend or cause any upset, but I do believe in open, honest discussion of claims of universal applicability regarding B12, with the aim of improving health for all forum members.
I just happened upon your reply here and you have worded everything really well and I totally agree with both your posts Technoid. Critical thinking and being challenged in a constructive way , seems to have flown out of the window now. You are right about people making claims and not backing them up. It is a very helpful forum and long may it continue. I would be worried if unsubstantiated claims weren’t challenged including if I made some . Which I would like to think I wouldn’t. Nothing you have said was offensive in the slightest . Thankyou
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