High Folate, Low Normal B12

[JHEW0836]

Regarding folate masking a B12 defciency…my folate was 24 ng/mL and my B12 was 252 pg/mL when I asked to be tested for deficiency in January. I was having neurological symptoms such as anxiety, pulsatile tinnitus, tingling in legs and feet. Other symptoms include digestive issues (I believe I have low stomach acid), breathlessness, and heart rate spikes. Because I have no evidence of anemia, and my level is still in the normal range, I’m having difficulty convincing doctors that I have a true deficiency that requires more frequent injections. I am not vegan or vegetarian, am on no meds that would cause my level to be that low, and do not have any other underlying health issues. Iron and thyroid are normal. Only other level that was below range was my white blood cell count.

I have been able to get 12 injections (cyano B12) since January and have been through 3 doctors so far, with the 3rd doctor being a hematologist that I had to beg for four weekly injections before I was yet again put on a monthly maintenance dose (even though I am still symptomatic). None of my doctors are going by my symptoms, only the guidelines they are given which are 4 weekly loading doses followed by a monthly maintenance dose (The first doctor only gave me 2 loading doses, 2 weeks apart before putting me on monthly). I understand guidelines are different for those presenting with neuro symptoms but apparently none of my doctors are aware of those guidelines. Also, I was not supplementing with folate during injections because none of the doctors I saw advised me to, plus my folate was high to begin with. I have not had my folate retested since beginning injections, which has been a concern of mine.

I have a follow up with the hematologist in a few weeks and would like to be armed with as much information as possible. I am always following the posts on here and I am also currently reading Could it be B12. Any advice regarding my folate and B12 levels is greatly appreciated. Also I should note that the tingling in my legs and feet goes away by the 4th weekly injection but comes back before my monthly injection.

[Nackapan]

The note following your b12 test result should help youFolate only needs to be supplemented if you are deficient

Once on injections b12 testing not needed .

Simply state when and what symptoms return at what stage.

Keep a log.

Hope you get a b12 regime that you need.

[jade_s]

Hello again You've probably already seen Sleepybunny's posts, but just in case here is a recent one healthunlocked.com/pasoc/po...

Especially take a look at The Many Faces of Cobalamin deficiency paper, Table 1, Myths.

It's not abnormal to need more frequent injections. And based on neuro symptoms, it seems you need them more frequently that monthly. What Nackapan said! Ideally you want to inject before symptoms reappear.

I would definitely get folate retested. Now that you're getting some B12, folate will get used up. They work together & need each other to their jobs properly.

And regarding masking... in 20 to 30% cases of b12 deficiency, people will have neuro symptoms and never develop the 'anemia' part. So unless you were supplementing folate, your high folate levels probably were not masking the anemia per se. Rather I suspect it was just waiting for some b12 to show up. And/or you have a diet naturally high in folate.

I'm not sure if there are other causes of high folate levels, others will have to chime in.

[jade_s]

I was wondering about high folate / low b12 and found the following. Do you perhaps eat a lot of food that's fortified with folate? The key part here is 'unmetabolized folate" presumably due to low b12. pnas.org/doi/10.1073/pnas.0...

High serum folate as encountered in this study was attributable to high intake of folic acid from supplements and fortified food, which undoubtedly resulted in the appearance of unmetabolized folic acid in plasma (34, 35).

This long paper talks about the consequences of folic acid fortification in foods, though i didn't read all of it cambridge.org/core/journals...

There are a whole bunch of other papers that talk about the risks of supplementing folate when b12 is low, but that doesn't apply to you.

[JHEW0836 in reply to jade_s]

I really appreciate all your help! Back when I had my levels tested in January, the only fortified food I can think of that I was eating was cream of wheat. I would eat it for lunch a couple of times a week because I was having digestive issues.

And yes, I totally agree that I should have my folate level retested as I have had 12 injections since then and don’t know if I have used up the folate that I think was built up due to not enough B12 in my system.

[ktwing in reply to jade_s]

This paper is very interesting - when my late dad was still alive and suffering dementia-like memory problems, a nurse mentioned that his B12 was low, which started my whole B12 journey (for myself too) and after reading about B12 and persuading them to trial him on injections, I mentioned folate to his doctor, but was told 'no, his folate is actually quite high', which rang alarm bells for me as my dad hated green vegetables despite my mum's best efforts and wasn't eating anything fortified as far as I know. At the time I'm sure I found an article that said high folate can actually result from B12 deficiency, but I've never been able to find it again (this was 6 years ago!)

I looked again on seeing this post and did find this from York hospitals, which above the table on page 3 says: 'Serum folate should always be measured with B12; in the presence of true B12 deficiency, serum folate may be elevated' yorkhospitals.nhs.uk/seecms...

Strange that this is hardly mentioned anywhere, so I don't know the truth of it, but definitely it was very strange that my had had high folate when his diet was definitely not rich in it 🤷

[JHEW0836 in reply to ktwing]

Thank you so much for sharing! I have also seen it stated somewhere online in the early days of my online research but have not been able to find it again. To me it makes sense as B12 works hand in hand with folate but for some reason, every doctor I have seen has not connected the dots. I even mentioned it to my neurologist but he just shrugged it off, saying I must eat a lot of food with folate. Which I wasn’t at that time and told him so. I don’t see it too often on here either. Most people with a B12 deficiency are also deficient in folate. Puzzling for sure.

[jade_s in reply to ktwing]

Thank you for adding your story!

I was also sure i had read it somewhere. Maybe it'll pop up at some point.

[Sunnysidoop]

I also have high folate. I don't eat any fortified foods but I do have a reasonable amount of leafy greens currently. That being said, it's been high for a long time, even when I used to eat less greens