Just watched the Cytoplan video with Dr David Morris and he mentioned the folate trap, which I've seen mentioned on here
When I was first diagnosed with B12D and extremely low folate, I was told to take 5mg of folic acid for 6 days before starting the B12, because my folate was so low.
Would this have affected my chances of absorbing B12 in any way? Can someone explain the folate trap in layman's terms? I'm probably overthinking but worried I've scuppered my recovery in some way.
They do say to start with B12 first and introduce folate later over on the thyroid forum. I was also recommended to have Methylfolate and not folic acid, which is I believe more bioavailable. (I have the MTHFR genetic mutation that means I don’t methylate correctly so makes sense for me). Sorry I find the science a bit brain bending so this so my generalist take on things. I don’t suppose it matters if you stop and restart, I took folic acid 20 and 22 years ago for both pregnancies as recommended at the time. Hope that helps 🙏
Thanks. I've seen a lot of people mention the MTHFR gene. How did you discover you had the mutation?
Weirdly it was through doing ancestry which hubby bought for Christmas a few years ago. I discovered you could download your dna in a txt file, then find the ‘alleles’ and RS number associated with MTHFR and hey presto there it was, the mutation can’t remember which way round it was now but I have it written down somewhere. I have a few, I found DIO1 and DIO2 and also the BRCA2. I was referred to Birmingham genetics unit for something else and when I mentioned the ancestry DNA they said ‘can you send the txt file we are also interested’ 🤣
I believe this has come about due to the fact if folate deficiency is treated before testing for b12 taking folate/folic acid may mask b12 deficiency. There is also much debate about the MTHFR gene, so much so 23andMe no longer report on it in in their dna reporting although they state "Some very rare variants in MTHFR can cause a severe condition called homocystinuria, which affects fewer than 1 in 200,000 people in most ethnicities." blog.23andme.com/articles/o...
However from what I have read, being homogeneous for both rs1801133 and rs1801131 would possibly be detrimental. I am G/T (minus allele hence A/C) for rs1801131 only which SNPedia suggests may possibly cause impaired folate metabolism.
Wow that’s impressive - good work sleuthing that out. Isn’t it amazing what we can learn 👏
I study little else! Be interesting to compare notes.
Once you start B12 replacement, you would quickly be out of folate trap unless something quite unusual like a functional deficiency is involved.
More people have an MTHFR variant than do not and the presence of the common MTHFR variants does not mean you need to avoid folic acid. They metabolise somewhat differently but folate recycles through various different forms in the folate cycle so taking one form instead of another doesn't make as much difference as one might expect by just glancing at a one carbon metabolism chart.
This is one of the better explanations of folate trap I've read:
firstclassmed.com/articles/...
Extremely high doses of folic acid have been theorized to possibly cause functional folate trap but this has not really been properly tested.
Starting with B12 first and then folate is less to do with folate trap but mostly because of a concern from some very old case studies about aggravating neurological damage. It's a longer discussion but I think this fear is unfounded and based on a fairly small evidence base from when B12 deficiency was not recognized at all and was treated with mega dose folic acid (like even more than 5mg) WITHOUT accompanying B12 replacement.
23andMe don't report on MTHFR because experts in MTHFR agree that, outside of serious MTHFR disorders usually seen in infancy, MTHFR testing provides nothing more useful than a serum folate test would provide so its generally a waste of time and money.
Thanks for the concise, yet detailed explanation! 🙂
The “folate trap” is a situation in the body where a lack of vitamin B12 causes folate (or folic acid) to get “stuck” in a form that cannot be used properly.
Folate and vitamin B12 work closely together to help make red blood cells and support healthy nerves. Without enough B12, folate can’t do its job properly, and even if you have plenty of folate, it can’t be used by the body the way it should. This leads to a problem where, despite having enough folate, you can still end up with symptoms of a deficiency, such as tiredness or anaemia.
So, the folate trap is essentially caused by a B12 deficiency, which prevents folate from being used effectively. It highlights how important it is to have enough of both B12 and folate for your body to function well.
For Example:
For pregnant women, the “folate trap” can be particularly concerning because both folate and vitamin B12 are crucial for the healthy development of the baby, especially in the early stages when the brain and spinal cord are forming.
Folate, in its usable form, helps prevent neural tube defects, which are serious birth defects affecting the baby’s brain and spine, like spina bifida. Pregnant women are often advised to take folic acid supplements for this reason. However, if a woman is deficient in vitamin B12, the folate might get “trapped” and not work properly, even if she is taking enough folic acid.
This means that B12 deficiency during pregnancy can indirectly affect how folate works, potentially increasing the risk of complications like neural tube defects or anaemia. It’s important for pregnant women to have enough of both B12 and folate to support their health and the baby’s development.
That’s why some health care providers may check both B12 and folate levels during pregnancy and may recommend supplements if needed.
Thanks. All makes sense now! 🙂
The genetic abnormality resulting in methylation issues is real. It is not the same as the one that is rare and shows up in infancy. The methylation issue is 1 to 2% and NOT rare. DR Morriss is correct and those that contradict that science are incorrect although confident. There are other experts that actually promote healing that do not follow only information applicable to those that choose a vegetarian diet and have to supplement to keep from being ill on that diet.
Methylfolate (Methyl B9 and not other forms of B9 ARE required by some of us to heal regardless of how confident others are.
just as an encouragement about folate - I’ve only been taking 500mcg on injection days (EOD) for about 3 months now and my folate just measured at 54 pmol/l which is more than adequate.
I know everyone is different but if you find you aren’t tolerating the 5mg folate, and your levels are now stabilised, you could probably get by on a smaller dose.
Thanks. My folate levels were really low (2.6pmo/l) when I started self-injecting 5 weeks ago. I'm interested to see my latest blood test results this week!
Hello, it’s interesting that you’ve been informed your reading is low. Mine recently read 1.6 and was told this nothing too worrying and given 4 weeks of 5mg tablets (folic acid). I have been IM self injecting B12 hydroxocobalamin for 3 years because 1 ampule monthly was insufficient. I’ve had extensive bowel surgery 15 years ago but this doesn’t explain me recently developing folate deficiency.
I’ve started injecting a B12/folic acid compound and am too awaiting blood test, so mine will be interesting. There was no reason for developing in regards my diet and I’m assuming my bowel surgery is far too historic to be relevant to B9 absorption. So I’m not sure what to do about my GP being “not too concerned” because my symptoms have been significant.
Any advice from people on this thread would be greatly appreciated. I should also say I have fibromyalgia and of late treatment resistant herpes simplex 2 both of which I feel are related but I don’t know how or why.
Thank you to everyone that has posted on here, the folate trap document is very interesting.
If there’s anyone who buys a folic acid/B12 formula that is hydrox instead of cyanobobalamin could they let me know because my muscles aren’t tolerating the cyano compound I have very well. Deficiency symptoms are easing though.
As someone who had an odd and (after a few months) pretty awful response to folic acid and who is homogeneous for one of the two main MTHFR mutations, I would say don’t assume that you’ll have problems with folic acid but do keep checking in with your body and your bloods. I wish I had listened to my instincts quicker. In hindsight, signs that everything wasn’t right was just how quickly I jumped from folate deficient to above range (2 weeks - I suspect much of it was UMFA), how early on I got simultaneous signs of folic acid overload and deficiency, and as time went on how my hypermobile EDS significantly worsened and my neurotransmitters felt dampened (there is a scientific paper which describes increased neurotransmitter reuptake as a sign of too much folic acid in people with my mutation). But I do well on a smaller dose of folinic acid.
I think MTHFR is a big unknown atm. There are a lot of people who talk dubious rubbish about it and I wouldn’t trust Ben Lynch as far as I could throw him. But there is scientific literature out there making tentative links to certain symptoms and conditions, for example it’s been hypothesed to play a role in hEDS. I’ll never know but I wonder if COVID did some sort of epigenetic switch on my MTHFR or another gene involved in methylation, as everything got so much worse afterwards. 🫤
Mindful Squirrel - I totally agree with this post, I am another who has problems with folic acid and have only started to recover fully when I worked it out!
That's interesting. I've tried folic acid, but didn't get on with it, and methylfolate made me a bit anxious, even on 800mcg, although I did generally feel better than the folic acid. I've been taking 5mg folinic acid every day, but am convinced that it's partly responsible for my anxiety and for me generally feeling a bit crap. I also wonder why I need to keep taking 5mg of it when my folate levels are off the charts (or is that the folate trap?). I have started injections every day for a few days, but still wonder why I need to keep topping up with such huge amounts. Where did the 5mg of folic acid requirement originally cone from?
Is the 5mg a recommendation from a doctor? I’m not going to go against any medical advice but just regarding my personal experience, I have ended up settling on less folinic acid on injection days (between 1200mcg and 1800mcg). My doctor who originally suggested 5mg has been happy with that.
Up until a few days ago I was also taking a B complex with 50mcg methylfolate, which was fine for over half a year, but I’m taking a break now (at least on my actual injection days) as my joints started feeling bad on those days, plus some other weird symptoms. Or maybe it’s the methylcolamicin in it? 🤷♀️ Either way, requirements change over time and I thought it might be worth experimenting with some of my cofactors. I imagine it’s feasible that if my body has now replenished its B12 stores and has an excess that the methyl has become a bit much for it.
I think its mythology. If you were folate deficient it's a common treatment dose, but you are not. I never found a source explaining the 5mg ( and I've read a few things about B12 deficiency treatment). The response is usually that folate is important for B12 to function. It's actually the other way round but the point is rather, why this amount? I don't think there is a good reason. And if your folate is off the chart I would drop it for a week and see if you feel any better. This far into treatment you would not be in folate trap unless there was a severe functional issue. Its not impossible, but its unlikely. Keep food folates high.
Thanks. My big problem is almost total loss of appetite for the last 3 months, so getting any natural folates or B12 is proving a challenge. Had a spinach omelette with salad tonight and that was about as much as I could manage, so artificial sources of folate/B12 will have to do for now. By the way, how often do you test your folate levels once they're 'adequate' assuming you keep on injecting?
Not sure theres any agreement on that tbh! Hope your appetite returns a bit when the stress starts to come down somewhat. Poor appetite, especially long term starts to contribute to nutritional inadequacy and your gut microbiome will then also be getting grumpy which becomes a feedback loop that needs to be broken.
Why is folate so important?
Folate deficient but am I b12 deficient?
Is my low folate causing B12 to be low. .New to me and I'm a bit lost!
B12 & Folate Deficiency and tolerability of antibiotics (why I react badly to them)
