Short version: TOO MUCH FOLATE. Taking 5mg folate a day as advised by another group has been making me ill. Has this happened to anyone else?
Long version: I have B12D with neuro symptoms. Whether this is functional due to my coeliac disease or a missed PA diagnosis I don’t know. B12 injections gave me my legs back. I was doing ‘ok’ on 8 weekly injections - I’d get a few nasty symptoms back before each jab but coped. Then I had major surgery last year and the anaesthetics decimated my B12 and I had horrific neuro problems. Cue going through the neurology work up again to find nothing wrong so they said ‘FND’ which I wasn’t satisfied with as they didn’t accept B12D could make you this unwell. I asked for more jabs and was declined. Tried a few extra private ones and it was like a miracle. Now I SI. Have been doing EOD and finally after 5-6 months my legs are returning to normal. I have felt really ill in myself though - terrible joint pain, fatigue , insomnia, generally like I’ve been poisoned. I’ve been taking 5mg Folinic acid as per a B12 FB groups advice despite having very high folate naturally as I’ve a good wholefood diet. They told me just to keep going despite feeling sicker and sicker. Interestingly I’ve had to stop all supplements (except B12) for a blood test and I can feel my body starting to feel like normal. Can I presume that it was the folate? It will be interesting to see what’s all my levels come back as, which I’ll know in a week or so. Has anyone else fallen into the trap of being told you need folate when you don’t and feeling unwell taking it? Why is this group so insistent about it? They were very helpful in other way.s. Thank you.
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MrsTuft
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It sounds like myself you have also been labeled with FND.
With regard to the folic acid I am prescribed 400 mcg twice daily by my hematologist with no il effect. It was some time after the prescribing of folic acid I were diagnosed with B12 deficiency. From my understanding you need both levels around the same margin but dont quote me.
It could be due to your coeliac disease that your unable to tolerate it.
Yes I’ve had multiple deficiencies with my coeliac disease over the years but not folate!!
And yes FND is ‘functional’ in that it’s not an organic disease they can classify like MS, but I don’t believe it’s a thing especially as B12 injections had fixed my neurological problems.
My last neuro was pro B12 as he was deficient himself but my new one doesn’t believe it. 😫
FND is crossed responce signals within the brain - all in the head which is totally different to the functional symptoms of B12.
It is also an easy download for consultants to dismiss patients and lighten their load. What a shame to have lost a consultant who suffered B12 deficiency who understood the condition.
I never understood the 5mg obsession, it made no sense to me. Some substantial extra folic acid in early treatment makes sense to escape folate trap but once that stage is past (< 1 month), no reason to take 5mg daily unless treating a deficiency or an absorption/metabolism issue. I felt a lot better when I stopped even the 700mcg a day I was taking for months after starting treatment. I now just take a 200mcg methylfolate in my multi. I have no absorption issues and my folate went well over range on the 700mcg daily. Also my diet is basically folate, folate and more folate🙃
I didn’t understand it either especially as my folate has always been top of range due to my diet too. So there are other B12D sufferers who do well with frequent injections and don’t need extra folate? I’m sage to not do it? The other group implied it wasn’t safe or wouldn’t work…
Theres no reason that frequent, even EOD or daily injections would cause so much more folate to be consumed that such a massive dose of folate would be needed to compensate. I think they dont understand B12/one carbon metabolism. Pumping more B12 into the system will not make the folate cycle spin faster and faster, consuming more and more cofactors - these processes are all well controlled by the body. Other than unlocking folate trap in initial treatment, or treating a deficiency or absorption issue, dosages in the 400mcg range make a lot more sense and have a demonstrated safety profile, unlike 5mg a day. I dont have absorption issues so I dont even take 400mcg, but PA sufferers may have different requirements and should check labs.
Bear in mind 5mg is a dosage that is 25 TIMES the RDA. (400mcg DFE - dietary folate equivalent is 200mg folic acid)
They may well be insistent, but that doesnt mean they know what they're talking about or that their advice is safe (I would suggest it is not). Fortunately I dont have Facebook so I've never encountered this group.
Thank you that’s helpful, so I’m safe to do ED or EOD B12 injections and not take extra folate if mine is high range and I feel better that way? Once my neurological symptoms are as good as they’ll get I’ll look to experiment with finding the right frequency to SI - any tips there? I am trying to build my ferritin as that was low and that has helped how I feel.
I'm not medically trained but after discussing with a doctor I would certainly drop down to at least 400mcg for a time. If you're absorbing well from a high folate diet, you might even need less, 200mcg a day or I think nackapan only takes the occassional 200mcg. But we are all different so one size doesnt fit all. But I would definitely not stay on the 5mg daily, unless you have an absorption problem, I dont think that kind of dosage is safe except for short periods in specific circumstances.
In relation to folic acid but not food, methyl folate or folinic acidic. I wasn’t taking folic acid but Folinic, however I did not feel good on such high amounts. Can’t wait to see what my red cell folate blood test comes back as…
MrsTuft, you're not alone. I tried going up to 1.5mg and I was having lot's of unpleasant symptoms including extreme insomnia, feeling like I was crawling out of my skin, joint pain, night sweats, increased emotional volatility, and when I would sleep I had nightmares so bad I woke my partner up. I don't take any B9 vitamins currently. Methylfolate gives me symptoms even at a does as low as 400mcg. I hope you feel better soon.
I feel like the 5mg suggestion is arbitrary and I couldn't ever get a really good answer from people promoting that dose as to why it should be so high other than "B9 activates B12." To a certain degree it is true that B9 and B12 work synergistically, but nowhere have I been able to find evidence that the ratio should be 1:1 or even 2.5:1 (5mg B9 every day to 1mg B12 every other day).
My best advice is listen to your body if it's telling you "too much!"
Thank you so much for replying. I’m glad to meet someone it had exactly the same effect. The joint pain was the worst and strangest for me. That it’s stopped as I stopped taking it is confirmation. And no I couldn’t get a reason why from that group; just ‘you just do’ and ‘it activates B12’ but my thought was if I already have high levels then surely that’s enough?!
I actually made a post similar to yours about B9 issues essentially asking "Am I crazy?!" Someone (maybe someone in this thread! lol) said something about they had my same symptoms and also discovered they had somewhat abnormally low cholesterol as well as naturally high folate.
My folate was somewhat high when I got it tested over a year ago, but I had been taking methlyfolate for a while at that time so I don't know what my baseline is exactly. I didn't get my cholesterol checked, but I did see research articles talking about how B9 is known to lower cholesterol. I have poor nutrient absorption (documented by low vitamin levels, osteopenia and a celiac diagnosis) and it makes me wonder if my body doesn't do an efficient job of storing needed fats either. Just another kernel to ponder I suppose. Does low cholesterol equate to joints more prone to pain? We need a certain amount of fats to keep joints happy and inflammation at bay.
Yea, especially if you already have good folate levels the advice is confusing at best. More is not always more! Haha
That's interesting to me that you have celiac too. I wonder if because of that additional risk factor and lower nutrient absorption, it makes it more likely for people to react strongly to B9?
I feel like I also read something about certain people being more sensitive to B vitamins, people who tend towards not wanting to eat meat because of an amino acid or some nutrient they are more sensitive to that can cause increased anxiety, etc. Sorry I'm blanking on what nutrient it is and where I read it. Part of why I bring that up is because the article also mentioned those people tend to have high energy and get basically all of their B vitamin needs met by dark leafy greens. Like, they may have a gene mutation that makes them sort of super B vitamin utilizers. That was the impression I got.
I definitely need and like meat, but I do feel like I can get over B vitamined... B9, B6 and B12. Sometimes I even get a bit jittery or itchy if I have too much chard or collard greens.
I was diagnosed with folate deficiency a while back. Was given the standard 5mg a day for 3 months. About 6 weeks in I started to feel really ill. My GP tested me again and my levels were off the scale. It took a couple of weeks after stopping for me to feel ok again.
Thank you for replying. That’s so helpful. And you were actually deficient! I started with high levels 🤦♀️. I’ll post back on this thread when I have my blood results. I’m not going to take it anymore. It’s good to know you felt better in a few weeks. Thanks again.
I have suspected PA but not confirmed and si eod for a few months. My folate is a good level (I have a diet that promotes this) and I only take 400 mcg of a good quality Methyl Folate on the days I inject. I check levels every 3 months and always good so far👍. Like you, I wasn't happy about taking such a large amount of folic acid, as suggested by a fb group. I do have joint and muscle pain but think this may be due to lowish Vit D.
I did the same, as was advised that I needed a good level of ferritin, so supplemented for a bit with ferrous fumarate (not every day). Now my ferritin is a bit too high but not a problem they said lol. It's a juggling act to keep everything in balance and keep yourself well. Hope you improve soon
Bless you, try to stay positive. You have had some improvement so keep going and I will too. A lot of my neuro symptoms have gone, which is great but the first thing to come back on my 3rd day is the fatigue and balance, plus blurry . Its going to be a while I think, as others have said. Thank goodness for this wonderful group!
Thank you for sharing that. I’m still having severe migraines dizziness and fatigue but my legs are better. I hope it continued to improve for us both. X
Sorry to interrupt Redrobbie5 you caught my attention saying that every 3 months you check your Folate levels. How do you do this? Is it by Gp or a home testing kit?
HI and no probs at all. I live in Spain, so have private tests here, or with Medichecks at their clinics if I'm over in England visiting. I have annual comprehensive tests once per year here via my gp. I don't like taking my own blood in case I mess it up,...
hi. I don’t know if this will help in any way and of course each person is different and needs different amounts of everything, but I thought id reply to your post, just in case it might help in any way as I’ve had a constant battle around deficiencies for years. I developed b12D 6 years ago, of unknown cause, I just don’t absorb it at all. My iron and folate were low, replaced, then dropped, replaced… this went on for years. I was tested for PA (runs on the family) but intrinsic factor was fine and the GP refused to test for other types of PA that occur further in the digestive tract. I was diagnosed with Addisons last year and luckily have an amazing endocrinologist. He said that when the body stops absorbing/being able to deal with one vitamin, the mucosa gets more and more damaged over time so you start finding other deficiencies. He said he sees it happen all the time in coeliac patients where gluten is the first problem and then the mucosa gets more damaged over time so you start finding more deficiencies. He found I’m also not absorbing vits D and K now too and said because of the b12D, my b12,folate and iron need to be kept as high as possible all the time. Whether that’s related to the Addisons I’m not sure, but he did say the b12,folate and iron all need each other to work properly. My iron and folate, for years now, have dropped, been replaced, dropped, replaced ….. so maybe at the moment your folate is doing ok and your iron just struggles periodically , which is how mine was for years. But that in the future it might be that due to the mucosa getting more damaged over time, you start to find you do need more replacement of folate and iron. I’ve now been diagnosed with Ehlers Danlos (which causes gastro probs) and malabsorption syndrome where they think in addition to the damaged mucosa, I also now don’t have the right enzymes any more for my body to process and absorb the vitamins. I don’t know if the information will help but I’ve battled for 6 years to get to this point, where it’s all starting to be unraveled and sorted out. My advice would be talk to a consultant about your coeliac and b12 issues and maybe discuss the info I’ve mentioned, even if it’s just to test for other vitamins to see if you have any other deficiencies etc or to have the b12, folate and iron checked every few months to see what’s happening. If for now your folate level is tested as high and is staying high through your diet, then there’s no point over loading your system with excess. If your iron only struggles periodically then replacing it only when necessary is also fine. But they need to be monitored every 3-6 months just to keep an eye on them. If your b12 was decimated by your operation, it might be that you need to have the b12 loading doses again to boost your levels back up. GP’s seem to think that b12D symptoms don’t start until your blood levels are so low they’re in critical (189 or less) but my endocrine consultant accepted my neuro symptoms occur if my b12 drops under 350 and the GP wouldn’t do the loading doses until the consultant pointed this out, ending 6yrs of arguing with the GP’s! We’re all different and our bodies process and absorb things differently so the fb group saying everyone needs to replace folate if you have a b12D isn’t true, your need all your levels checked and monitored so they can work out what YOUR body needs specifically. I just thought I’d share my journey in the hope it helps you on yours in some way and maybe anyone else that reads this too. I’m not a doctor but I’m a qualified Occupational Therapist who’s been on one hell of a journey so far. I had to change GP surgery as it’s the GPs at the previous surgery who just wouldn’t listen or test for anything but my new GP surgery listen and sort things out. I hope you find the answers you need.
Firstly thank you! Secondly who’s your endocrinologist?? My iron and getting have been low my whole life due to coeliac disease and endometriosis- I’ve bled to death for 35 years. Now I’ve had a hysterectomy I’m hopeful I might be able to get my levels up. And yea over the years I’ve had strange malabsorption issues - I even once had such low vitamin C I was at risk of scurvy - and I eat fruit and veg all day! I’ve never had any explanation or help with it so I think I’m just resigned to testing my nutrient levels myself regularly and keeping on top of it. 🤷♀️ x
Hello there ...this happened to me ....i was so ill on folic acid i took a blood test and my folate levels where 45 .....they argied massively that 5 mg a day was what o needed ....theres a whole lots more to b12 deficiency ....no two people are the same ....genetics come into this more than those sites realise ....mthfr gene means definatly no folic acid ....
Thank you for your support and helpful reply. I too have one copy of MTHFR and avoid folic acid. In what way were ill on folate? Did you get talked into it too by a FB group? I can’t believe I went against my instincts. 😫
I am currently going through living hell from folinic acid. Had loading jabs which did indeed drain my folate, despite having a high folate diet and reasonable folate to begin with.
Anyway I saw on the group that 5mg a day was needed. I panicked that I had induced a folate deficiency through loading jabs, and proceeded to take 3.2mg, 4.8mg, then dropped it to 800mcg daily for 3 weeks (whilst pausing the B12). Well, I have never, ever ever been more unwell in my life. The symptoms weirdly crept up, I stopped all folate supps after about 3 weeks, but the symptoms remained. Horrific insomnia to the point of needing sleeping tablets (never needed them before), constant severe headache, pins and needles that I didn’t even have before this, unable to tolerate leafy greens or gluten without severe psychiatric symptoms, feeling extremely agitated all the time and crawling out of my skin. Several trips to A&E where they scratched their heads and told me it wasn’t possible to overdose on a water soluble vitamin. My serum folate went from 8 to 47 after 3 weeks supplementing, and the repeat test was 2 weeks after stopping folate.
It’s now been 6 weeks since stopping folate and my symptoms are so severe, my 60 year old mum is having to look after me, along with my partner but he needs to keep working. My natural folate levels are around 13 when not on any supplements. After much research, it looks like excess folate acts like GLUTAMATE, it requires a glutamic acid to be added to it in the body and THAT is the reason for horrible side effects in most people. Hence the side effects people get from too much reduced folate (folinic OR methylfolate) and less so with folic acid because most people’s DHFR enzymes can’t actually convert much folic acid into active folate, so their high serum results are probably mostly UMFA, rather than active folate.
I’ve recently started daily B12 injections as I think my only hope is for the B12 to use up the excess folate (remove it from serum and move it into cells/new RBCs). When I spoke to some others it sounds like they needed significantly less folinic/methylfolate to support regular injections!
Just had repeat tests done yesterday, after another month and 10 injections later my folate is now 27 (down from 47). I still have bad symptoms and suspect I will until it returns much closer to my natural physiological level. I think I may just be one of those people who are exceptionally sensitive to folate!
Fair enough! I think I’m going to be guided much more by my symptoms from now on. Whenever I’ve tried to chase an optimal number it’s backfired, like my body knows I’m trying to outsmart it. If you’re able to update us with your outcome would be interesting to hear it!
When I was first found to have B12 deficiency, my folate and ferritin were both on the low end of their respective ranges. Because despite B12 injections, my hair was still falling out and my gums were still bleeding, my GP gave me three months of supplements for both, and retested my levels to check they were high. They would then drop again, and I would supplement again. At one point, I remember having 400 mcg folate daily and another 400mcg folate daily in multivitamins. Because my GP was monitoring levels closely, I could rely on her to tell me when to start/stop with this and felt free to experiment a bit.
It took about 2 years to stabilise my folate and ferritin at healthily higher levels. Ferritin needed to be above 60 ug/L - although later my Oral Medicine consultant wanted it above 80. Quite difficult initially to get it there.
It took about 3 years for my B12 to bring my MMA down into range. I now self inject twice a week. I had previously received B12 at this frequency from my GP so I knew it would be largely effective. It seems to keep my symptoms under control mainly, and over years I have had slow improvements. Some blips, mainly short-lived.
I have vitamin D and Raloxifene on prescription because I was found to have osteoporosis of the spine. This has since reduced to osteopenia.
At one point, consultants tested me for Coeliac disease, but it was ruled out. My GP diagnosed me with functional B12 deficiency fairly early on and this was confirmed by the testing lab. Nothing other/further has ever been found despite investigations. I now only see an Oral Medicine consultant and have not contacted a GP for 2 years.
I would never tell other people what to do in terms of supplements or medication as it is very clear that we are all different. We are not medically trained, we have just had to pay more attention to our bodies in certain areas than most people need to. I wouldn't act on the advice of untrained people who insist on anything or who tell you what to do, rather than relate their own story, link to genuine relevant research - and then leave it to you to decide for yourself. If it is so effective, where is the need for insistence ?
So this is just what happened to me and the medical advice I was given.
Whenever I have felt wary about something offered, I have refused it: Amitryptilene (a few times) and Bisoprolol spring to mind. Whenever I have had a bad reaction to anything, I have stopped taking it and informed GP/ consultants for records: Risedronate for example, Metronidazole and Doxycycline: finished short courses of these antibiotics but reported their adverse effects to GP.
Thank you this is so helpful. I too am trying to get ferritin up. My migraine doctor wants it above 80. Last test was 35. Waiting for next bloods. I will never override my instincts again. Thanks again.
Personally I’d avoid most of these Facebook groups and their ‘one size fits all advice’. They scared the pants off me at the beginning of my journey. I found them to be no more use that my blinkered GP but with different advice. Stick to the advice on this group, you will learn far more 😊
I have read a lot of interesting things on our site re folic acid. Plus lots of information and research. For me personally, I will continue with 5mg folic every second day as advised by my GP. It was initially daily when first diagnosed. I am doing ok with 8 weekly jabs and folic acid. I also take a B vitamin and D3 every second day. I wonder Mrs T if your post op recovery, influenced a lot of symptoms, as any surgery is quite a shock to the system. But you’re doing well now and I wish you all the very best x
I'm sorry you're having these reactions. I too can not tolerate folic acid. Mine is not low but was suggested i try it to see it helps with symptoms. I guess im one that cannot take it. I also don't feel well with magnesium either. I don't know anything about how they work , this is new to me but I can't tolerate folic acid it gave me insomnia jitters, I felt achy all over. It didn't go over well so I don't take folic acid. And magnesium did the same thing to me. I'm going to see a new hematologist this afternoon and get more tests done and this was one of the things I was going to talk to them about. For me I'm just doing B12. For now, until I can get more answers as to what other supplements my body is lacking. But it doesn't seem it's lacking folic acid and my body doesn't seem to like when I take it. From what I understand if you're folic acid isn't low then you don't need to take it. With the Magnesium a lot of people say it helps them sleep, but my body doesn't seem to like it either. So maybe I don't need anything but B12. I hope to find out today. Good luck. You're not alone.
Just wondering what form of magnesium you tried? All of them did the same to me except Cytoplan Magnesium Threonate, which doesn’t have any fillers and the threonate form best for brain/sleep, might be worth exploring!
Hello, Bs2022, Sorry to hear you have issues with it too . I took 21st century magnesium 250 mg bone and muscle support. My folic acid was 1,000 MCG and also I had an issue with iron. The iron I took was high potency slow release iron. I hope that helps. I'm just not going to take anything but B12 for now. Good luck
Sounds like a plan. I think the fewer supplements the better personally. But if you do decide to try magnesium, that’s the one I recommend. It’s also much lower dose
I'm going to a new hematologist this afternoon, and if they do blood work and I need to take something then I will, but my readings don't say that I do in the past. I was just taking them to have better absorption of B12 and to try to see if it helped with my sleep and my muscles, but really I think it just made things a little worse for me. Thank you! I will try that if I need to take it again. I will try your lower dose and type. Thank you very much for that information.
Thank you so much for your kind reply. We are all so different arent we. I can’t tolerate a few things people say are helpful like Kefir, methylated supplements etc. how did you get on today? X
Thank you for taking the time to reply and tell me that. I am going to be more careful now too.
I posted on another thread that I had a bad reaction to folic acid tablets. I was okay the first few weeks, then I started getting horrible symptoms and the doctor essentially ignored me and told me to go to A&E if it was that bad. I live over 30 miles from the nearest A&E and had stopped driving due to health issues, no hourly bus service, a taxi would be €100+, and no one would give me a lift.
I posted about it on FB and a pal of mine who's wife is a nurse told his wife what I'd posted, she asked me a few questions and told me I was ODing on the folic acid and to stop taking it.
I stopped taking it and the symptoms disappeared. That doc now has the knives out for me for "refusing to go to the A&E when told to"
(I stick to speaking to the practice nurse (or my pal's wife these days)
I can't remember how long I was on the tablet, but I woke up one morning and I felt like I was going to explode, I swear my eyes were rolling in their sockets. I walked down to the clinic, and I felt like I was jumping out of my skin the whole way there! (about a mile)
I think I was talking REALLY LOUDLY and very fast, and twitching like crazy.
I hadn't taken any of my meds that morning and later on that afternoon (when my pal's wife PMed me) I was starting to 'calm down'. Next day I was more-or-less back to normal, and the next day I was fine.
I did tell the doctor next time I saw her that I thought it was the folic acid tablet, she didn't agree with me, but didn't check what my levels were.
I have to be careful with meds, I check the leaflet to see what the side effects are so I can monitor my reactions. There were no side effects listed on the folic acid. I did look online a few years later and discovered that the symptoms I had were indications of overdosing on folic acid.
i too have naturally high folate. The group you are referring to wants people to supplement folate because they assume people have normal to low folate. I stopped taking the extra folate and monitor my levels with the group’s approval.
For something that is regularly tested, they should suggest testing before supplementing as needed. Followed by further testing.
If folate is just a bit low, simply taking a fairly standard 200 or 400 microgram dose would seem reasonable. Not diving into high doses without knowing they are needed.
I’m not sure we need their approval but it’s good to get along and be heard. They have been so helpful getting me to SI but I can’t agree with the folate in my particular case.
yes definitely. They have the standard advice, which works for most people. But not everyone is the same. Anyways, they are an amazing group, so helpful. They have dramatically improved my health and life so I am seriously grateful.
Yes there is a lot of good in that group. Without their help I’d have never learned to SI. I just wish they were more pragmatic about the folate as this has made me really sick!
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