I’ve spent years suffering with extreme fatigue and insomnia. I’m severely depressed to the point of suicide because the life I’m living is no life. I live with debilitating fibromyalgia, anxiety, blurred vision, neuropathy, poor concentration and focus amongst other things.
I’ve been told throughout the years that my b12 is on the low side but not low enough to cause my symptoms. I’ve been paying for B12 injections privately, and was admonished by my GP for doing so.
On Monday I was advised that my Folates were dangerously low but without further information other than being prescribed folic acid.
I’m confused. Can low folates have such a profound impact on my system?
Any information or guidance would be appreciated
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MaryBr3
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Yes it can, I have started passing out, balance bad, eyes blurred and palpitatations, high blood pressure, ect, was put on 200mg dose ferrous sulfate prescribed by gp, i felt much better, only prob is gps only give it for 3 months, than bloods checked, apparently too much is bad for the liver ? ,
Thank you for replying so promptly. I’m really glad that you’re feeling much better and hope that this continues. I feel like im banging my head against the wall with my GP’s because they become really defensive when asked questions and I'm so tired to argue with them.
Thank you so much for engaging with me. I genuinely feel overwhelmed in the best way possible at the kindness of everyone for giving up their time to help me.
It’s such an exhausting vicious circle. Reading through all your replies I feel both angry at how my GP’s have not considered to explore these deficiencies given my life has basically stopped in the past five years and embarrassed that I’ve failed myself by not being a better self advocate.
I would love nothing more to get off the multiple pain medications that I know I’m being palmed off with.
The information you guys have shared with me is truly invaluable and has given me that motivation to question and learn more.
I’m so sorry to hear that you are suffering so. Do not lose heart! You have come to the right place! Most general practitioners don’t understand pernicious anemia. I would suggest you get a methylmalonic acid test which would be more indicative of the level of B12 in your cells.
I had low B12 when not supplementing and super high B12 when supplementing orally, but I was exhausted and and had the same low B12 symptoms either way. My symptoms improved only on injections which I purchased through Germany (learned how to do so on this site) I was injecting three times a week for well over a year dosing so frequently based on symptoms. I further improved when I added methyl folate (400mcgs) daily orally. I had years ago a lab test that indicated I had two SNPS on a gene that indicates a methylation issue I don’t know if that is related to a folate lab value, but it was very helpful to me I just reduced my injections to twice a week as a test and so far am feeling fine
I have a new GP here in the states who seems fairly open-minded and who has ordered a methylmalonic acid test -first doc to think of it I’m sure it will be fine, because I feel fine on the current regimen.
If I were you, I would continue with B12 injections if they are helping you. Read this site as often as you have time to so you can learn what to do.
Do not lose hope! You have found the site that will help you! You will recover! The moderators on this site will respond to you and they will provide you with excellent advice
I feel so heartened by your response, thank you so much for your understanding.
Already I don’t feel so alone. I’m going to request those tests. My GP was so alarmed by my poor mental state during our last call that he asked me what tests I’d like completed. However, I was so overwhelmed that I’d no clue what to request.
I’ve went from being a high paced professional to a 45yr old woman who rarely leaves her room.
I think you can feel hopeful that supplementing folic acid will eventually help you quite a bit, especially since you have been injecting B12 for a while w/o folate supplementing. Generally after a bit of time on B12, it is advised to supplement folate. If you have trouble with the folic acid supplement, come back here. There are alternatives that you may tolerate better. Best wishes. I have been where you are…in fact I still am a good portion of the days, but supplementing B12 and folate is definitely helping!
Thank you for your response to me, I really feel so much more encouraged that living is possible reading your experience.
I feel quite embarrassed that I’ve not been a better self advocate but I now feel that I can do this and that’s down to reading all of your experiences.
What was your B12 test result? It is possible to be B12 deficient with severe symptoms with an in-range result. Yes folate deficiency can cause similar symptoms, B12 deficiency can actually cause a functional folate deficiency since the folates get trapped at a certain point in the metabolic cycle and cannot move further. It's very important that B12 levels be corrected before folate.
Thanks so much for getting back to me, I really appreciate it.
I don’t actually know what they were apart from being “through the roof”. I’d paid for 3 b12 shots in the 2wks prior to the blood tests. My GP admonished me for going outside of them for B12 and told me not to be doing so again.
Every symptom I’ve had points to B12 deficiency, and I get that I’ve skewed these results by having infusions. After the first infusion I felt like my mind was sharp and I could think coherently again, with some motivation. The last two were a double dose and I slept 32hrs afterwards.
I feel pretty lost on what could improve my life to something worth living.
Is it possible that my symptoms are actually related to low folates?
ah sorry, I meant what was your B12 level before injections? measuring B12 after injections will always show a high result but this does not correlate to effectiveness of treatment. You mentioned neuropathy as one of your symptoms and this is something thats more characteristic of B12 rather than folate deficiency. There are of course many other causes of neuropathy so B12 deficiency is far from a foregone conclusion.
There is no danger to the B12 injections but the problem with it is, as you mention, it will now be more difficult to test for a deficiency as serum B12 will probably be high regardless. MMA and Homocysteine are also possible but likewise may be affected by the injections.
The last blood tests prior to the injections, were explained to me as low but still within normal range. For the past 5yrs I’ve put every symptom down to fibromyalgia but this past few years after much research I’ve been able to isolate certain symptoms as relating to or not.
However, I’m so mentally and physically drained battling my Doctors to take me seriously that I don’t put up much argument these days.
I will request a copy of the results and use them as a basis to work from going forwards.
I do feel really silly not asking for these but I am genuinely exhausted and have lost all confidence in myself.
A low normal B12 does not rule out B12 deficiency and without ruling out a B12 deficiency, a doctor cannot rule IN fibromyalgia - since Fibromyalgia is a diagnosis of exclusion. Basically its usually a lazy diagnosis as there is no known cause and no known effective treatment, which makes it pretty handy and inexpensive to treat since the doctor needs to explain nothing and do nothing in particular other than shrug at the patient and prescribe pain medication or antidepressants.
Sadly this has been my experience; Morphine, Nuerotonins, Antidepressants, Antipsychotics, NSDs. Bearing in mind that I was a round-the-clock social work manager for most of my adult life to being practically bedridden for 5yrs.
That you for linking the article - reading through it I can’t help but feel failed because I’ve reported the majority of these symptoms concurrently for too long.
I now feel some hope at the potential of living once more; that has started with reading all of your kind, informative messages and insight into your experiences
I’ve had 3 B12 injections in the past 5wks - I’ll be honest that I’ve no regular timeframe because it’s been determined by finances.
I will try to maintain them as often as I can.
Can I ask if your daughter life has improved with the fibromyalgia diagnosis removed?
I’ve made a note of what I’m going to ask my GP for on Monday in addition to a copy of my results as a baseline for understanding what’s happening to me.
My sincere gratitude for your time and energy engaging with me.
Yes, definitely. Any deficiency of either vitamins or minerals can.
The processes of metabolism use a whole range of nutrients and all are interdependent so you only need to be slightly lacking in one thing for everything to go wrong, making you feel dreadful.
Feeling depressed is a classic symptom of folate deficiency. The main treatment is folic acid but the best, most available source, by far is from food - look up what good sources you will most like to eat - alongside your supplements.
Just be aware that while most people do best with folic acid, some people need methylfolate and a very few do better with folinic acid.
A broad spectrum multivitamin and mineral supplement may well help you too - supermarket A-Z ones are often as good as, if not better than, more expensive branded ones.
Nothing is a substitute for a balanced diet with as wide a range of foods as possible. I fully know that when you are feeling lousy it's the last thing you want to bother with but it's well worth the effort! Any effort is better than nothing!
Thank you for engaging with me. It’s been so helpful for me trying to move forwards as I know know to look out for the impact if any of the folic acid and that there are other options available. Even this small piece of knowledge has given me hope, something that I’ve not felt for a long time.
I feel less guilty about my poor mental health too - I actually thought that I was losing my mind and have been so overwrought with suicidal thoughts that it was beginning to scare me.
Unfortunately almost all deficiencies of vitamins and minerals primarily cause anxiety - I think it is an evolved instinct to give our caveman ancestors the jitters so they got up and foraged for food to solve the problem.
However if you can't get what you need, especially if it's compounded by several deficiencies together, then you just end up feeling dreadful and not wanting to fight on.
Although it is difficult to unravel the individual problems and get the solutions, in today's modern world it IS worth looking for answers, rather than just giving up.
I'm one of the least suicidal type people there is but I considered it many times when I had bad multiple deficiencies.
Lack of B12 made my emotions overwhelming and if anyone spoke to me - good or bad - I just wanted to cry! I think these mad emotions were the biggest drivers of the suicidal thoughts too. I felt like I was bonkers. I probably was! 🤪
Lack of folate causes me a cloying tiredness that makes me feel depressed in a really low, tired, can't be bothered, way. Horrible.
If I'm short of vitamin D I'm grumpy depressed "oh for goodness sake, what's the point?" sort of thing.
Low potassium levels make me feel bleak - everything is "woe is me" and I don't want to carry on.
If I'm short of iron then life's just too much of an effort to be worth living - can't breathe, can't think, can't function but that's more of a practical feeling than an emotional one.
Low magnesium just makes everything so scary I just want to run away from myself - it must slow the way my (the) brain processes senses because everything seems to jump out at me and everything seems to move: hedges, walls, people, traffic, etc, towards me rather than me going past them.
And they're just the main ones. The other different B vitamins also have their individual effects, as do the other essential vitamins and minerals we need. Put them together and it's no wonder we can feel absolutely dreadful if we have absorption problems.
They also each come with varying types of fatigue which together cause exhaustion beyond what's imaginable. And various muscle and nerve responses which are all painful - in addition to just basic neuropathy.
The upshot of it is that if you cope somehow when things are low, then you can feel great once you've got things sorted out! Yes, really! OK, it's always a bit of a balancing act and you get better days and weeks than others, but it's fab having the good spells and when it's not so good you're always looking forward to getting the balance right again!
Just remember everything is interdependent so if something gets out of balance, it messes everything up a bit so patience and practice are needed.
People are always commenting on my always being so happy and positive and motivated and having such a lust for life. It's only because I work very hard at my nutrition ALL the time - and I still have my problems. I think B2 is my current nemesis and I don't really know why. I've been SI daily for over 7 years and working on my nutrition all this time.
I'm very lucky because I had animal and plant nutrition qualifications and experience which was a good place to start! Not least, I knew how vital good nutrition is at a whole-body cellular level and that the effects are not placebo!
Well, the great news for you is you've got some extremely useful and encouraging answers to your post and a whole community of us behind you so you know you aren't alone in your progress towards feeling pretty good - and much more your proper self again.
(PS the standard dose for raising folate levels is 5mg tablets from your Dr every day for usually about 3 months and then a maintenance dose of 400mcg daily thereafter.)
It's definitely worth looking into SI the B12 - you probably need loads more than you are currently getting - so see Wedgewood's posts and replies on the subject - much cheaper, easier and less painful than going private for your jabs.
And try not to feel overwhelmed by all this - write down one or two things at a time that you are going to tackle as you feel able to and make progress on those.
You've made enormous progress with this post and now keep up a trickle of progress each week until you feel a lot better. Don't get disheartened if you can't do something every day - aim for something at some point in each week instead because it's much more achievable.
Good luck! And come back to us with your results and if you need more help or support!
You are really quite unwell throughout your body at the moment so give yourself a chance!
Instead of berating yourself for forgetting something when you find out you have, give yourself a "good girl point" for finally remembering it!
Don't chide yourself for having not done something, add on another "good girl point" when you have thought about it and recognised it would have been good to do - and consider whether it's worth adding to your "worth making the effort to do" list or not. It's quite an achievement at this stage to just be able to get your head around something so recognise such as an achievement in itself - it's all positive progress!
I’ve actually put it on my wish list just the other day because that was another dismissive style conversation with my Dr. I’m 45 so it’s not beyond reason that it’s some worth checking.
Thank you so much for your precious time and energy to reply to my post.
Folate deficiency and Folate Deficiency Anaemia can cause exactly the same symptoms as B12 deficiency anaemia.Sometimes B12 deficiency can be masked by Folate treatment , but sometimes Folate deficiency can be masked by treatment for B12 Deficiency. That's why it is important to keep having your folate and full iron panel blood tests done while being treated with B12 injections.
It is not surprising that your B12 blood test level would be high as you are having injections privately. Would you mind if I asked how often you have injections?
Did you also have a full iron panel done ? What were the results?
Have you also had a Vitamin D test?
Vitamin D deficiency can happen at the same time as other deficiencies, and can cause its own symptoms and make the symptoms of B12/Folate deficiency feel worse.
If you haven't had this checked , or had iron results , I would suggest that you request them from the GP as soon as possible. You can request it once a year and it is important to keep track of if you have Fibro.
Did they take a full blood count?
Were there any highlighted parts on that?
You may benefit from requesting an Active B12 test rather than a serum B12 test to ensure that the injections you are receiving are working for you and there is not a functional problem.
Have already been tested for things like Coeliac , Crohn's , Irritable Bowel Disease and Ulcerative Colitis and Pernicious Anaemia?
Don't worry about this , I know you are feeling all over the place but it is good to have these tests done to rule out these issues as a cause of your deficiency, or if there is a problem to get the best treatment and self care plan you can to solve your symptoms.
Often deficiency issues caused by other illnesses will be solved and seldom reoccur if you follow the right care for the underlying problem.
Vitamin deficiencies are very common with Fibromyalgia , the brain constantly releases vitamins and minerals in response to the pain signals as a form of defence and healing , so Fibro could be the reason for these deficiencies.
Even on a good diet the constant healing and neuro responses in Fibro mean that it is recommended for Fibro patients to take supplements and not rely on food alone to try to prevent recurrent deficiency. You might find it useful to join the Fibromyalgia Forum for help and support with your Fibro if you aren't on there already.
Are you on any other medications for other health issues?
Many medications including steroids , methotrexate, anti epilepsy medications , stomach acid treatments and certain antidepressants, to name a few, can make it hard to absorb or convert B12 and Folates . If you are on these medications , which is common with Fibro needs, you will find that as well as eating a nutrient rich diet you will need to take supplements to maintain the right vitamin and mineral levels while you take them. Vitamin D and K2 is often helpful to add to your supplements list take it after your fattiest meal , there is a good spray by Better For You which also contains Magnesium which helps Fibro Neuropathy too. Omega 3 is also helpful in reducing the severity of many symptoms , especially stiffness and joint pain.
Your treatment for Folate deficiency initially is to take Folic Acid at 400mcg a day for four months before testing it again to note any change.
A full iron panel should also be done at that time , as well as a full blood count, to show that both your B12 and Folate treatment are working and the measurements of your blood cells have improved.
Some people have a problem absorbing nutrients and so it can help to use a more active form of the nutrient you are deficient in . A Folate supplement consisting of 5-Methyl-TFH can help with this.
Do you also take a daily supplement of vitamins and minerals and an iron supplement?
Taking a daily combined supplement without iron can help improve nutrient levels as even if you have a good diet , if you have health problems , have trouble absorbing nutrients, or are on certain medications it can mean that you are not receiving enough nutrients for your daily needs.
Take your daily combined supplement after the fattiest meal of the day with plenty of water to maximize the absorption.
A separate daily Iron and your folate supplement is good to take with a glass of orange juice or vitamin C . You can get an active iron supplement which is gentler on the stomach , reduces constipation and is more easily absorbed. Solgar , Gentle Iron is the one I use. I suffer with IBS-C and it has been alright for me.
A daily B 12 supplement is better taken with water separate from food containing vitamin C but after a meal or snack. You could continue taking the B12 injections but you may find you only require the standard 2 monthly option. You could get this via the GP but they will probably want you to stop taking the injections for a while and then retesting your levels to see if in their opinion you need a B12 course.
That's a decision you will want to make. You could choose to continue the injections privately with guidance , or you could choose to take that time off injections to be retested and see whether B 12 deficiency is still a problem requiring those regular injections which you could then get from your surgery.
Just like with B12 treatment it can take some time before you feel the folate treatment is working. It takes time for the body to recover after a deficiency , especially if you have another Illness like Fibro.
I'm sure you were already eating a good diet for your B12 problem and anaemia. As well as including the red meat , chicken, livers, oily fish, shellfish, eggs , dairy , mushrooms , green vegetables , including pulses especially chickpeas , nuts , asparagus , Avacado, peas , pea shoots, and mangetout , broccoli, sprouts , rice , oats , bran and Folate enriched cereals and citrus fruits will all help the Deficiency and Fibro .
Drinking the recommended amount of daily fluids is vital. Even if you don't feel thirsty you can be dehydrated internally. B complex vitamins need a well hydrated body to metabolise. Symptoms of dehydration are intense make things like Fibro Pain , Fatigue , Muscle Weakness, Cardio and Neurological symptoms worse.
Drink regularly through the day and drink before even small physical activity or mental tasks to improve your ability to do them with less symptoms. This is a self care technique I have used for years because of my Dysautonomia. A good drink of cool water before activity or getting up / sitting down reduces the dizziness/nausea and helps regulate temperature issues caused by the neuro problems from your illnesses,
Slow deliberate breathing exercises in a chair a few times a day will help your body and mind relax but are also useful in calming down your system if your are suffering Palpitations or Anxiety symptoms.
Hope you improve on the supplement and get the help you need, take care , Bee
Thank you from the bottom of my heart for the time you’ve taken to respond to me with so much invaluable information. I’ve made note of it all, gratefully.
I’ve tests here for checking crohns, IBD etc.
i use the Better For You B12, D3 & K2 and magnesium. The sprays are much easier for me to take.
I feel extremely silly not knowing exactly what I was tested for and the exact results. I was told by the nurse taking my blood thst I was being tested for everything. I will request this on Monday and with all of the kind guidance from you and everyone who has engaged with me, I feel much better equipped to handle the conversation.
Sorry, just wanted to check , is the drug you meant Quetiapine , with an E . I'm just wondering how long you have been on it and if other meds had been used for the same condition.As , you probably know , if you are taking Quetiapine, some of the common side effects for it are severe drowsiness but also depressed or suicidal feelings. If those feelings have been getting worse since having this drug , and you don't feel a significant difference in the symptoms you took it for , it would be wise to discuss this with the doctor and consider a change in dose or drug after tapering to prevent any withdrawal side effects.
In combination with Duloxetine it can either feel like a miracle or lifeline , or it can feel like things are getting out of control. Think carefully , if you find the combination is having a positive effect on the symptoms you take them for then continue with the combo but discuss your dose with a Specialist . A positive effect is not a full "cure" , but as little as a 30% improvement in symptoms or episodes.
If you have both bad side effects and feel the combo isn't doing enough for you , you can try various other medications that combine with Quetiapine instead of Duloxetine, or you could consider discussing other options to combine with Duloxetine. Whichever way you go , it sounds like it's time to get back to the Specialist.
Are you taking Propananol for its " book" use , what I mean is for a blood pressure /Heart condition?
Or were you given it for use because of insomnia , palpitations, migraine or other Fibro pain issues?
I just ask as I was trialled on it for my Dysautonomia and migraine symptoms . It did nothing for me , in the sense that it made them worse , as it brought my blood pressure down which made my heart rate increase even more to try to improve my blood pressure , especially at night , making the symptoms worse.
Most GPs and Consultants don't understand Dysautonomia issues and overlook heart rate figures when taking readings which are more important to the problem. That isn't to say the doctors aren't good , or doing their best , they just don't get enough training in Autonomic Health issues even at a Specialist level. There is also little research and guidance available for them to easily access either.
Beta blockers can make symptoms worse for many people and actually increase the insomnia and pain. This is very true if you usually have a low to normal blood pressure but a high heart rate or tachycardia, common to things like Fibro which can be linked to P.O.T.S and other types of Dysautonomia .
If the drug is for high blood pressure and working for that but other symptoms are getting worse looking at other blood pressure drug options with your GP or getting to a Specialist may be important for you , especially now.
If your pain is not inflammatory but mostly caused by Fibro the Naproxen may not do much for you either , or at least it will only target pain caused by inflammation or migraine and not the Neuro Pain which is central to Fibro . The Duloxetine I assume was partially given for the neuro pain or mental health treatment with the Quetiapine.
Have they tried changing doses with this to get a better response ?
Have they tried it in combination with other pain medication?
Have you tried Pregbalin or Garbepentin at any point for the Fibro pain?
If the drugs aren't helping it is time to request for a referral back to a Specialist and the Pain Clinic.
It's important to be brave and tell them about the increased depression and suicidal thoughts , and that it is related to your other symptoms not just the mental health ones. This is sadly because it can take a huge amount of time to get to a pain clinic but the referral is treated as more urgent if your pain also effects your mental health.
The majority of drugs you are taking can cause both Vitamin B 12 and Folate deficiency issues , as they do two things , reduce how well you can absorb nutrients from food , and use more nutrients as you process them for use in the body.
Part of the reason the medication may also be having little effect on your symptoms can also be the Deficiency. It's a vicious circle.
You need the B12 and Folates to help process and absorb the drugs , but the need and constant drain on nutrients , means you become deficient in them so preventing you from absorbing as much of , or using the drugs as you require.
That's why it's so important to have a Nutrient rich diet, plenty of fluids, and oral supplements when you take a lot of medications.
And , if you still have the B 12 Deficiency despite oral supplements having a regular B12 injection at your surgery.
And it's important to resolve the Deficiency issues before you can really tell if your medications work for you.
Doses of your medications may need changing to ensure you get the right amount during the time your body is deficient. The deficiency, your blood nutrient tests , and the dose, need to be looked at regularly, managed , and fine tuned until the deficiency no longer has an impact on your metabolism.
This sounds like a lot , I know , but it is actually positive , it means you could have many options open to you and some very simple things like diet and dose changes could have a huge impact on how well you are feeling ,,and your general wellbeing in a matter of two or three months. If you need a chat in the meantime time , use the forums , join as many as you need , to post questions for your different health issues or just get something off your chest and get support from people whom feel what you feel.
I'm also happy for you to send me a message on the private message section if you want to discuss something that isn't related to PA or B12 issues .
absolutely yes it did for me… everything turned around when I started taking Lmethylfolate ( important as some of us can only absorb this form) keep on with b12 injections, take a daily Lmethylfolate and I take iron protein plus also , both from life extensions… after much research and trial and error I have found this is the best and winning formula for me I hope it works for you!
I just want to offer my empathy for your situation. I am so sorry you are feeling so low. I am so glad you reached out to this forum. Please, if you are feeling this low again or continue to feel this low, please come here. It is not your fault about the depression and feelings of suicide. That is your deficiency taking over. That is NOT your real feelings. You will feel so much better when you get the answers you need. You indeed came to the right place. Everyone here has been so helpful. Life-saving helpful. I would continue to treat yourself with B12. But please keep in mind, if you are going to get any tests done, it is best to get them done with no B12 in your system. They say to be B12 free for two weeks before any tests. If you can wait that long, it would be the best for your results.
I want you to know, we are here. Someone is always here. You are not alone. You WILL feel better. I promise! Sending you a big hug. Good luck. Keep us posted. 🦋
EllaNore your kind words of encouragement and hope have stayed with me all day and I’d like to thank you from the bottom of my heart for reaching out to me and for your compassion.
I’ve found much encouragement from your kindness and gratitude for the time and energy you gave to me.
You are so welcome MaryBr3. And I am so happy that you found comfort in what I wrote. Others here did the same for me when I was so scared. I was a complete stranger and everyone comforted me. I couldn't believe it. You can't help but want to do the same. I hope you get some sleep. Goodnight. 🦋
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