I have a dilemma. I’ve had 2 B12 jabs in the last 6 months. I tried them because I have been feeling awful and suspected that it may be a deficiency. I suffered from folate deficiency a while back which was treated with folic acid by GP but I felt terrible on it and had to stop. Luckily my folate level had shot up. I then had a B12 jab and felt great for a short while then started to feel awful again. I had a procedure under GA and after that felt shocking. I had another jab and it fixed me pretty much, but shortly after got folate deficiency symptoms again. Didn’t bother getting tested by my GP as they won’t do anything. So, I want to try a set of loading doses, but I cannot tolerate the cofactors. Mainly B vitamin supplements. Im super sensitive to practically anything. I haven’t found a magnesium supplement I can tolerate or a folate one. Im about to try folinic acid to see if that is any different. Does anyone have any advice or does anyone have a similar problem?
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browny52
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Thanks Nackapan. Back in April last year my folate level was 2.4 (4 - 27) and B12 was 259 (130-800). B12 considered well in range but treated for fate deficiency. I had some bloods done before Christmas and am waiting to get results. I’m expecting my b12 to be higher because I paid for a jab in October. I want to see what my folate level is before I do anything else. They won’t check my magnesium levels but have tested vitamin D I think. I’m hoping to get a printout next week. I’m guessing everything was in range as I haven’t heard anything.
"I’m guessing everything was in range as I haven’t heard anything"
I think it's wise to check all your blood test results yourself. I was told on several occasions that everything was normal /no action but when I got access or copies I found abnormal and borderline results.
Look for trends in your blood test results.
Results that are increasing or decreasing over time could be significant even if still within normal range.
To back up what Nackapan said, If you inject before getting B12 tested and other very important tests that go along with it, you will never get an accurate reading again, unless you stop taking any supplements for months. They say two weeks, but two weeks is not nearly long enough for b12 to leave your system. I just did it to prove it to my doctors. It takes more than 6 months for that. B12 in your system when testing can give false results. So it is best to do all your testing before you start supplementing by symptoms. Symptoms are very important and should never be dismissed but a lot of deficiencies can mimic each other or mask one another.
I can not take folate or magnesium. they make me feel quite awful. But my test show that I am not deficient in either of them so I do not take them. In fact my folate is >24 and the limit is 20, so I am high on folate and I don't even take it. Not sure why that is. No one seems to be able to answer that. Folate deficiency can mask a B12 deficiency. But to be honest, I really do suggest getting all the tests you need before supplementing on your own. You can't OD on B12, but on other things you CAN have too much. So it is important that you have a starting set of baseline tests to refer back to for years to come. If you don't trust a doctor, there are B12 Health spas that can test people but it will cost you cash. At least in the US there are B12 health spas.
Hollywood has made a fad of using B12 as a weightloss and energy supplement, so we have spas all over. They can be expensive.
Sleepy Bunny is right, some doctors don't think borderline is a problem and some B12 can be in range, and you don't have to be anemic to be deficient, but at the same time you can show symptoms, but they won't acknowledge a deficiency because the numbers don't show it. So a comparison is always very important to see if you are trending high or low on anything. But take the tests ASAP so you can get on with being well. There are other tests you might consider like MMA, homocysteine, MCV, MPV, along with the B12, folate, iron, D3, ferritin.... Just a suggestion. Another test they mistakenly tend to run AFTER they start B12 and should not, is an IFAB (intrinsic factor test). To see if you can absorb B12. If you are a vegetarian with dietary B12D, you would still be able to absorb B12 and would not really need this test.
Are you a vegetarian? Or have you had gastric bypass surgery or taken prolonged metformin or omeprazole or have you had nitrous oxide recently? I noticed you said you had surgery and felt badly afterwards. Nitrous Oxide should be avoided at all cost. These things have been known to cause B12D. I think any surgery could easily deplete your B12 and energy. But that is just an assumption.
Also, alcohol can deplete B12 and not allow you to absorb it. There is a lot more to B12D than one would think. I had no idea everything it affects.
Hi EllaNore, thanks for your reply. I tried a B12 jab out of desperation really because I felt so ill. My GP would not run any of the tests you suggest and I had to beg to get folate and B12 done in the first place. I at least felt vindicated when my folate came back low. I couldn’t wait in the end and just decided to try it. I had a dramatic response to the first jab, not so much the second one, but in both instances I felt ‘normal’ after a few hours rather than sick. I think I’ve just resigned myself to self treating because I’m going to get zero help from my GP. I had my gallbladder removed I’m 2005 and have had problems ever since. This has increased since perimenopause. I’m guessing Nitrous Oxide was used in the surgery I had in an October. All in all it’s difficult to know what to do. I want to try self treatment but without being able to tolerate the cofactors I’m unsure how to proceed. Xx
So did your doctor give you the B12 injection? Or did you just go about getting it yourself? And that's fine I was just wondering if your doctor okayed that and if he did why won't you continue treating you if he saw that you had a positive reaction to it and it made you feel better? A lot of the times doctors do go by that. They'll give you B12 and then they'll take it away and if you regress they'll give you more B12 and if you get better they by process of elimination say that you have a deficiency. I'm not really sure about what you mean by having problems with cofactors. I'm not really good with that kind of stuff. Are you saying that you had a reaction to the injection that you got? Can I ask what kind of injection it was? Was it cyanocobalamin, methylcobalamin or hydroxycobalamin? A lot of people have bad effects with methylcobalamin. Some people can't tolerate it. Cyanocobalaman is what we get in the US but I don't feel it was strong enough for me. So I found hydroxycobalamin from Germany and I use that.
Also do you have gut problems? Problems like with celiac disease or irritable bowel syndrome or other things like gastric hernias or hiatal hernias heartburn etc. All those things can make it difficult to absorb the nutrients that you need. So if you've got gut problems which is where B12 and pernicious anemia start, that also points to a B12 deficiency. It's a very complicated condition. So many different things come into play and they all have to mesh with each other. It's not an easy condition to diagnose that's why many of us have gone decades being misdiagnosed and underdiagnosed mistreated and undertreated. Then when we do find out what's wrong, we find the doctors don't really know what they're doing and don't really know how to treat us. So we're at their mercy unless we self treat. Which you can do. You can't hurt yourself with B12 so if you think B12 helps you, and you can't get the test you need, then I would treat myself. I don't know which cofactors are causing you a problem so I don't know how to help that situation.
Looking up what cofactors is, it said it's a protein that other things need to bind to to be absorbed and for the body to use it. Which is exactly what B12 needs to be absorbed. It needs intrinsic factor protein so that it can bind to it and be brought down into the ilium of your digestive system to be absorbed by your body and used. So if you're having a problem with absorption, that's also another indicator. But I could be wrong.
My GP wouldn’t help at all. I sourced an injection myself just to see if it made a difference. I’ve told my GP but they still won’t do anything unless my numbers show I’m deficient. I had no hope of getting other tests. From what I’ve seen on other forums you’re supposed to take folic acid, magnesium and a b complex alongside injections if you are doing them frequently known as cofactors, these are the things I can’t tolerate. I’ve had IBS since 2005 when I had my gallbladder out. I could eat or drink anything before that. After that I developed so many food intolerances and became really ill. again got no help whatsoever from my GP, so had to try and work things out to minimise the problems. It just gets so tiring trying to work out what is wrong and getting now help from the medical professionals. Xx
Ok. I have read that too, but if you are not deficient in them, then don't take them. I don't take anything with my B12. Just B12. I think you will be just fine if you don't take anything else.
It is very frustrating 😬! I am sorry you are experiencing what we all do, unfortunately. We are pretty much left to fend for ourselves. Hence we are all here in the forum. I truly feel you can just inject your B12 and nothing else and go from there. If you are not going to seek further tests, then go with your gut and just inject B12 and see how things go before you add other components that I don't think you really need. I could not take folic acid at all. and it turns out, mine is high anyway. So some people don't need other cofactors. I think you will be just fine.
My stomach problems have gotten calmer since injecting as have everything else. I have a ways to go still but but I have come a long way too. with just B12.
Good for you for taking this into your own hands and being your own health advocate. It is a must with this.
I would like to hear how you do without all the other cofactors and just B12. Go for it.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
Read blog post below if you want to know why I suggest this.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you Sleepybunny. I’m in the UK and live in Hampshire. I think I come under the Fareham and Gosport CCG but have struggled to find the local guidelines. I had both B12 and folate checked in April last year. My folate level was 2.4 (ref 4-27) and my B12 was 259 (ref 130-800). Therefore B12 deemed well within range and no treatment forthcoming. I have challenged this but they won’t budge, especially as I have tried B12 jabs subsequently and they have made a big difference just not for long. I struggle to keep my folate levels up. I had some blood tests done before Christmas and am hoping to get a printout of the results. I’m expecting the B12 to be higher as I had a jab back in October (paid for). But I’m interested to see what the folate level is. I’ve pretty much accepted that I’ll get no help from my GP, so am going to go down the self treatment route. But there is a part of me that wonders whether this is even my problem. But as I said I struggle so badly with any supplements that I’d be worried to do every other day injections without being able to tolerate the cofactors, so was interested to see if anyone else had the same problem.
Sadly as you seem to have found out , a good understanding of B12 deficiency is sometimes in short supply among health professionals.
I had severe B12 deficiency symptoms with serum results as high as 500ng/L.
Has your GP considered whether you might have Functional B12 deficiency? This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Functional B12 Deficiency is mentioned in NHS link about B12 deficiency in Causes section.
MMA, Homocysteine and Active B12 (Holotranscobalamin) are tests that may help to diagnose Functional B12 Deficiency.
UK guidance suggests that people who are symptomatic for B12 deficiency should be treated.
See NICE CKS B12 deficiency document in my reply above.
Your best bet to find up to date local B12 deficiency guidelines is probably to submit a FOI (Freedom of Information request to the ICB asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Put FOI or Freedom of Information in search box on ICB website which should take you to a page explaining FOI process.
You can also submit a FOI request to your GP surgery but this may irritate them.
Your local MP may also be able to help you find local B12 deficiency guidelines.
"But there is a part of me that wonders whether this is even my problem. "
Have a look at these symptoms lists...
Symptoms of B12 Deficiency (folate deficiency also mentioned)
I have a number of the symptoms but as my GP says it could be lots of different things, so I guess that’s why I worry it’s not B12, even though a jab initially makes a huge difference, but triggers the familiar folate deficiency symptoms after a few days. I struggle to tolerate any B vitamins including different forms of folate and folic acid. X
Thank you Nackapan. They have done the basics. I literally can’t get anything out of the GP. I’ve had to push for the small amount of testing I’ve had. She absolutely refused a trial of B12 jabs. I felt so ill that I had nothing to lose by trying one. They seem to temporarily fix things (I’ve had two now)., until my folate drops and then I get folate deficiency symptoms which I recognise now. She literally said there is nothing she can do for me. She is the best of the bunch at our surgery as well. They all just treat to numbers and have little understanding despite me quoting the nice guidelines etc. Her argument is that it could be anything as lots of things can cause the symptoms I have. I think if I want to explore this I will have to self treat and follow the guidance given on forums like this xx.
If looking for a magnesium supplement take a look at BetterYou Magnesium Oil Spray. It can sting a little but being a spray has the benefit of no fillers and doesn't rely on absorption through the stomach.
What was the folic acid dose/frequency? Quite often people seem to be prescribed the dose to correct a deficiency (5mg a day) but are then left on that indefinitely and inevitably feel very poorly after some time (5mg is 25 times the RDA). If you stabilize your folate, dosages around 400mcg daily (2 x RDA) are often adequate to maintain even with absorption issues.
I was given 5mg for 3 months however I only made it to 6 weeks because I felt so awful. My GP retested my levels and they were above the measurable range. Now I don’t seem to be able to tolerate any folic acid or any folate supplements. Even a low dose. I have tried the methylated and non methylated forms of folate as well as a low dose folic acid pill. I get terrible insomnia, twitching eyelids and a terrible stressed feeling along with the worst headache. The last time my levels were measured they were at 4.2 just above the low threshold, I eat folate rich foods daily. I am at a loss to know what to do xx
Hm. Since you felt better with B12, that might suggest a deficiency and in that case, B12 should be treated before folate. Although your B12 is not lower than whats considered the normal range in the UK, unfortunately that doesn't count for a lot and significant deficiency symptoms can be present even with normal or even high serum B12.
As others mention, it's preferable to postpone supplementation before testing, since supplementation skews results. Additional B12 related tests for deficiency are MMA and Homocysteine, although you may need to go private to test if your GP is not interested.
" I’m expecting my b12 to be higher because I paid for a jab in October. ". Ah, this will definitely affect any testing I'm afraid and it may mean that you might have to consider self-treatment since blood parameters may be corrected by the jab (but deficiency symptoms not fully treated). If you have a functional deficiency, MMA may still be raised.
I just rang the surgery this morning and my B12 is now at 883 (injection end of October). My folate is still at 4.5, so right at the bottom of the range. I gave up trying to get help from my GP which is why I went and got a jab. I’m surprised it’s still a that high two months after the jab though. Is that normal? Xx
Yes, completely normal. I think I read about 700mcg of the jab is absorbed so a significant rise would be expected and can take a good while to drop. But most with regular injections treating their PA have B12 levels well over 1,000 which seems to be needed to effect repair and keep symptoms at bay.
Those were my exact same symptoms on folate and again when I tried magnesium. Not together. I only took one pill of each, months apart. Now my folate is >24 and no one knows why. My MCV and MPV are abnormal but only by a few points so they are dismissing them. But they lean towards microcytic anemia and megaloblastic anemia, but they will not listen to me because my RBC are normal.
Yes, it was miserable. I inject B12 daily. I wrote you a fairly long response above about getting tests done before you start treatment of any kind because it really is helpful for the future. The reason I feel so strongly about this is because for the last couple of months my doctors have been really putting me through a nightmare of tests and appointments because they ran all those tests on me when I had B12 in my system that they gave me. They should have known to run those tests before they started my treatments. I didn't know anything about this pernicious anemia B12 deficiency before 9 months ago. I had no idea I should have had all those tests before they started treatments. Because it is messed me up now. The doctors that I go to don't want to believe it because I had B12 in my system and now they're saying that it's a false positive on intrinsic factor. Which says 100% that I have pernicious anemia. Now they're questioning it. So I went 2 weeks without B12 and suffered greatly for it, to prove a point to them that #1 two weeks is not going to get rid of the B12 in my system so what difference does it make. And #2 I wanted to prove that I do have pernicious anemia so they stop playing these games with me and start treating me for what's wrong with me instead of all these other stupid things that they're trying to say are wrong with me. Like blood clots and pulmonary vascular disease. They think my heart is bad because I'm out of breath all the time and because my legs are weak. No..... I have megablastic anemia That's why I'm tired all the time and my legs are weak and I can't catch my breath. So I went without B12 for 2 weeks to take all of my tests again and they all come back inconclusive again. So had my test been run before I ever got B12 in my body My doctors would be believing my test results instead of fighting them and I could be moving on with my treatment. So I just treat myself, because the treatment for everything that's wrong with me is B12! So I just inject every day and hopefully I'll get better than what I am. I've improved a lot in 9 months but I am nowhere near okay. So do yourself a favor and get your tests without any B12 in your system so that you can start getting treatment and treated correctly by your doctors. It's very important. There's enough unanswered questions with this disease. Don't make it harder on yourself. Try to get all these tests that you need before treatment. Good luck to you.
I'm sorry Nackapan! That is so frustrating! I can tell you if it was one of them or a loved one, they would be thinking differently.
It is terrible that you/we have to go through all of this just to be well. and fight the doctors the entire way. I have not been on here for a couple of months because of everything they were putting me through. and with the holidays and my cancer anniversary in December, I was just too depressed to come on here with such a terrible attitude. I didn't want to make anyone else miserable. In two months, I had had at least 8 appointments more than an hour away each time. Testing me for everything I don't have, and doing nothing for what I do have. They are spending more time to discredit my PA diagnosis than they are treating me. On the 18th of Jan, I have a pulmonary vascular appointment to rule out heart issues and blood clots. Ridiculous!! I'll go just to be safe and rule it out, but this is it. No more!
Thanks, I do have printouts of everything. also it is all online. I have downloaded everything. and there is a lot. all the way back to 2012.
My oncologist asked me if I want them to stop testing my B12 levels. I said YES PLEASE!!! But continue with the MCV, MPV, folate because my folate is high. She agreed, it would take a year or more for b12 to get out of my system enough to show my PA. I will not go that long without treatment. They are the ones that ordered all the tests that they now don't want to believe because I had B12 in my system. They put it there, not me! But I also could not walk at all. I was crawling. I was too weak to stand. So I guess he thought it was more important to get me out of this emergency condition. I am thankful, but now I am screwed that no one will believe me from now on. My first IFAB was positive for PA. My second one last month with no B12 for 15 days, was undeterminable. That was the word they used. If I didn't have PA it should have been negative. so I am going with PA and I don't care what they say. I have every symptom and B12 is helping me. I am so much better than I was, but not well enough. I hope in another year, I should feel as good as I ever will. Besides the treatment for B12d and PA are the same so it doesn't really matter except that I feel I have serious demyelination and Subacute Combined Degeneration.
It is dispicable that they sent such a letter to you and all B12D sufferers. I do not get what is going on.
they give 10,000 times more B12 in a single injection for Malaria and cyanide poisoning everyday until they show signs of improvement. So they know damn well, you can't OD or have too much B12. Why can health spas disperse injections daily with no authorities checking on them, but we can't inject to save our lives. I am just done. I will treat myself and I don't care what they have to say anymore.
You're doing great without them Nackapan, just keep treating yourself and live your life. Hang in there. Hugs!
Also folic acid is known to mask a B12 deficiency. It's important that you don't go taking supplements unless you know you should or need to. Technoid is very knowledgeable about nutrition and supplementing. I am not. Lol But what I've learned is that this B12 deficiency is not cut and dry there's a lot of other factors that come into play that affect each other. And getting the balance just right for me has been a nightmare. And it's been a nightmare to find out the truth because they tested me with B12 in my system. And now I feel like I'll never know the real answers unless I stay off of B12 for a year. And I am not willing to do that.
I’m going to get another injection and keep up the folate in my diet. I might try and take a folic acid pill on the day of the injection as I seem to tolerate one pill but not subsequent ones and see how that works. Thank you for all your help xx
I also have a hard time with magnesium and was taking epsom salt baths 3 times a week. I have since discovered floating and now do that about once a week. I highly recommend it if it’s available where you live. I got lazy with my injections over the last few months and am now not feeling the best so I have decided to start over and find myself also needing folate. The only one I tolerate well is called gentle iron and it has 400 of folate and 28 of iron bisglycinate. That form is the only one I can tolerate. My iron tends to come down a bit so I supplement both. It’s a low enough dose for maintenance but is just enough for me to feel better. Potassium is another one for me. With that one I try to increase my intake through diet. Hoping you feel better soon!
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High b12 struggle goes on
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