Vitamin B12 levels - anyone know much about?

[Anothermnuser]

Been feeling off for a bit - breathless at times, coughing, bit of light headedness that comes and goes. GP organised various blood tests and all were normal. However, B12 had previously tested at 630 in May and now 390. I think it’s within range but could it be the cause of any of my symptoms? Can you be symptomatic at that level? Suspect the previous levels weren’t checked when these results were signed off. Also, since bloods done, I keep feeling like I’m getting pins and needles in my hands. I don’t but it’s that sort of sensation.

Any advice please? Will the B12 sub-lingual spray bring them up enough and reasonably quickly?

Thanks.

Mine was just borderline. But it ruined my feet ( which is why I went as I couldn’t walk ) I get really tired and feel awful. I actually didn’t realise how awful I had been feeling until I had the big top up injection and felt better. And that was just a small dip.
I know when I’m due to have mine.

No tablets or sprays will work as ur body cannot absorb it the normal way. U need the injections.

I have a b12 deficiency. Didn't realise how much it was affecting me until I had three injections, one da after the other and I felt so much better immediately.
I need to get a top up injection every 12 weeks and I can tell when an appointment is due.
The particular deficiency I have is as a result of pernicious anaemia - my stomach can't absorb b12 so the only way to get it is by direct injection. It's a like a little scratch, stung a bit at the start, and well worth it!
It sounds dramatic but I think it's amazing that 50 or 60 years ago, I would likely be dead due to the condition but modern medicine means I just have a little injection and have a completely normal life - unreal!

Thanks both. Can you recall what your levels were to be okayed for the injections? I’ve had them before when pregnant but levels have been okay since. It’s the speed of the drop combined with some symptoms that may, or may not, be attributable to that drop which is making me wonder will it level off where it is or is it still dropping. I don’t think injections are routinely prescribed if over, is it 280 or something, maybe less?

I don't remember what my levels were but I remember the GP being visibly shocked at them when he read the results off the screen. I had been suffering for a long time with another condition and my b12 was tested as part of an expansion of blood tests to try to determine what the original condition was. Turns out it was all related!

I'd suggest asking your GP about the levels and treatment, particularly given that you needed the injections during pregnancy. No harm to ask the reason for the lower levels too - is it poor absorption or an inability to absorb? And if you're not getting satisfactory answers, it's totally reasonable to go elsewhere. My condition was very nearly missed entirely.

Mine were 109. Injections now every 8 weeks for ever

Make sure you take folic acid as well as b12 - the two go hand in hand.

There is loads of info on this online, including some nutty groups where people will insist the only thing to stay well is to inject yourself with b12 ordered online from Germany. (Although I wonder how they manage now.) I think the general conclusion is there is no nationally/internationally agreed level which is deficient and depending on which lab and exactly which test you had the numbers aren't necessarily comparable anyway. I have been on B12 injections for a few years. I don't absorb it properly but tests show I probably don't have pernicious anemia. One theory is my system was damaged by the use of anti sickness meds in my pregnancies. I would try the tablets and sprays for a while and then ask for a retest. If your levels haven't gone up then you know its an absorption issue and you need injections.

Thanks everyone for all the info. To answer @SmellyOldOwls, my folate level was 6.6 which is within range, albeit at the lower level so I’ve been supplementing with methylfolate and those levels went up to 7.1 in the same space of time between bloods, although from what I’ve read, I should be aiming for around 16. Interestingly, the introduction of folate seems to have coincided with the fall in B12. I think I’ll see if I can get a telephone consult with a GP and see what they say. @helpthewhos, I like your idea of supplementing and asking for a re-test in a few months.

I had b12 deficiency and was treated with a course of injections. We think mine was caused by lactose intolerance that was blocking absorption, I was also tested for coeliac. Is it possible that you have any intolerances/stomach issues that could be causing it? I don’t have dairy any more and seem to be getting enough from chewable vitamins now.

@helpthewhos

There is loads of info on this online, including some nutty groups where people will insist the only thing to stay well is to inject yourself with b12 ordered online from Germany. (Although I wonder how they manage now.) I think the general conclusion is there is no nationally/internationally agreed level which is deficient and depending on which lab and exactly which test you had the numbers aren't necessarily comparable anyway. I have been on B12 injections for a few years. I don't absorb it properly but tests show I probably don't have pernicious anemia. One theory is my system was damaged by the use of anti sickness meds in my pregnancies. I would try the tablets and sprays for a while and then ask for a retest. If your levels haven't gone up then you know its an absorption issue and you need injections.

I am one of those people who buy B12 from Germany.

When I was just getting one injection every 3 months I spent the last month feeling crap and, although the injection helped, my levels had dropped too low for one injection to be enough so I was getting worse month on month.

When I was waiting 3 months, I was extremely tired and low with extreme anxiety, and getting pins and needles in my back, feet and hands.

Now I give myself one injection a month and am fine. If I leave it longer (I have tried) after about 6 weeks I get the first sign which is a patch of tingling/pins and needles on my left shoulder blade.

It works for me. Had to buy 100 ampoules though so have enough to last me a few more years. If necessary because I can't get them any more I will travel to buy them.

I do admit though that there are some people who insist they need them at least daily which I also feel must be some sort of control thing - a bit like people believing that smoking calms them down when all the science says it does the opposite.

Mine was around 300 and was told it was fine as it was “within range”. I was given a course of injections anyway after I kicked up a fuss about it, and did feel a lot better. But then they stopped letting me have them as my levels were ok and I had no intrinsic factor antibodies (that show a problem with the stomach lining like a PP has).

I now take sublingual tablets which seem to work (when I remember them) as my levels are usually up at 800-900 whenever I’m tested. Plus I don’t have the pain of injections any more!

I take Jarrow B12 (methyl) which comes in various strengths. I get the tropical ones which are the strongest.

My levels were 63 when they agreed to treatment. I'd been having neurological symptoms for a while by then. I don't absorb it and am deficient in a lot... including folic acid which is needed for B12.

I was told I'd need it every 8 weeks, and even though my symptoms regularly return around 7-8 weeks my GP won't do them any close together than once every 12 weeks, as they say my levels are now fine at around 290-340. Originally I was told 600-900 was ideal.

I also have pernicious anaemia. I don’t remember what my levels were when diagnosed. I have injections every 8 weeks and feel rough for a week before the next one is due. One GP tried to put me on 12 weekly but I refused saying I was already suffering for about 2 weeks out of 8 and was not prepared to suffer neurological damage

I started having them and felt brilliant. Less foggy, no hormonal headaches, focussed and positive

I seen a specialist for this, unfortunately he passed away but his knowledge was outstanding. He taught me and a couple of family members to self inject as his clinics were miles away. We had one dr on the NHS who was very knowledgeable in this, he's now retired. Both treated the patients symptoms above all and that determined whether the injections were prescribed daily to 8 weekly. NHS now seem to encourage 12 weekly.
You can have high levels but still be symptomatic. Not everyone gets the benefit from the injections straight away, it varies how frequent a person will need to be injected. It's also dependent on the type of b12 you're injecting.

I have B12 deficiency, it has taken most of the use of my legs & left me needing walking aids & a wheelchair when I need to travel more than 10 metres, my level was unreadable when I lost all sensation in my legs & even after self injecting for a year it hasn't come back. Do you know you need cofactors to absorb the B12? You need 5mg folic acid, Vitamin B complex, magnesium & vitamin D as well. You need to have your iron & thyroid levels checked as well because they all coexist together & one being out can affect the others. Ideally you need your B12 to be a minimum of 300 but for some people that can be too low, the NHS only recognises deficiency as being below 150 which is critically low, best thing to do is join one of the B12 groups on Facebook.

I had a horrible range of non-specific symptoms that doctors couldn't work out (and didn't take seriously). My b12 was around 275 which was low but not considered out of the normal range. (Ranges vary across labs so not very useful to compare them on MN).

By all means try supplementing, but be aware that b12 can float around in your bloodstream but not get into your cells. If you supplement within 4 months of testing it can skew your results so the retest strategy suggested upthread is risky.

What finally got me my injections was having a private active b12 test (NHS don't do this). This tests what actually gets to your cells. Mine were still on the low side of normal, so personally I don't think the ranges are helpful in the UK. In other countries "low" is much higher. My injections slowly gave me my life back. Looking back I was so unwell, and it is amazing that the lack of a simple vitamin caused all that.

Thanks to everyone who has posted their experiences. @Nat6999, I’m so sorry you have been so badly affected by your deficiency, that’s really shocking. I hope that the sensation will come back for you. I rattle! I take D, K2, boron, magnesium, A and folate! Thyroid and iron levels are fine. @NotN0wBernard, yes I did think that regards re-testing. I think you need 3 months of not taking it to see a proper result but will check that out - thank you.

Not sure now that there’s much point in a discussion with GP but will see next week. Might just be best to supplement and see whether I feel any better. Don’t know. As someone said, huge differences between acceptable levels in different countiries.

@NotN0wBernard

I had a horrible range of non-specific symptoms that doctors couldn't work out (and didn't take seriously). My b12 was around 275 which was low but not considered out of the normal range. (Ranges vary across labs so not very useful to compare them on MN).

By all means try supplementing, but be aware that b12 can float around in your bloodstream but not get into your cells. If you supplement within 4 months of testing it can skew your results so the retest strategy suggested upthread is risky.

What finally got me my injections was having a private active b12 test (NHS don't do this). This tests what actually gets to your cells. Mine were still on the low side of normal, so personally I don't think the ranges are helpful in the UK. In other countries "low" is much higher. My injections slowly gave me my life back. Looking back I was so unwell, and it is amazing that the lack of a simple vitamin caused all that.

Please could you tell me where you get the active b12 blood test from?