What is your B12 level?

[kissmelittleass]

Mine came back recently as 382 which I'm told is normal, a bit down from 15 months ago though as it was 430 then.
Not sure if I should supplement or not for a few months I'm vegan, anyway just wanted to get an idea of what other people's B12 levels were to see if there similar to mine!

@Lellochip

Thank you for that valuable information. Can my number be converted or is it meaningless? I want it to be the same as the NHS measurement or else I can't compare.

Thanks so much 😊

In the 1000s also because I'm on regular B12 injections too

Several of you on here need to kick your doctors backsides.

If you are symptomatic, regardless of B12 levels, then they are meant to try a "therapeutic trial loading dose of B12 injections" if that helps your symptoms, that's your diagnosis.

We went through a battle over this for my DD, she was extremely ill at the time & they were doing sod all to help bar throw hardcore unlicensed fir kids drugs at her, but I had to fight tooth & nail girl a vitamin injection because of medical ignorance 😏

DDs B12 was 412, that loading dose several doctors insisted she didn't need, got her out of a wheelchair in under 2 weeks. I cannot stress enough how important it is that they trial B12 injections regardless of blood results. NHS tests measure ALL B12, both active & inactive(which your body can't use) so have no bearing on symptoms at all & are recognised by NICE as inaccurate up to 50% of the time

To the person showing levels of 200, your doctor is an negligent arse. You should have been put in urgent injections!! My DB had a stroke as his GP failed to do this too, so do not let this go

This website & linked Facebook group were a godsend to us when fighting for treatment & diagnosis...

www.b12deficiency.info/

& to add to Lego's comment

Yes some HCT have ridiculously low acceptable B12 lowest range level as low as 110 in some areas (Lancs I think). There is however a NICE National rate or 200 that overrides all local guidelines & symptoms override blood tests for getting treatment. Ignoring this, which too many doctors do, is officially negligent

Lello!

I've found filling in this can help convince doctors...

Mine was 57, now on tablets and have been since April . GP said jabs not necessary .

😱 this makes me so angry. Your GP is a negligent arse

I don't know my level but I went to hospital under neurological care for partial seizures. The neurologist said it could be because my b12 was low. I then went on injections for 3 years (every 3 months) and my seizures went to maybe once a year.
My doctor then said my levels were ok and took me off the injections..since then my seizures are every 2 weeks for the last 2 years!
I told my doctor that it Must be connected but nope no more b12 injections allowed and oral don't do anything. I still get iron infusions annually though.

I need to Google more information on getting my own and injecting because I can't carry on with these seizures they are really effecting my life.

Oh as well as low iron needing infusions, I also am on folate tablets for low folate.

My levels were 430 so more than fine by UK standards. Like another poster, I however had a very high result looking at the size of the blood cells, with the main indication for this being B12 deficiency.

I did my own loading. I felt worse at first but persevered. it took 3 loading doses to start feeling half normal again and another 4 months to feel I was in control again. I self injected once a month but found I was struggling again the last week. Experts on the site said you shouldn't wait for symptoms to reappear to inject so I do so every two weeks. The first sign that I'm low is breathlessness and muscle weakness ie. anemia.

Lowest mine has been is 473, highest 637. I do try to take a supplement regularly.

@vivainsomnia

Same here, 3 monthly injections are nowhere near enough, so I usually SI fortnightly too.

Not doing so well with taking my other supplements needed for my B12 to work properly at the moment due to my pancreas taking a bashing thanks to a seemingly mild dose of Covid. Thankfully it's getting easier, but it's really reminded me how ill I can get without enough B12, folate, B vits, iron & potassium. Unfortunately, as I'm sure you know it's rare that doctors give that advice along with the injections though, that's if they even treat it at all 🤦‍♀️

kissmelittleass

TimeTravellingBrain wow that's a great level for a vegan and no supplements either!! I'm vegetarian but I actually only have milk and kefir I don't eat eggs or cheese so I miss out on b12 there.
What are you eating that gives you an excellent level of b12 without supplementing? I'm very interested in your diet!! I'm wondering if I'd feel less tired with a higher level of b12 think I will start supplementing for a few months with a low dose though

Some of the foods I eat are fortified with b12 though I don’t eat huge quantities of them. Pure vegan spread, Violife cheese, Oatly oat milk...and apart from that my diet is pasta, rice, potatoes, loads of veg, loads of fruit, loads of beans (kidney, cannellini, black, etc) and chickpeas. I do occasionally eat ground flaxseed.
I suspect b12 deficiency is very common but possible not always related to diet. Hereditary maybe? A member of my family ran an abattoir for many years and ate meat every day but is now on b12 injections. As far as I know, the only reason meat contains b12 these days is because the animals themselves are given b12 shots. Maybe the synthetic b12 isn’t as well absorbed by them, or the people that eat them. I have no idea why my levels have always been fine. GPs always test me for anaemia when I mention I’m vegan, and they blame any ailment I have on the fact I’m vegan, but my bloods always come back absolutely fine (apart from vit d, which I was lacking due to always being smothered in sunscreen. I now spend 15 mins outside without sunscreen every sunny day and my levels are fine.

You need an active b12 test, as a PP said. That’ll give you a better picture.

[quote Golden2021]**@Lellochip

Thank you for that valuable information. Can my number be converted or is it meaningless? I want it to be the same as the NHS measurement or else I can't compare.[/quote]
You could convert it (there are websites that switch between the different measurements) but as far as I know, the NHS don't test active B12, so I'd be surprised if you get a number to compare it to.

Did you just have active with Thriva, or the normal B12 too?

@Golden2021 That active result from Thriva is well within normal though, is there a reason you're seeing the GP about it? If you think you've possibly got a deficiency for other reasons (i.e having symptoms) I'd be tempted just not to mention the Thriva result. I've found my docs to always seem fairly unimpressed with private tests, and while I've got them to agree to run their own off the back of a low Thriva result, I'd worry a normal result would give them an excuse not to bother?

No, thanks to your info I've been reading up. I didn't realise that active is completely different! I'm quite pleased with that result. I will still speak to my GP as my ferritin is 30 and I am getting symptoms from that.

Just incase anyone isn't aware of this... Even an active B12 Test can very occasionally show a false normal. My DDs did. As above though, her trial loading dose of B12 got her out of a wheelchair & fast. Her official NHS diagnosis is this, though it's more likely PA as it's rife in both mine & her dad's family. Treatment is the same though, so the name doesn't really matter...

www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/causes/

I started taking a b12 supplement now over the last few days 10ug a day, my surgery only won't retest b12 more than once a year but nurse did say at 382 I didn't need to supplement as a vegetarian? I'm going to keep taking it anyway, is there a point I stop taking it though? Considering in my original post that I got told off a few years ago for having too high a level of over 800.