B12 - can anyone advise me on my blood results

[badgersbadgerseverywhere]

I’ve applied to join B12 Wake Up on Facebook and am waiting to be approved but would like some advice while I wait.

I was sent for blood tests because of increased fatigue and when I checked them yesterday they were all marked as ‘Normal’. However, as my mom has B12 deficiency caused by inability to absorb it through her stomach which was missed and has left her with lasting damage, I asked ChatGPT what my result means and it said my number is classed as ‘very low’ by essentially all experts and is generally viewed as requiring treatment.

My level is 71 pmol/L which according to the NHS app is within normal range. I’ve found it very hard to compare my numbers with those on posts I’ve searched on here because the unit of measurement seems to have changed - eg people are talking about being deficient when their results are in the hundreds, but they don’t mention the unit of measurement just the figures. My B12 in 2023 was 232 ng/l, which as I say is a different unit of measurement.

I have many symptoms of B12 deficiency however I also have MS which causes the same symptoms so it’s very hard to unpick what is what.

I’m scared that I may suffer lasting damage from a B12 deficiency but I’m also dreading having notoriously painful regular injections! I know my mom dreads them and also she doesn’t seem to get them often enough through the NHS and gets recurrence of symptoms before her next jab is due.

I have an underactive thyroid which apparently is connected to low B12, and I also have no gallbladder which leads to low stomach acid - another thing connected to B12 deficiency.

Any advice and experiences would be very welcome thank you.

Hi OP, I was prescribed a loading dose of 6 injections about 5 years ago for a level of 67 on a blood test. My doctor was happy to prescribe them and I am now going to have them forever, every 12 weeks. The injections are not very painful to me at all. The nurses seem surprised when I tell them it didn't hurt much afterwards! I've found other injections much worse, especially steroid ones! They were painful. My levels are now 600+ and all my symptoms such as tingling, pins and needles, blurry vision, exhaustion have gone fortunately. I did actually see a neurologist years ago to rule out MS because I know lots of the symptoms overlap.

Thank you. That is reassuring that you don’t find the injections too bad. I am fine with blood tests and found the Covid jabs painless.

I had a B12 deficiency. I didn't have injections but instead had a course of tablets, one a day for three months. After a couple of weeks the tiredness and forgetfulness that I was struggling with improved but so did lots of other things which I didn't even register were linked such as aching in my legs when I walked and this odd thing that kept happening with my vision. You could try a supplement with high levels of B vitamins. I take a liquid with b vitamins and iron now.

I have never had blood test but I take b12 spray everyday. If I don’t I get tingles in my feet. This all happened during Covid. I have a couple of colleagues at work who developed pernicious anemia post COVID/

I have injections and when I was initially prescribed them my level was 117. This was years ago, but when I was looking they give injections to those under 200. I now have injections every 8 weeks as otherwise my symptoms start to come back.

I had a look on the B12 society website and the first thing that comes up is a warning that if you suspect a B12 deficiency not to take any form of B12 supplement as they can give a false result? Although I’ve had a blood test already so maybe this doesn’t apply.

I eat a diet full of meat, eggs and fish so I think if I am deficient it is because I cannot absorb it through my gut, which would mean only injections would be effective.

I’ve been looking at local clinics that do B12 jabs (some advertised as painless?) and am quite tempted to just pay for a course and see. I don’t have much faith in the NHS moving quickly to diagnose and treat due to past experiences with my MS and gallbladder disease.

I have pernicious anaemia so get B13 injections every 12 weeks. Good diet but I seemed to develop a host of autoimmune conditions after my DC2 was born (severe psoriasis as well) - lots of autoimmune conditions/inflammation based conditions in my family, including my dad who has MS.

I still get some of my symptoms but I have much, much more energy and less brain fog. I was actually tested when my lymph nodes became very raised (thought to be linked to active psoriasis around my ears/scalp), when the doctor asked if I’d been feeling tired/dizzy/etc I just responded that I assumed that was normal with a 2yo and a baby!

I don’t actually find the injections too bad - I can get them without winceing which does help as often my eldest needs to be there (5yo now). Will go look up what my levels were on diagnosis…

See when people are quoting their numbers I don’t know what unit they are measured in, pmol/L or ng/L. Which makes it really hard to understand if I am deficient or not!

Are you taking anything to help address the underlying cause of nutrient deficiences? To support fat digestion post gallbladder removal bile salts are geberally recommended and to address the low stomach acid you could try bentaine hcl with pepcin. Pancreatic enzyme supplements can also help with the breakdown and absorption of nutrients.

Just checked and my B12 was tested by the NHS and was measured in NG/L at 67. The range on the test was 197-700 so I was well below that and they were happy to prescribe the injections for ever

Can’t edit my post again but of course mean B12 not B13 😂

My results before and after the loading dose of 6 injections in 2 weeks.

I asked ChatGPT to convert my numbers and it reckons mine works out at 96 ng/L now. I don’t know how much to trust Ai on this though.

I’ve never been told this although I suppose I should have been advocating for myself. I often have what I self diagnosed as ‘bile acid diaorrhea’ ie having to get to the toilet quick within a short time of eating a meal high in fat but low on carbs. I’m going to look into the things you mentioned thank you. And thank you to everyone who has replied so far.

If you have bile acid diarreah you want to stabilise this before adding acid (bentane, acv etc).

I would start with smaller, more frequent meals, moderate fat (little and often as if fat is too high it will worsen diarreah, if too low bile will pool and then dump) and up soluble fibre (oats, psyllium husk, chia seeds, apples etc). Also add the digestive enzymes (especially lipase) to improve fat digestion.

You will be able to add the acid (slowly) later once the diarreah improves. In your case I would avoid the bile salts as these will worsen diarreah.

I now take a B12 1000mcg tablet every day, effectively and 'overdose' which my body uses a miniscule amount of

I used to get the injection but was told that is no longer the go to treatment and thay most ofnus on the injection gad never had a priper Dx, it was just assumed that as the loading does worked we had Pernicious Anemia.

I had a last injection and was told to buy the tablets. Less than £20.for 13 month supply. After 3 months I had a blood test. My levels were well into the normal range. That was 7 years ago

I no longer have the energy swings, the crushing tiredness, don't anxiously wait for the 10 week as when I know I would have a good chance if an 'early' injection.

Ask for a telephone consultation with your GP. Get them to explain it all to you

How do I know if my blood test measured the active or total B12? I can’t see it anywhere in the NHS app.

I am finding it all so confusing and stressful. I still don’t know if my result is generally considered low or not!

You can get a b12 mouth spray that absorbs under your tongue and through your cheek .

Its complicated, and if you join any of the specialist Facebook groups etc pretty much the only advice is everyone has low B12, we should all self medicate with B12 injects from Germany (or it was when I was trying to research this!). I have regular B12 injections on the NHS and have done since about 3 years after my youngest child was born, I think I have problems absorbing it after being on some anti-sickness meds while pregnant. I've honestly stopped trying to work out all the levels and did I have the right test and all of that. I would try a course of tablets, it they don't work, get the injections. Try and avoid the internet crazy people.

OP if you go to Healthunlocked and join the Pernicious Anaemia group (even if you don't have PA) the lovely people there will advise you.

In Japan they consider anything under 1000 ngl as deficient, same in other countries.
In the UK the NHS guidelines and range are woefully inadequate.

And as B12 costs so little and is water soluble (so the NHS protocol 6 injections isn't enough) and prevents so many diseases I just don't understand why the treatment is so inadequate.

I agree it just makes the confusion worse. Op talk to your gp or ms specialist and get advice from them. On one of the fb groups someone was self medicating with 3 b12 injections a day!!!!

I used to buy my B12 from pharmacies in Germany and self inject.

I had chronic MS symptoms and was covered in bruises from stumbling into doors and was struggling to talk and B12 was what brought me back to life.

My body doesn't methylate B12 so if you're like me you need more frequent injections than the NHS will provide. It cost 8 euros for 7 vials. So just over a euro a vial.
It couldn't be cheaper so I don't know why the NHS gatekeeps a vitamin that saves lives in the way it does.

@BigButtons mine came on at Covid era too, along with weird buzzing in one finger and in lower legs ( like I had a battery running in there) really sore bleary eyes too and a spacey feeling . I was convinced I had MS , saw a neurologist , loads of bloods, my B12 was technically ok using NHs guidelines, but on low side- started on b12 spray plus magnesium spray on legs plus vit D and went gluten free for a few months too ( suggested by neurologist ) it all cleared up, took 9 months though

@BigButtons mine came on at Covid era too, along with weird buzzing in one finger and in lower legs ( like I had a battery running in there) really sore bleary eyes too and a spacey feeling . I was convinced I had MS , saw a neurologist , loads of bloods, my B12 was technically ok using NHs guidelines, but on low side- started on b12 spray plus magnesium spray on legs plus vit D and went gluten free for a few months too ( suggested by neurologist ) it all cleared up, took 9 months though

NICE guidelines show this.

The B12 injections are fine, not painful.