Does anyone know much about B12 deficiencies?

[SausageChipsandBeanz]

I have wondered for a while now if I may have a B12 deficiency or at the very least be borderline/very low normal.

I have many of the symptoms of the deficiency and have struggled for years. I also have a long history with low iron and very low ferritin levels and my GP left me with ferritin below 5 for years after the iron upset my stomach and she couldn't offer up any other advice. I had an iron infusion 4 years ago alongside fixing my very heavy periods.

My B12 has always been around 300 and because that has fallen within the normal range my GP has said no action required. (range was 200-700) My folate was 3.3 last year but as there were no ranges from that lab she said she couldn't comment.

I have been feeling worse than ever and from everything that I read online it says not to supplement with B12 as this may give false blood test results and so I haven't supplemented with anything B12, folate/folic acid or any form of iron.

I took the decision last week to go ahead with the Thriva at home private blood test. It has returned with Active B12 levels at 54 (range 70-150) and my Transferrin Saturate of 50% (range 25-45%). Another thing I find strange are my Folate levels, they were just 3.3 less than a year ago but last weeks test has returned at 22 yet I have not been supplementing or eating anything with high levels of folic acid (infact my diet is quite low in these as I have IBS and have to be very careful what I eat), so not sure why such a leap. I have looked back and my folate has never been higher than 6.

To talk to a doctor at Thriva they want £35 so I am going to try my own GP first to see if she can look into this for me. The problem is that I find everything to do with B12 deficiency utterly confusing.

Does anyone on here know much about the confusing world of B12, folate and iron deficiencies? Can anyone help and is it worth me pursuing this with my GP? I can't afford B12 shots privately so not sure what to do and I don't want to simply supplement if that is not going to benefit me in the long term.

I just want to feel better and not utterly utterly exhausted with a myriad of other health issues.

I don’t know much, but look for specialised fb groups - I keep getting fb posts about b12 in my fb feed occasionally for some reason (well, the Big Brother must know something that I don’t haha). These fb groups can be really helpful. When I had some other health problems, fb groups specialising in those health problems saved my life - people there will recommend doctors and pathways.

I'd never heard of B12 til I found out I was deficient, having been really unwell for several months. In the UK, the 'normal' range is actually very low and you can have symptoms and still be in the normal range. Luckily my GP realised this, arranged for me to have injections, and that sorted everything out.

I can recommend this FB group:

Pernicious Anaemia/B12 Deficiency Support Group

are you sure they’re all using the same assays? You probably can’t just compare the numbers as easily as you think. The person ordering the test should be the person telling you what the results mean so you should probably go back to Thriva and ask for a proper interpretation.

Thanks, I'm not on FB anymore but will go back on and have a look.

Could I ask what your levels were and what persuaded the GP that you should have injections? My GP has just referred me for blood tests

I have to pay another £35 to speak to the doctor about the test results which I don't really have at the moment and why I would like to talk to my own GP before spending out any further money as I may well be barking up the wrong tree so to speak.

I assumed all UK labs go by the same ranges regardless of the testing lab? I have checked all the blood tests I had done against my most recent NHS ones and the ranges are all the same so I imagine they are similar?

I have never had the Active B12 or Transferrin saturation taken via the NHS before so have nothing to compare it against but a quick google tells me the ranges are the same within the UK as the ones stated on my report.

My friend was fortunate enough to get the injections via the NHS and now feels so much better but I have read online many people struggle getting help via their GP and have to purchase online and self-inject, I have needle phobia so I don't relish the idea of doing that.

Do you feel much better now? I am fed up feeling so crappy every day.

I would persevere a bit with the gp as if they are low then you need to investigate the underlying cause such as diet or pernicious anaemia.

I would highly recommend the vitabiotics b vitamin complex. They are cheapish and often in 3 for 2 and you should feel the benefit after ab 3/4 days of taking them. I found that I felt energised, calmer and happier taking these so def worth a go once you’ve spoken to your gp.

NHS (gp) usually tests for total B12, rather than active B12. Total B12 includes all b12, including that which is not available to the body, so active B12 is a much better measure of whether you are deficient. Your test result should say the range, and whether your result is below the normal range. If it is, you are deficient. If the test result clearly says you are below the normal range, then you can take it to your GP, who may want to do some further tests, or who may put you onto injections. Do join the HealhUnlocked pernicious anaemia / b12 deficiency forum - and ask your question there. There are some really expert posters that can help you.

Thank you, I did get a bottle of B complex in then read not to take until all blood tests have been taken, I'll wait till I have spoken to the GP then hopefully will start on them.

My Active B12 came back as 54.9 and the range was 70-150. I had lots of tests done at the same time such as thyroid and HbA1c but only the Active B12 and the Transferrin Saturation were flagged up in red.

I will look on HealthUnlocked, thank you.

Hi i've had b12 deficiency nearly 20 years now. It could be that you just need the loading dose of injections (which is 9/10 over a short space of time) and then the sub lingual tablets to bring your levels back up and that might be it. Or you might need the injections forever (like me). I have them every 12 weeks through my GP (although I do know some people who have them more frequently) They used to do it on prescription and I sorted it, but they stopped that and it is so much easier being able to rock up and it's there. There are related things that go with this though..... i've been tested for coeilacs, low folate and I have a goiter all of which go hand in hand with b12 deficiency. When you are tested, they will also test your intrinsic factor in your stomach, if you don't have the intrinsic factor then you have more serious (but still treatable) pernicious anemia. If you are taking proton pump inhibitors like omeprozole this can also reduce your b12 and you will to get the tablets to sort it. I hope that helps good luck!

I have injections through my GP and you do need to be careful because it is possible to overdose on the injections. I did it once because I was combining with heavy supplements because I just wanted to feel well.

I really wouldn’t suggest self injecting for the above reasons and honestly the b vitamins complex works really well and quite quickly. If you do want to try injections but can’t get them through your GP some wellness centres do them which although doesn’t have the same checks and balances as a GP it may be better and safer than self injecting. But please remember these are classed as a supplement so don’t have the same regulations as a gp administered one.

I would recommend the RnB protocol by B12oils. RnB is riboflavin and B12. It aims to maximise B12 plus its cofactors so you get fully functioning B12 processes. They use typically applied oils which are supposed to work as well as, or better than, injections.

Ask your GP for further tests (celiac?) and b12 injections. The nhs is so rubbish at treating low b12, you can be very ill and yet the nhs will tell you your levels are fine. Same with iron. Lots of people resort to buying the b12 injections directly from Germany and doing them themselves. Other countries seem to have a much better grip on treating b12 deficiencies

Thank you.

I am really hoping my GP will take this seriously as I have had enough of feeling like crap for so long. I have suffered with gut issues for decades and I have had several colonoscopies and gastroscopes, last one was 6 months ago which came back clear for coeliac disease but I can never get my digestive system to behave no matter what I try, I have always been certain that something is driving it.

I will ask for the intrinsic factor test?

Even though I have upper and lower gut issues I have never taken PPIs as I know they can cause some long term issues.

I have to admit I don't really like the thought of self injecting or purchasing from some unknown online supplier, I would prefer to have them some other way but if supplementing would still help I'd rather try that first.

Thank you, I will look into that.

Also ask for Gastric Parietal Cell antibodies test and maybe ANA (if GP willing)?

GPCs produce intrinsic factor I think, so antibodies to GPCs can also cause B12 deficiency, similarly to antibodies to intrinsic factor itself)..

I did have my last gastroscope only 6 months ago which was thankfully negative for Coeliac disease.

I will add that on my list of things to ask her, thank you.

B12 can be purchased from reputable online German pharmacies, as it is over the counter in Germany. It works out at about £1.36 per ampoule at the moment. You can also get aesthetics clinics to give you private B12 injections (as a ‘wellness boost’ - not to treat B12 deficiency) and that costs from £45 upwards per injection….
BUT make sure you get all blood tests done and discussed with GP first!

I mean topically applied, not typically!

I have pernicious anaemia and a history of iron deficient anaemia and was getting B12 injections from the NHS every 12 weeks, the only problem was that for last last 3 weeks of each 12 week cycle it would start to wear off my GP surgery refused to inject more frequently, a friend’s surgery did do her more frequently and I was thinking of switching then Covid struck and I couldn’t get my jabs. I decided to try the lozenges as a stop gap, rather than buy jabs online and I find I get on better with those. Once all your blood tests are taken you could always buy some and give them a try.