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 recommend health unlocked it's a great website

I would start with your GP. I had low B12 last year and she arranged for the injections. They're done into the muscle so are quite painful so I wouldn't consider self injecting.

Are the lozenges freely available or do you purchase them from a particular place?

Thanks, I’ve just joined.

I must admit I couldn’t ever imagine self injecting as I do have an awful needle phobia, I couldn’t even do the finger prick blood test without feeling faint, I had to do the new arm blood draw that Thriva now offer and even the had to get my husband to push the button on it lol.

When by b12 was low (it was 17!) I had neurological difficulties including memory loss, I couldn't finish a sentence, my hands shook and I couldn't grip anything. I was so poorly, but didn't really realise as it was a very slow decline.
It turned out I have coeliac disease and wasn't absorbing b12. I had a course of injections and stopped gluten and I've been fine since. It took about a year to fully recover.

Yes. Your GP won’t take kindly to being asked to interpret results that have come from a non NHS lab. Mine was reluctant when I used Regenerus Labs to try to get to the bottom of my repeated UTIs

Your gp should do the shots for you.

I won’t ask her to interpret them, I’ll just explain my symptoms (again), that I’ve had some private bloods taken, some of which have returned as abnormal and ask if it’s possible for them to be repeated on the NHS for comparison and if they are the same results I will then ask her for advice and where we go from there.

Sorry I didn’t mean interpret as such. The tests were showing a bacteria that the NHS labs don’t test for. Don’t think she was happy that I’d had the private test

Oh sorry, I didn't see the bit about your UTI test.

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.

You cannot overdose on B12. Any excess in your system comes out in your pee. That’s why some patients (who can’t absorb it very well via diet) take a very high dosage per day, so that the tiny amount that does get absorbed, can be enough to help

Historically that was the belief that there was no upper limit of toxicity but that has now changed. It is very unlikely to have effects from the supplements at the recommended dose because the dose isn’t big enough but you absolutely can overdose when using the injections because I did when combined with high dose supplements. It caused, nausea, upset stomach and severe itching.

Some PPs are giving bad advice here, OP should not supplement with any oral b12 etc while seeking a diagnosis as doing so will cause a false negative in blood tests. If OP has the kind of deficiency that’s not caused by diet (hard to not eat enough b12 through diet unless you’re a vegan who doesn’t supplement) then oral b12 will have no benefit anyway as the stomach can’t absorb it, although it will raise the level in the blood and cause the false negative.

I hope I’ve explained this properly, I just didn’t want OP to take a supplement and muck up her blood tests and not get a correct diagnosis.

Yes I am fine now. All this was 10 years ago. It took approx 6 months to be properly better though, and my recovery certainly wasn’t linear.

I got my injections on the NHS, and still have a top up at the surgery every 12 weeks. I often have a private jab too, just for good measure, almost anywhere that does Botox will offer B12 injections, I pay £30 per shot.

Agree! Avoid b12 tablets for now as they can give a false healthy result. Await GP input

Just to quickly add incase anyone knows anything about this, I've just checked my previous bloods via the GP and notice my IgA was flagged up as being low, could this also be linked to low B12 issues?

Echoing those who are raising the issue of functional B12 deficiency. Ultimately means your body can only absorb it if injected, not taken orally.
If it’s within budget, it might be worth paying for a private test. Medichecks are a good company I’ve used before.
www.medichecks.com/products/methylmalonic-acid-mma-blood-test?srsltid=AfmBOorceQT1w6E8R86wG68dYayORnIjNhJXhb44uS7EeHP4EV0slm-W

If your folate levels are low this is giving you a false b12 reading. I had this exact issue with my DD a few years ago. As soon as her folate was at the right level her b12 levels plummeted (they work in conjunction) and she could then be treated for b12 deficiency.

Her and I have to do weekly/fortnightly injections at home and tbh I hate doing it, but very quickly get very ill without it.

This is what I am pondering atm, I can’t understand why my folate has gone from 3.3 to 21 in less than 10 months and without any form of supplements or diet high in folic acid. I’m going to have to push my gp for answers if she refuses further testing.

what units are each set of results in?

Sorry, I’m not quite sure what you mean by units, do you mean the ranges?

Greybeardy

Sorry, I just realised what you mean. My brain is just mush these days 🙄

not the normal range - the units -mcg/L or nmol/L for example. Are you actually comparing like-for-like?

so are your old NHS tests in the same units of measurements for the folate?