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’ve just checked these private ones against my last NHS bloods.

I’ve never had the Active B12 taken via the NHS so no comparison.

Folate with private is measured as nmol/L in comparison NHS was 3.3 ug/L
Ferritin via private is 90 ug/L compared to NHS at 61 ng/mL

I have only ever had serum B12 taken via NHS and the last result was 326 pg/ml and range was 197-771pg/ml

I will have to google to see the difference with the units.

It’s all so confusing to me 😵‍💫

b12 is in quite a few things you don’t expect it in. My other DD kept having blood tests because they suspected b12 deficiency but her tests kept coming back fine. Turns out on the way to the tests she was making sure she was hydrated with Powerade or one of those types of drinks. Which was falsely elevating her b12 😂 So check and double check what you are eating/drinking…

if you want a clear picture then take folic acid for a couple of weeks and then get your blood tests done, if you do have a b12 deficiency it will then show up.

Folic acid actually supports the uptake of B12 so taking folate supplements may mask a deficiency by creating a temporary increase in B12 levels, so don’t take any supplements at all :)

This is where I get so confused, I’ve read so much on this and the more I read the more confused I am - do I supplement/do I not or should I stay exactly how I am before any further testing. There appears to be so much conflicting advice regarding B12, it appears to still be such a complex and poorly understood condition.

honeyandbutterontoast I only drink water and I don’t believe my diet is very high in either B12 or folic acid as I have digestive issues so stick to quite a basic diet.

If you want the GP to test, don’t take any supplements as it will give a false reading for the blood tests.

https://pernicious-anaemia-society.org

The Pernicious Anaemia Society have lots of information and it’s easily accessible. If you join (I think it’s about £10 a year), they will help you/advocate for you if that would be helpful.

I have B12 deficiency and feel absolutely rotten even with injections, so I hope you get some help asap.

Thank you, I will join, I need all the advice I can get right now.

@SausageChipsandBeanz they are really good. I hope you get sorted Asap.