Confused by GP's answer

[Doddlebug]

I was initially diagnosed with Pernicious Anaemia in 2017,received 5 of 6 loading injections - went for 6th injection, asked how I felt, I said alive and was then told I didn't need any more injections. I still felt dreadful hands and feet felt odd, stumbling like drunk (teetotaller) was ashamed in public. In August 2021 blood test said 'restart B12 injections?' Loading 6 given then every 3 months. Symptoms persisted plus my left hand was almost useless and I was having falls. I asked GP if I could have injection more often as I am from from autoimmune family, thyroid, coeliac, diabetes 1 etc. she agreed. Symptoms persisted and in April 2023 I complained and a blood test was done - results showed B12 as >20 00 GP said Haematologist said change injections to 3 months! GP said >2000 shows you are getting B12 injections , so what did I want. I said if NICE advice was 'do a second blood test as the liver might be storing as something else could be wrong' then I wanted another blood test, she agreed. Where do I go from here? What if the blood results are the same? Does any doctor understand PA?

[Gambit62 Administrator]

the BCSH guidelines on B12 and folate deficiency say injections for live for permanent absorption problems with no further testing- 2 months frequency for neurological involvement.

onlinelibrary.wiley.com/doi...

Results of serum B12 are extremely difficult to interpret post injections so better to go by symptoms. One thing that can make serum B12 seem okay is that the B12 can be bound to other proteins in the blood that prevent it being accessible by cells so high serum B12 doesn't really mean anything.

[Sea-blue]

Hi Doddlebug, sorry to hear you’re really struggling. From what I understand and have read and I’m not medically trained, the enterohepatic system is very complicated. If you have any malabsorption issue with B12 you prob don’t have any B12 stores in your liver . I stress this is just from what I’ve read on google scholar and papers on this system in our bodies. The blood test at the doctors covers both types of B12 ie active that is metabolically available to us ( about 20% of the whole amount they measure ) and inactive which isn’t metabolically available to us. In a nutshell every one who has B12 problems is different as are diabetics. The docs should be going by symptoms not blood test levels as this is not indicative of WhatsApp actually going on. We haven’t a daily test like diabetics do to test out B12 at cellular level and then they administer insulin . Diabetics still have symptoms and struggle with many health issues that arise from being diabetic even though insulin is available daily for them . We are the same but it’s not seen like this if you’re B12 deficient / PA diagnosed . Heaven knows why. This is why many people SI . I’m SI but I still have symptoms. The medical brigade is woefully uneducated about it during their training and it is a hard system to get your head around too. Plus there's and this is just my opinion, there’s no money for big pharma with B12 liquid

[Doddlebug in reply to Sea-blue]

Thanks Sea-blue, what you say makes sense. I think I will insist on keeping to bi-monthly injections.

[Cherylclaire Forum Support]

You could perhaps have your methylmalonic acid (MMA) tested. This generally drops down into range during the six loading injections, but not always.

In those with B12 deficiency, MMA builds up in the bloodstream as it's awaiting link-up with B12 that doesn't happen as B12 low. This can mean MMA gets to very high levels in those not treated for a B12 deficiency. So MMA will respond immediately to a sudden input of B12 - and would be back in range by the time the loading dose of 6 injections is completed.

But this doesn't always happen.

If there is a problem with the link for instance, B12 and MMA will still remain in the blood and not journey on to cell/tissue in sufficient amounts to improve. Measuring serum B12 alone would not give any useful indication in this case.

My MMA, although "raised" not "high" on testing, remained at this level for three years despite very frequent B12 injections. On the 6th test, it was finally mid-range.

Elimination: first, renal problems must be ruled out as cause for any raised MMA results, then later, small intestine bacterial overgrowth (SIBO) can be tested for: a fasting breath test series over 3-4 hours. These bacteria can rob you of B12 and other vitamins and eradication can be complex.

It is not useful for a GP to measure what has been put in (B12) if it then doesn't get to where it's needed ! Worth an ask ?

In any case, neurological symptoms should be treated with every other day (EOD) injections until no more improvements can be gained by this, then one B12 injection every 2 months. Nerve repair can take quite a while.

I was given 2 injections a week for six months on my GP's request, based on a diagnosis of functional B12 deficiency due to raised MMA despite B12 deficiency treatment by injections - and this was confirmed by the testing laboratory. My GP had already had renal function tested and ruled out as a cause.