Normal serum b12….low active

[oily1601]

Hi everyone

The last few times I’ve had my b12 tested,my serum has been normal but my active is quite low.

Does anyone know why this is?any help would be much appreciated

[wedgewood]

That’s because the blood serum result can contain up to 80% inactive B12 , which cannot be absorbed by our cells . The active test is more accurate .

[oily1601 in reply to wedgewood]

I had the active b12 done with medichecks….the serum b12 was nhs.

Doctor didn’t seem that concerned.Don’t know what to do really

[wedgewood in reply to oily1601]

Well do you have B12 deficiency symptoms ? If you do , your doctor should be concerned . You don’t mention any .

The serum test is cheaper . But some NHS surgeries do the Active B12 test . ..

[oily1601 in reply to wedgewood]

Thanks for the quick reply.Yes I do have many symptoms….Will have to go back to my go and hopefully can can more tests done.

Thank you

[wedgewood]

The reason for your low B12 coupled with your symptoms must be found . The most common reason is Pernicious Anaemia , an autoimmune condition which must be treated with B12 injections FOR LIFE . I’m afraid that the medical profession is quite ignorant on this condition. That’s why this forum was started .

There are other reasons for B12 deficiency. Your doctor must find the reason .

[BirdlessBox in reply to wedgewood]

I think mine came from bowel issues all my life, not absorbing properly. No-one ever took enough interest for me to get a definite answer.

[Cornwaller]

What was your serum level? What was the normal range you used to assess it?

[oily1601 in reply to Cornwaller]

My serum level was up over 700,with 900 being top of the range….so really don’t understand why my active b12 is so low

[wedgewood in reply to oily1601]

It’s just suspicious that you have B12 deficiency symptoms and a low active B12 result . The blood serum result can contain up to 80% of INACTIVE b12 which your body cannot use .

[oily1601 in reply to wedgewood]

Hopefully I’ll get some sense when I go back to my gp and get more tests.

Thanks for your help…much appreciated

[wedgewood]

I hope that you get some help from your GP . Trouble is that the medical profession is mostly very ignorant on the subject of B12 deficiency. 🍀🍀

[Jo5454]

Hi, what is your Active b12 level?

It could be that the serum level is falsely reading high?

Before a functional b12 deficiency diagnosis I had a b12 serum level in high 400’s, few wks later itbwas tested and at 260 ish, and I’ve recently requested old notes and looks like it’s always been in 200’s in past, so think it was an inaccurate result.

The Active b12 is the best indicator especially if you have symptoms too. Or also, if you have a functional deficiency, it may well read high, but not necessarily be getting into the cells? Have you had a methylemonic acid (mma) along the line? That can be useful in diagnosing a b12 deficiency, Again, if its not high, doesn't mean you haven't got a b12 deficiency!

By the time my Active b12 was 27, mma had gone way overange at 708, so they had to accept I had a functional b12 deficiency that didn't fit into the nhs ranges! After trialling tablets instead of injections, neuro & other symptoms severely came back and my serum was 600, so these numbers don't always reflect what's going on inside us!

Have you had vitamin d, folate, iron, ferritin and full blood count recently? Hopefully your Dr will check all of these and be extremely helpful! But always remember the support you have on this site and if you share your results on here there’s always plenty who’ll help. Hope you soon get an apptment and a little bit further…😀

[oily1601 in reply to Jo5454]

Hi there

Active B12 was 29.6….showed this to my gp and she didn’t seem to care.My folate and Vit D are all good.

I’m going to go back there next week and push for more tests….hopefully she will be more helpful.

Thanks

[Jo5454 in reply to oily1601]

Hi, good to hear folate & vit d fine. That Active b12 is low, about the same as mine was then. I was told by St Thomas hosp who did a postal private test that between 25-70 the sample will be tested for MMA too, under that it's a definite b12 deficiency requiring treatment. At 29.6 yours is pretty down there isn't it. The probable reason your Dr didn't care was because many of them know diddly squat about it, yet feel that makes them able to decide whether or not we be treated!Have you ever had a helicobacteur pylori test(stool)? One of the things worth checking and ruling out as a cause of low b12, which can be treated. Homocysteine test can be useful too...available as postal test online from this yr.

I'm off to tackle Dr this wk again,so good luck with yours, may the force be with us!

[oily1601 in reply to Jo5454]

Hi…I will definitely look into getting those tests done.Thanks so much for your help.

[Jo5454 in reply to oily1601]

You're welcome. Yr Dr should do an Intrinsic Factor test-if its positive, its PA, but if negative doesnt mean you havent got PA! They may do parietal cells test too, so Id aim for those first.If you don't get joy the homocysteine test is now available from Food for the Brain Foundation online. A pinprick test with only few drops required, for £50. Mma is available as a urine test from Neovos, again £50. They're new to offering that. Other places have been more expensive, I found them great to deal with. Some peoples Drs will offer this one,but few and far between, always worth a try though-any money saved a bonus!

[Jo5454 in reply to oily1601]

Hoping you got somewhere with your Dr this week...

[Dancer57]

Hi

I have exactly the same problem.

My total B12 has been approx 424 from Sept 23 to March 24. I have Autoimmune Thyroid Disease and was quite ill end 2022 with deficient folate levels plus other things, under the supervision of a nutritionist I increased my dietary intake of foods containing folate and B12.

Out of curiosity I tested my Active B12 Sept 23 and I was shocked as it was 28.6 Ref >37.5. I also tested MMA which was raised at 3.14 Ref <2.

My then GP was not interested as total B12 was in range.

Now similar problem, although more helpful, with new Surgery. Long story but managed to get my MMA tested which came back as raised again. NHS wouldn't test my Active B12 so I did it privately second time, result was it has dropped even lower to 27. Had IFAB test twice, negative, but positive for AB to stomach Parietal Cells.

My mum had PA.

So I am referred to Gastroenterology who say I don't have a b12 deficiency as in range. I don't have PA because of negative IFAB test. So test for Coeliac if this negative suggest I take antibiotics for SIBO which I won't be doing without a test to rule it in or out.

Worth having a word with GP in the hope he/she looks into this further for you.

Good luck.