Normal Serum/Low Active

[oily1601]

Hi everyone

Has anyone any idea why my Serum B12 is normal and my active is low (39)

Any help much appreciated

[wedgewood]

Your blood serum B12 includes inactive B12 which you cannot make use of ( can be up to 80% It varies from person to person) . The active result is just the usable B12

[Jo5454]

Out if interest what is your serum b12?My serum b12 was considered normal, in the 200's, but after being convinced I'd lots of b12 symptoms I did an Active b12 which was 27 and MMA 500+ above range,indicating a functional deficiency-adequate in the blood, but not necessarily getting into cells well...just goes to shiw nhs levels dont fit all!

How are you feeling?

[oily1601 in reply to Jo5454]

To be honest,I’ve been feeling crap for so long it’s become the norm.

My serum result with the nhs was up over 500.

I’ve been taking omeprozole for years,I wonder if that’s got anything to do with it.

When I mentioned my active b12 result to my gp,she just shrugged it off….really frustrating

[Orchard33 in reply to oily1601]

Omeprazole is often responsible for stomach/absorption impairment which leads to poor or non-existant B12 absorption. It also leads to poor absorption of co-factors including iron. I stopped taking it after 15 years of H2 Blocker followed by PPI use resulting in a damaged stomach. It led to PA and then the demanding long-term remedial action to recover, B12 SI EOD, ferritin infusion, haem iron supplementation, co- factor supplementaion. Doctors use PPIs as insurance drugs against stomach ulcers, long term and with no monitoring. Rather like stattins are used as insurance drugs against stroke and heart attack.

[oily1601 in reply to Orchard33]

Did you just stop the medication,or did you taper off slowly?

[Orchard33 in reply to oily1601]

I tapered off over about a month and used Gaviscon when needed.

[MorningMist in reply to oily1601]

I had a gp tell me ‘there’s no such thing as active b12’. 😟 Quite possibly your doctor knows next to nothing about it.

[Jo5454]

Sorry yre feeling so rough, but yep can relate to that, it's not until we feel really well that we realise just how bad its been. Is omeprezole a ppi/ gastric med?

It's the Active b12 that counts & anything between 25-70, St Thomas NHS refer for MMA testing. What tests have you had so far...?

Many GPs know very little about b12 & iron I and many others on here find! Know I battled to get a diagnosis, ended up.paying. My new Gp recently admitted! Have you considered changing GP's for a start?

At that level & if you've b12 symptoms you surely need b12 treatment. I think we've spoken before, and will refresh what yve already tested tomorrow as can't tonight...

[Jo5454]

Saw you had tests 5mnths ago, have you had anymore recently such as full blood count to check mcv, mch, Haemoglobin, etc? Folate, vit d, ferritin, iron profile? Have you ever thought of doing a homocysteine test?

[oily1601 in reply to Jo5454]

Vit D,Haemoglobin,folate etc all good.Haven’t done mcv or mch…..will have to get them done soon….will also get homocysteine test.

[Jo5454 in reply to oily1601]

The mch/mcv could be top/overange if lacking in b12, providing your iron is good.Food for the Brain foundation do a homocysteine home pinprick test now which I think is around £50, considerably lower than others I've done.

Again, doesn't mean you haven't got a b12 issue even if it's in range, can just help your case if they show otherwise.

Hope you get somewhere with it all soon, as it could well be reason yre feeling so rough,so sooner you can start correcting it the better...take care

[oily1601 in reply to Jo5454]

I’ll get that done asap….thank you so much for your help….much appreciated

[Jo5454 in reply to oily1601]

You're welcome, I've just edited that, it's the homocysteine from the Food For Brain, the mch/mcv will be under a full blood count, tho you prob know that.Good luck...

[Sleepybunny]

Hi oily1601,

Welcome to the forum.

From personal experience , I can say that it is possible to have severe B12 deficiency symptoms with serum B12 results that are well within normal range.

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

What to do next if B12 deficiency is suspected or recently diagnosed

b12info.com/what-to-do-next/

Has your GP got a list of all your symptoms?

Symptoms of B12 deficiency

I used PAS list below and added extra symptoms at bottom of page.

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

Risk factors/Causes of B12 deficiency

b12info.com/causes/

b12info.com/whos-at-risk/

theb12society.com/causes-an...

NICE (National Institute of Health and Care Excellence) in UK published a new guideline on B12 deficiency this year (2024). I'm not happy with some bits.

PAS article about new NICE B12 deficiency guideline

pernicious-anaemia-society....

B12info.com article about new NICE B12 deficiency guideline

b12info.com/first-nice-guid...

I left some detailed replies on the thread below eg links to help those struggling to get adequate treatment in UK, suggestions of documents to read etc.

Some links I post may have details that could be upsetting to read.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

[Dancer57]

I have same problem. My total B12 is normal, in March it was 425 but on tests of Active b12 in Sept it was 28.6 and June this year 27. Also two MMA tests show above range and one was tested by NHS.

I have family history of PA and have Autoimmune Thyroid disease, but trying to get the NHS to acknowledge there might be an absorption issue is a nightmare because of total B12 in normal range.

It all depends if you have a clued up GP and who actually listens to you.

In my experience, GP no idea, Haematology, Gastroenterology also been useless. I have given up but I do wish you better luck in getting your health issue sorted. There are some good Doctors out there.

[oily1601 in reply to Dancer57]

It’s been a nightmare to be honest….hopefully get some answers soon.

Thank you

[Jo5454 in reply to oily1601]

Yep, like Dancer57, my serum level was 608 earlier this yr & I wouldn't fancy feeling much worse than that!

As I said above, it was initially in 200's when diagnosed with a functional deficiency, but after stopping injections for sublinguals over covid etc, it all worsenedvagain.

In Feb mynserum level was 608,yet I'd got numbness, weakness down one side, was starting to stammer,struggling to see through left eye, nausea, overange mch to name a few.

No idea what active b12 was,wish id tested privately, but it was 80 just before Cmas, whether it lowered I'll never know as started loading dose whilst waiting blood results & active b12 wasnt tested due to lab rules- theyvassumed I couldn't possibly have b12 defic with serum level that high.

My Dr finally recently admitted he doesn't know enough to stop me having monthly jabs back, so really don't rely on anyone trying to tell you what you feel is right!

[oily1601 in reply to Jo5454]

Hopefully I’ll get some answers soon.Earliest appointment I could get was 9 December…..absolutely shocking

[Jo5454 in reply to oily1601]

It certainly is! Same here, my Dr who's new to me advised not to approach other Drs & just speak to him, trouble is its a months waitvat least usually. Then it feels a race against time in the appt to get it all across with the knowledge it could be weeks before we can have round 2! Though, he is very fair with running over a bit!

What I did initially was wrote a letter- symptoms, results so far etc & hand in for your Dr prior yr appt. Cuts down explaining time, so more can be about action and at least its in your notes too as evidence!

Mind you, I've just read a referral letter he's written for another issue describing me as active, fit and well, which couldn't be further from truth as how I'm feeling,lol ! Oh well.

[Sleepybunny]

I think Jo5454 's idea of writing a letter is a good one.

It's proof you've raised the issue...always keep a copy of any letters. Having a paper trail can be useful if there is a need to make a formal complaint in future.

I used to include a request to file letter with my medical notes to make extra sure they did.

Link about writing letters to GP about B12 deficiency

b12info.com/writing-to-your...

I hope your GP listens. I had some very difficult experiences and I think there's a general lack of knowledge among GPs about PA and B12 deficiency.

If your symptoms suggest B12 deficiency but serum B12 is normal range, I'd expect GP to consider functional B12 deficiency or to refer you to a specialist who can investigate that possibility.

Seeing a specialist does not guarantee better understanding or better treatment...I saw many specialists and they all missed obvious B12 deficiency (more than 50 typical symptoms) partly due to fact that most of my serum B12 results were well within range. Only one, a neurologist thought it might be a possibility.

Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) can help to diagnose functional B12 deficiency.

If GP dismisses the idea of B12 deficiency due to normal range serum B12 might be useful to show them this article.

Search online for "Turner SACD functional B12 deficiency". This will show an article where a patient with normal range serum B12 developed spinal cord problems due to B12 deficiency from delayed treatment.

Other deficiencies

It's quite common for people here to also have folate, iron and Vitamin D deficiencies.

Have you got test results for these?

And for Full Blood Count?

Also commmon for people to have thyroid problems. Thyroid UK forum on HU is a good place to ask questions about thyroid.

If you're symptomatic for B12 deficiency but your diet has plenty of B12 rich foods, I'd expect GP to at least test you for PA (Pernicious Anaemia) and Coeliac disease, both autoimmune diseases that can lead to B12 deficiency.

If you suspect PA, worth joining and talking to PAS (Pernicious Anaemia Society).

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS have support groups in UK.

pernicious-anaemia-society....

Can be useful places to swap information.

I think non members can attend some meetings but check with PAS or group co-ordinator.

PAS website has lots of useful leaflets

pernicious-anaemia-society....

Might be useful to write out a typical weekly diet, all food and drink to show GP.

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Coeliac UK article about diagnosis of coeliac disease

coeliac.org.uk/information-...

More info in thread at bottom of my other reply.

Thread about Patient Safety, has links for those struggling to get adequate treatment in UK.

healthunlocked.com/pasoc/po...