Active B12 levels

[MrsHappy]

Hi everyone. I hope someone can advise me as my dr just brushes everything under the mat. I have PA and get injections every 3 months. I feel fine most of the time on that routine. However, when I was feeling a bit worn out I got a private active B12 test done and it came back high. I mentioned this to my Dr who basically said it was a load of rubbish and total B12 is all we need to go by and I was wasting my money. I'm just worried that my level is too high and is it dangerous? Your views would be appreciated. Thank you.

[charks]

Yet again I am astounded by how ignorant GPs can be. And how arrogant.

Feeling worn out is usually a sign of low B12 levels. So it is strange that the test shows high levels. However don't worry about having high levels. My personal belief is the higher the better.

[Gambit62 Administrator]

There isn't anything to worry about in the high level. Whilst raised B12 can be an indicator of other problems this really applies to patients who haven't had injections. There isn't any toxicity from high serum B12 levels - if there were then injections wouldn't be an option for treating patients with B12 absorption problems because levels after an injection are off the scale and then fall over time.

Unfortunately both serum and active b12 are difficult to interpret if you are on injections.The fact that it was high doesn't really mean an awful lot and certainly isn't something to worry about. The studies that seem to be the source of the 2 month regime with Hydroxocobalamin which has since become a 3 month regime showed some people retaining very high levels of B12 for years after an injection. Unfortunately the studies don't mention how that related to symptoms, just recording what levels were.

On average patients with PA reported needing to maintain levels above the normal range to feel okay so you are probably just about the average of that group. Personally mine need to be off the measurable range, let alone the normal range.

Active B12 is more accurate than serum B12 in as much as it shows less variation on the same sample than serum b12. In general active B12 is about 1/5 (20%) of serum B12, so in that sense there isn't much point in doing both tests.

[Sleepybunny]

Hi,

I hope you find support and some helpful answers here.

If you have neuro symptoms now or had them prior to starting treatment, my understanding of UK guidelines is that you should be getting B12 injections at least every 2 months.

It's helpful to know which country you are in as patterns of treatment and the type of B12 used in treatment can vary between countries.

Have you got recent results for folate, ferritin (or other iron tests) and Vitamin D?

Forum members report deficiencies in these quite often.

I tend to post a lot of info so you may want to take a week or so to sift through it.

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

How many loading injections did you get at the start of your treatment?

BNF link below outlines two patterns of treatment for B12 deficiency recommended in UK

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin (UK document)

bnf.nice.org.uk/drug/hydrox...

I am pretty sure that my B12 levels are well over the top of the normal range but I need B12 injections far more often than NHS allows or my B12 deficiency symptoms come back.

Some UK forum members feel they have no other option but to source extra B12 for themselves when NHS treatment is inadequate for their needs.

I feel that effective treatment for B12 deficiency is one that keeps a patient symptoms free and in patients with some permanent damage, stops them from getting worse.

With a PA diagnosis, you might find it helpful to join PAS.

Membership of PAS is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has useful leaflets that some PAS members pass onto their GPs.

There is also a PAS page for health professionals that you may want to tell your GP about.

pernicious-anaemia-society....

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try

1) a search of forum posts using terms "local guidelines"

2) an internet search using "name of CCG/Health Board B12 deficiency guidelines" or "name of CCG/Health Board B12 deficiency treatment algorithm"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I encourage people to track down the local guidelines for their area, see blog post below.

b12deficiency.info/gloucest...

If you're not in UK, I suggest trying to track down any national or regional guidelines for your country.

Two useful books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment guidance (UK) has changed since this book was written. See BNF hydroxocobalamin link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency and PA

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

"my dr just brushes everything under the mat"

Some forum members find that some health professionals have misconceptions about B12 deficiency.

Hopefully your GP doesn't.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF (UK) guidance has changed since this blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[FlipperTD]

Scientist, not medic.

Active B12 is a relatively easy assay to set up because the equipment needed is fairly widespread in hospital labs. However, I would tend to agree with your GP. I might be more polite but the underlying message would be the same. If it was accepted that Active B12 added so much more value then why wouldn't the NHS set it up and replace the Total B12 assays in use? [answers on a postcard]. Save your money, and try not to worry. You're in good hands even if the delivery of the message seems a bit rude!

Be healthy, take care, and good luck.

[helvella in reply to FlipperTD]

The Doctors Laboratory (TDL), which appears to do much of the testing for private medical facilities in the London area (as well as some for NHS), did change to Active B12 some considerable time ago.

This at least makes it look as if NHS patients are not getting as good treatment as private. (And some private medicine does seem to be about appearance rather than reality.)

[FlipperTD in reply to helvella]

Your point is well-made, but I would caution about the use of the words 'as good treatment as private'. When I was in practice, if I had believed that the newly available 'Active B12' added much to the service, then I would have done my best to offer it locally, for the benefit of our patients, but also as an 'income generation' test for others outside our area. I did have other slightly esoteric tests in use; the famous/infamous Intrinsic Factor Antibody test [IFAb] and also Serum Erythropoietin. Both of them had considerable in-house use, but also generated significant income from other providers [mainly NHS labs] because they didn't have their own facilities. Or, more accurately, they might have had their own facilities, but didn't have the workload to enable them to turn round the samples promptly enough, because of the need for setting up calibrators and controls for a batch. When you can get the numbers of tests up, the calibration and control side of it is far less of an issue. So there's little doubt that the Active B12 does tell you something that total B12 doesn't, but I remain to be convinced that it's 'A better mousetrap' or the World would be beating a path to their door.

Put simply, I would not pay extra for one. I have used private medicine a few times, and believe it's been well worth it, but that's another story.

[QUE6T-33 in reply to helvella]

Hi Helvella, would you know how long before an Active B12 test is it suggested patients should you stop taking B12 supplements please? Medichecks advise 2 weeks, but read a post on Forum that said 3 months? Hope your keeping well.

[helvella in reply to QUE6T-33]

I'd defer to FlipperTD - it is an area I am far from confident about.

[QUE6T-33 in reply to helvella]

Ok, thanks Helvella

[Chance15]

I there I have ad b12 jabs then doctor wud see it was high and panic and stop them.I got doctor to fone me I explained my problems cracks in corner of mouth,itching,cracked soles on feet,tingling body tremor realy dry skin and wrinkled etc.Doctor put me back on 4 weekly b12 jabs.then stop after blood b12 to high.This went on for years on then of.I told doctor he was making me I’ll he seemed to listen to me he as now put me back on b12 every 28 days fingers crossed.

[Hidden in reply to Chance15]

I can understand your view that the doctor was making you ill from stopping and starting b12 injections. This very thing happened to me and took months to regain my health and confidence to be able to live a relatively normal life. The last occasion was just too much, and I just cannot face going through it all again so I now self inject.