Do the NHS test for active b12 aswell a total b12?

[Cesca-K]

I wonder because my sister was diagnosed with pernicious anemia years ago but now they say her b12 levels are really high normal.

[Nackapan]

If she's on regular b12 Injections as she would be .B12 levels will be high.

Wonder why tested ?

Active B12 not normally done on the NHS .

I think this years new NICE guidelines mentions it though .

[FlipperTD]

The B12 assays in use in the NHS are typically Total B12, so that's 'Active' and the rest. Only 'Active' is usable. It typically represents about 25% of the total.

Some analysers in use within the NHS are capable of measuring both, but that increases the cost of running the service and although it may have some advantages, it probably isn't widely adopted, possibly due to the extra cost.

There isn't [or there wasn't in my day!] any direction from 'on high' about which tests should be run, and why. Decisions are made locally.

[Palum]

Has she been on any b12 supplements or injections because she shouldn’t be tested ever again?

[Cornwaller]

If she has a PA diagnosis then she will need b12 injections for life and these, do what they say on the tin, and raise b12 levels in the blood. This isn't a cure and doesn't mean the PA has gone away. Indeed it is recommended that b12 serum levels are not tested once on injections as the result is pretty meaningless and worse could be misunderstood.

[Cherylclaire Forum Support]

If your sister has been diagnosed with pernicious anaemia (PA) years ago and is in the UK, I am presuming that she has been treated according to guidelines (?)

This means, after loading injections, usually a maintenance injection every 2 or 3 months. [Some GPs will give more frequent injections, based on observation of patient's need. Most won't.]

Medical guidelines advise against retesting after injections have started. Serum B12 will be high if guidelines on treatment have been followed. It is also likely that active B12, if tested, would also give a high result. I have had an active B12 test on the NHS but it was "normal" as I had already been started on frequent injections - so not of any help.

The only valid reason I can think of for retesting a patient after B12 injections have been started is where there is a suspicion of functional B12 deficiency -as the patient continues to decline despite injections. Both B12 and MMA (methylmalonic acid) in this case can fail to form the connection necessary to transport the B12 to cells and tissues, leaving the patient unable to improve. This was my diagnosis.

The only other concern would be finding a very high B12 level in a patient that has NOT had any injections or supplements of B12. This could be an indication that there is a renal problem, for example.

If your sister had a positive IFab (Intrinsic Factor antibody) test result on record as the means of her diagnosis, then she has proof that she has PA. There is no cure for this condition.

[Mixteca in reply to Cherylclaire]

What's the course of action if a functional deficiency is suspected or diagnosed  Cherylclaire ? And how would this be diagnosed?

[Cherylclaire Forum Support in reply to Mixteca]

"Functional B12 deficiency" is a term describing a malfunction occurring somewhere in the complex process of B12 being transported to where it is needed: cells and tissues.

If, for example, a patient presented with B12 deficiency symptoms - although it can be difficult to differentiate between that and other vitamin deficiencies/autoimmune conditions/other health conditions:

Serum B12 deficiency on testing was found to be low. This B12 deficiency would then usually be treated with 6 loading B12 injections within a short period (mine was 4 weeks) and then the usual maintenance injections - one every 3 months is the routine that most adhere to.

If the loading dose does nothing to change the situation and the patient's symptoms continue or worsen, then the point of the maintenance dose has been lost. Why maintain deterioration ?

At this point, a good GP might be concerned that s/he had "missed something" - and start referrals to secondary care: maybe gastroenterology, neurology or haematology depending on symptoms. A better GP might firstly try to get expert advice on B12 treatment directly from secondary care. The best of GPs would get an MMA test and a B12 re-test - because s/he had some understanding of functional B12 deficiency.

MMA (methylmalonic acid) forms a link with B12 to enable it to be transported to cells and tissues. Usually then, someone with B12 deficiency would have their B12 replenished by the loading injections, the introduced B12 would link up with the waiting MMA and move on to do some good at cell/tissue level. The patient would feel some relief of symptoms. No-one would have been likely to have had their MMA tested prior to the injections, so no-one would have measured any tell-tale build-up in serum at this point.

If there is a functional problem with this connection, then the MMA would still be raised despite introducing B12. There would be no cell/tissue repair and no symptom relief. So it would make sense, if this condition was suspected, for serum B12 and MMA to be tested after injections were started. I cannot think of another valid reason for retesting B12 once injections have been started.

There are other things to rule out as a possible cause for raised MMA - renal problems should be ruled out immediately by a blood test, SIBO (small intestine bacterial overgrowth) can be ruled out later by a fasting series of breath tests.

My GP was acting on advice when restarting my injections. She wanted to give every other day injections until there was no more possibility of improvement. This is the correct frequency for those with B12 deficiency with neurological symptoms. She asked for 3 a week. Nurses gave (reluctantly) 2 a week ; "too busy" to do 3.

Luckily, this was sufficient to do the job: I started visibly improving - everyone noticed. My friends and family, my employer, my workmates and students - and crucially, my delighted GP. Even some of the nurses realised this frequency was finally working for me.

I even felt the injection for the first time 3 months later - no longer had to ask the nurse "Have you done it yet ? " before I could put my jacket back on. Yippeee !

[It's the little things sometimes, isn't it ?]

These visible improvements meant my GP continued the regime for six months in total. Then I had an unexpected "blip" and got worse again, so she had to send me to secondary care. From this point forward, my maintenance regime started : one injection a month as promised. I struggled a lot on this frequency. A locum haematologist told my GP not to give me more than one injection every two months ..... !!!!

At this point, I started self- injecting, fearing I was going to lose my job. I told my GP (well, not till the day after I did the first one). Since I was not as busy as the nurses, I gave myself every other day injections. I continued this for over two years, and am now able to control my symptoms most of the time with 2 injections a week. Less will inevitably make me deteriorate again.

Despite the frequent injections, my MMA remained raised for three years, and on the 6th test, dropped into mid-range. This final test was taken by Adult Inherited Metabolic Diseases consultants, who were looking at my DNA for a genetic cause to explain my problem. They were very supportive, and apologised for failing to find a cause. They even suggested that I join the Pernicious Anaemia Society for ongoing support !

I was very lucky in having a good doctor who never gave up trying to get an answer for me and who knew enough to give me a functional B12 deficiency diagnosis and routine monitoring of ferritin, folate, vitamin D, renal blood tests, thyroid.... but never B12 after introducing frequent injections: she described this as "pointless".

Exactly !

For me, it is not possible to reduce this injection frequency without my symptoms becoming more frequent or severe. This is management not a cure.

I really hope this helps.

[Cesca-K in reply to Cherylclaire]

Thank you that's is what I wanted to know! That pernicious anemia could not be cured she keeps on insisting that it has been.

[Technoid in reply to Cesca-K]

"That pernicious anemia could not be cured she keeps on insisting that it has been. "

No problem with insisting on this if evidence can be provided but I havent seen or heard of it, so if they could provide some it would be interesting. There are always medical advances so the possibility can't be excluded but I would imagine that the pernicious anemia society would be announcing it to members if this was proven to be the case.

[Cherylclaire Forum Support in reply to Cesca-K]

Ask her for medical evidence - there won't be any.

[Recent NICE guidelines, many years in the making, would probably have mentioned it !]

[Sleepybunny]

Hi,

I've assumed your sister is in UK.

Patterns of treatment for B12 deficiency can vary between countries.

"now they say her b12 levels are really high normal"

I'm not sure why your sister 's b12 was tested again after treatment started.

Testing B12 during treatment

pernicious-anaemia-society....

stichtingb12tekort.nl/engli...

NICE (National Institute of Health and Care Excellence) in UK published a new B12 deficiency guideline on March 6th 2024.

nice.org.uk/guidance/ng239

I have reservations about this new document but it has some good bits.

Have you and your sister looked for the local B12 deficiency guidelines used by the ICB (Integrated Care Board) in her area of England (Health Board in Wales/Scotland)?

You or your sister might find it helpful to join and talk to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS website has lots of useful leaflets.

pernicious-anaemia-society....

I left a detailed replies on this thread below with links to other info.

"Help Needed! Have I got Pernicious Anaemia?"

healthunlocked.com/pasoc/po...

This forum has several pinned posts that may be useful to look at.

I'm not medically trained.