Blog post on Unnecessary Retesting of B12 levels

[Sleepybunny]

Hi All,

I missed this other new post when I started a thread yesterday. It's about doctors retesting B12 levels when guidelines suggest retesting is not needed.

b12deficiency.info/blog/201...

[helvella]

There is a similar parallel with iron deficiency. Time and again we (especially on Thyroid UK) see someone found to be iron deficient. They are typically prescribed ferrous sulphate three tablets a day.

After a time, they are re-tested and declared iron replete. Stop supplementing.

After a bit more time, they are iron-deficient again. But their notes say they are replete, so no, they don't need another test...

If nothing has been done to increase the person's real uptake of iron, or reduce their losses, what else would anyone expect?

Perhaps, having reach repletion, they could drop to one tablet a day? Or a change in diet? Or successful treatment of other issues can help.

The slight difference is that re-testing is required and it is the action then taken that is based on failure to understand at the most basic level.

(This ignores the fact that so many are unable to tolerate sufficient ferrous sulphate. Hence, even when treated, they tend not to reach repletion.)

[Elsa1509 in reply to helvella]

I agree helvella! I’ve battled severe iron deficient anaemia for years and IBS from all the iron supplements I’ve had to try and tolerate (also have Hashimotos). If it wasn’t for me pushing for regular tests I would never have any follow up from medics.

My husband was diagnosed with Diabetes Type 2 in 2017 and the medical care, follow up and input he receives is second to none ! The impact of anaemia on health and stroke risk is documented and yet we are still the ‘forgotten’ patients. My sister and daughter have also been neglected with their anaemic ‘battles’ and it has really affected the quality of our lives. It makes me angry just thinking about it !

[Midnight_Voice]

SOP at the practice we have just joined is to test B12 levels, and if they are high enough, not to give further injections.

Sounds reasonable, if you don’t know the facts and the guidelines.

But the doctor we saw (‘we’ because my wife has the B12 deficiency, and I am fighting her corner) was at least open to listening, and is going to look up the NICE guidelines referenced in that article, and which I mentioned at the consultation.

But I see that I am going to have the emphasise the ‘retesting is not helpful’ bit, as it’s quite buried in there, and not as prominent as it perhaps should be.

I also notice from the NICE site that this guidance apparently carries less weight than other topics:-

pathways.nice.org.uk/pathwa...

‘These practical resources are for primary care professionals (they are not formal NICE guidance).’

which we should perhaps note.

The link there to the medtech briefing is currently broken, by the way, but nice.org.uk/advice/mib40

works. I’ve let NICE know so they can fix it.

I was looking for a little more insight as to why the B12 levels are misleading, apparently for ever, once you’ve had loading doses; is it an active/inactive levels of B12 that can’t be differentiated thing, or what?

Apropos of the referenced article, by the way, I wouldn’t dream of giving this as a reference to the doctor; only ever definitive and official medical information doctors can relate to, which is quite difficult enough to get across anyway

[Sleepybunny in reply to Midnight_Voice]

Hi,

Have you seen these documents?

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

There is a section in BSH guidelines that mentions that retesting B12 levels is irrelevant after treatment has started. Your GP may be interested in that.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

These English articles from Dutch B12 website may also be of interest.

Testing B12 during treatment

tps://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/testing-b12-during-treatment/

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

There is a useful summary of mainly UK B12 documents in third pinned post on this forum which mentions issue of retesting B12 levels after treatment has started.

I may add more to this reply so check back later.