New blood test results - confusing please help!

[be123]

Hello, I've been having monthly B12 injections for the last couple of years due to my pernicious anaemia and ME. I've recently moved to a new GP surgery, and my new GP has refused to let me have anything more than 3 monthly as per nice guidelines. They said I needed a blood test first, which came back as 1013, highest level is up to 1900 apparently. Does anyone know the minimum number at all please and if my level is classed as normal, or low normal etc? I've been fobbed off before by being told it was normal and it was only just in the normal level so I just wanted to get some advice. Thank you!

[Gambit62 Administrator]

the upper amount on the range is the point where the test stops really being able to give an accurate measurement. It varies depending on the kit and the precise method being used to measure serum B12.

When you have an injection your serum B12 levels will be off the top of the measurable scale because the injection is putting an enormous amount into your system and your blood. The level then falls over time. On average reducing by 50% every couple of days or so. However, a lot of people seem to react to high serum B12 in a way that keeps it in your blood longer - making the process that allows the B12 to get into your blood less efficient and hindering kidneys from removing it as quickly. These people tend to need much higher levels of B12 after loading shots - often off the top of the range. It also means that using B12 levels as a guide to treatment is a nonsense post loading shots. The BCSH and NICE guidelines don't recommend retesting serum B12 on a regular basis.

The BNF was recently changed to say that Maintenance in the absence of neurological symptoms is now every 2-3 months. Maintenance if you have neurological symptoms is every 2 months. May be worth suggesting to your GP that they recheck the BNF regards maintenance and testing.

[fbirder in reply to Gambit62]

The level then falls over time. On average reducing by 50% every couple of days or so

I'm sure that the elimination of B12 is a lot more complicated than that.

If all of a 1000 mcg injection went straight into the blood (volume 5 L) it would give a concentration of 200 mcg/L - or 200,000 ng/L. If it reduced by 50% every 2 days then it would be just 200 ng/L (about the bottom of most 'normal' ranges) after 20 days. After 40 days it would be 0.2 ng/L.

When the B12 enters the bloodstream some of it will go for storage, some will get eliminated in the kidneys. The amount eliminated by the kidneys will be much greater with higher levels. So the initial level will drop very rapidly. Then it will reach a stable condition where the levels drop slowly.

Nobody knows why some people need very high levels of B12 to keep the symptoms at bay. The study that the PAS are involved in strongly suggests that there is some biochemical difference between those who do and those who don't.

[Nackapan]

Nice guidelines are 2 -3 monthly. G.ps can give injections more often if they so wish on an individual's needs. My g.p initially said loading dose then 3 monthly and now has said the above. I don't understand the B12 levels as the normal range I was given was 200-900ug/l and if having injections monthly the leveks would be high. I was told if tested at all you would have to be off them for 3-4 months. Also once given on a regular basis testing irrelevant. Surely in your notes from old g.p would be reasons for your regular monthly I jections. I'm so sorry to hear this as it is so upsetting if you are staying well on the monthly regime. Is their more than one doctor at your surgery? Write your symptoms down . Alert them to what your health was like before monthly injections. There is plenty of help on here. Letters to write ect. Hope it gets sorted very soon.

[Nackapan in reply to Nackapan]

Sorry gambit62's reply wasn't showing when I wrote mine!! If it was showing I would not have replied !

[Foggyme Administrator in reply to Nackapan]

Nackapan...just to say...all posts are equally valuable and we admins would be quite sad if we thought that leaving a reply meant that others were put off leaving one too 😢.

So...please don't stop replying just because we do...it's great that you want to support others and I'm certain that all replies are most welcome to those who receive them.

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[Nackapan in reply to Foggyme]

Thanks for that reply foggyme I appreciate it.

[Foggyme Administrator in reply to Nackapan]

No problem Nackapan....replies...that’s what we all need. The more the merrier 🤣🤣🤣

[be123]

Thank you all for your comments, I'm going to keep a diary and note down all of the symptoms I get until they'll allow me to have the next one and see another GP. Funnily enough it was a practice nurse that got involved and caused the upset with the injections, so I'm going to challenge it asap and take all of your info with me along with as much info online as possible! Apparently my notes aren't showing the previous issues, so I'm going to contact my old GP and see if they still have record of it because it looks like my full notes haven't been transferred across! Thank you all x

[Nackapan]

Let us know how you get on. Hope it's resolved soon

[Sleepybunny]

Hi,

"my new GP has refused to let me have anything more than 3 monthly as per nice guidelines."

Might be worth looking at documents below. As others say, BNF guidance on treatment has changed recently to say jabs every 2 or 3 months for those with B12 deficiency without neuro symptoms. See PAS news item below.

pernicious-anaemia-society....

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

Do you have or did you have any neuro symptoms eg tingling, pins and needles, tremors, brainfog, memory problems, balance issues, tinnitus, restless legs, migraine plus others?

If yes to neuro symptoms then BNF, NICE CKS, BSH links say B12 maintenance jabs should be every 2 months.

How many loading doses did you have at start of treatment?

BNF says 6 loading jabs over 2 weeks for B12 deficiency without neuro symptoms.

If neuro symptoms present , BNF says a B12 loading jab every other day for as long as symptoms get better, could mean weeks even months of loading jabs.

If you weren't given recommended number of loading doses at start of treatment you may be able to negotiate another set of loading doses.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

"They said I needed a blood test first, which came back as 1013, highest level is up to 1900 apparently. "

BSH Cobalamin and Folate guidelines say that testing B12 levels after treatment has started is irrelevant. See first BSH link above.

There is a useful summary of B12 guidelines in third pinned post on this forum which mentions this issue of retesting B12 levels

Have you considered joining PAS (Pernicious Anaemia Society)?

In some cases they can intervene on behalf of their members and at very least can point members to useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Support groups can be useful source of info on helpful GPs etc.

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines but will not show change in BNF treatment guidance.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Misdiagnosis of B12 deficiency as ME/CFS

It seems to me that a large proportion of people on the forum have a diagnosis at some point of ME/CFS or Fibromyalgia.

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

martynhooper.com/2015/08/04...

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...

"Funnily enough it was a practice nurse that got involved and caused the upset with the injections"

Help for health professionals

1) PAS website has section for health professionals who can join PAS for free.

pernicious-anaemia-society....

2) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment " access to PAS members only. Not sure if it mentions recent change to BNF.

pernicious-anaemia-society....

3) Perhaps GP/nurse would be interested in this conference about B12 deficiency?

pernicious-anaemia-society....

If all else fails....

Some forum members choose to self treat.

I am not medically trained.

[be123 in reply to Sleepybunny]

This is so helpful thank you. I'm going to print it all and highlight the relevant bits and show the GP. Thanks so much

[Sleepybunny in reply to be123]

My personal view is that sometimes it is best to put queries about treatment into a brief, polite letter to GP because

1) In UK, letters to GP are supposed to be filed with medical notes so are therefore less likely to be ignored. No guarantee that letter will be read though.

2) Letters avoid face to face confrontation.

3) If GP gets letter before next appointment, it gives them time to do some B12 homework.

See letter writing link in my post above.

Words of caution...

Some GPs find it difficult to cope with assertive patients. Be prepared for GP/patient relationship to deteriorate.

I think it's worth contacting PAS. You would need to be a PAS member to access support.

pernicious-anaemia-society....

I think this blog post from Martyn Hooper's PA blog has some similarities to your situation.

martynhooper.com/2018/12/23...

Good luck

[GastritisB12]

You might be interested in this old study, it seems to show that more than half of people's B12 levels fall below 1000 after 2 months, and after 3 months most people's levels fall below 1000. If you need a high level of B12 to fix your symptoms 3 months may be too long?

bloodjournal.org/content/bl...

[be123 in reply to GastritisB12]

Amazing, thank you I'll take a look!