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Pernicious Anaemia Society
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VITAMIN B12 DEFICIENCY

Hi I've recently had a blood test come back saying i was borderline b12 deficient so got retested and it was lower again but the doctor said my tests were fine. I phoned the nurse who was surprised and is looking into it as i didn't make sense to her either. I have so many symptons so not sure why the doctor said this.

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it could be that the GP just isn't aware of how important B12 is.

Also possible that they aren't aware of limitations of the serum B12 test (will miss 25% of people who are deficient if it is used as a single measure.

Also possible that they mistakenly believe that B12 deficiency is all about macrocytic anaemia but tht's just one of the many potential effects of a B12 deficiency and isn't present in 25% of patients initially presenting with B12 deficiency.

Unfortunately all of the above are common occurances.

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Thank you for the reply. I've been told the tests and treatments are expensive hence the reason they don't push it, which i think is disgusting.

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the nurses time is expensive. tests can be expensive. B12 itself isn't expensive

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How much expensive?

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Don't know the cost was told this by the nurse.

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a phial of B12 costs less than £1 if you buy from Germany.

getting B12 in the US seems to be more expensive but that's probably drug companies making a significant profit.

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Thank you

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Gambit62,

Which makes even less sense of their failure to support self-injection.

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so true.

However, I think the real sticking points on that one are

a) the mistaken idea that B12 injections need to be done intra-muscular (which is more risky than subq). If that notion was dispelled, and someone actually put the energy into developing a pen for B12 then life would be so much easier for everyone

b) the mistaken idea that B12 is a one-size fits all and injections are only needed once ever 2-3 months (which could possibly be seen as a dis-incentive to using a pen). I think someone in Canada has developed a pen but they market it for slimming, and charge an absolute bomb for it!

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Hi Wendyhug,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Sadly, quite a few on this forum find that b12 deficiency is not as well- understood by some doctors as it could be, so in my opinion it pays to do a bit of homework about it.

"the doctor said my tests were fine"

Probably the most important thing I learned from years of trying to find out what was wrong with me was to always get copies of blood test results. I learnt to do this after being told everything was normal and then finding abnormal and borderline results on copies.

Access to medical records (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

"I have so many symptons so not sure why the doctor said this."

In UK, recent emphasis has been on treating people who are symptomatic for B12 deficiency even if b12 is within normal range.

Lists of B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

B12 documents

If you're in UK, I'd suggest reading following UK documents/articles.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat people who are symptomatic for B12 deficiency even if B12 result is within normal range, in order to prevent neuro damage.

BSH Cobalamin and Folate Guidelines

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

I gave a copy of this to my GPs as they seemed unaware of this document.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that in UK people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial b12 treatment. IFA test can help diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

BNF British National Formulary Chapter 9 Section 1.2

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

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

Gives details of UK b12 treatment, treatment info can also be found in BSH Cobalamin and Folate Guidelines (link above). All UK GPs will have access to BNF.

Have you had an Intrinsic factor Antibody test?

There is a useful summary of mainly UK B12 documents in third pinned post on this forum.

What does GP think is causing your borderline B12?

Risk factors for B12 Deficiency and PA

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

PAS (Pernicious Anaemia Society)

If PA is a possibility, may be worth joining and talking to PAS. They can offer support an info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

PAS members can access details of PAS support groups in UK.

pernicious-anaemia-society....

UK B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this book to my GPs.

"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 book about B12 deficiency with lots of case studies.

Link about What to Do Next if b12 deficiency is suspected

b12deficiency.info/what-to-...

Links about Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

labtestsonline.org.uk/under...

Folate Deficiency

patient.info/doctor/folate-...

Unhappy with treatment?

Link about writing letters about B12 deficiency to GPs

b12deficiency.info/b12-writ...

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

Point 5 is about being symptomatic with an in range B12 result

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

I am not medically trained.

Good luck with getting answers.

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Hi there, what were your results? Do you have prior test results to put most recent into perspective? You can get your own tests done, normal B12 and active b12, quite easily from finger prick tests and of course you can supplement without your Gp's consent or knowledge. I take high dose sublingual in case of intrinsic factor issues. I believe 10% gets absorbed in the bowel even if you can't absorb it in your stomach.

Don't let this pass by. When I got a copy of my medical notes a few years ago I discovered I had been very low in range, across all the b vitamins and iron, for many years and no one ever mentioned it. Borderline is not good enough.

More recently I had my genome mapped and discovered that I have methylation issues (not uncommon) and need to take a specific form of b12. I'm sure all of this will be in the amazing post from sleepybunny .

Keep posting on here and you can help to work around your GP :-)

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Thanks everyone for all your fantastic posts.

I am back at the doctors tomorrow to have furthet tests done regarding my joint pain etc so I will find out all the results etc then. I am only 42 so not sure what's causing the pain and of it's b12 related.

I am based in Scotland so trying to figure out what they class as low.

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Hey, I have plenty of joint pain too (for instance knees when I stay sitting on a chair or in a train), I think it can come from B12!

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Hi again,

Are you aware of the petition about b12 deficiency that is currently being looked at by the Scottish parliament?

parliament.scot/GettingInvo...

There is a Kilmarnock Thyroid & B12d Support Group which posts about meetings on the Thyroid UK forum on HU.

Not sure if there are any other B12 support groups in Scotland.

Access to medical records (Scotland)

nhsinform.scot/care-support...

"I am back at the doctors tomorrow"

Might be worth trying to talk to PAS before your appt.

PAS tel no in my post above.

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Hiya,

Thanks again for all this information.

This is all new to me as i never knew anything about B12 deficiency until the nurse highlighted. She's been excellent and has pushed for more tests.

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Hi,

I forgot to sat that taking B12 supplements prior to taking diagnostic tests for B12 deficiency can make it difficult to get a diagnosis. See links below.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

I ticked all my symptoms on the PAS Checklist (link in post above) plus added any other symptoms and gave a copy to my GPs.

"I am based in Scotland so trying to figure out what they class as low"

Finding local B12 reference range

1) Internet search

2) Look at copies of B12 blood result, may have reference range next to result

3) Could ask GP surgery

4) Freedom of Information request to NHS website for your local area

5) Local MP may be able to help

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They say this when you’re within the ‘normal range’ even if it’s at the bottom end.

If you have symptoms you should be treated, simple as that.

I’m bottom end of within range in Vit D and gp refuses to treat although I have obvious low Vit D symptoms and from past experiences I know it’s low D so I just bought some high strength for £6 something which is what I need. I’ve lost faith in gp’s as they’re not treating properly.

He was giving me strong painkillers which cost more and don’t solve anything.

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Hi was at the doctors on Tuesday they tested me for rheumatoid arthritis but thankfully clear.

My 1st B12 test was 133 2nd 127

Folate 7.2 then 5.1.

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Hi Reading up on low level b12 I'm not sure I am at 133. They said this was border line and I am now receiving injections as I have many symptoms. Is this correct?

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