Baffled by my GP practice..... - Pernicious Anaemi...

Pernicious Anaemia Society

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Baffled by my GP practice.....

CatsinDevon profile image
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I'm new here......hello :o)

I was diagnosed as being low in B12 back in August of this year, just by routine blood tests. My reading was 166. One GP I see often, told me over the 'phone I was 'pernicious anaemia'. I had my loading doses of 3 x week for 2 weeks. I had an appointment with the nurse today for another '1off' B12 jab. However on getting there I was told by another GP that I wasn't 'pernicious anaemia' and my next injection would be in February '19. To say I'm confused and slightly let down is an understatement. Do people have any ideas how I can take this forward and what is the normal range for B12 in a 50yr old female! (I also suffer with a underachieve thyroid, which I take regular levothyroxine medication for and I also have 'Degenerative Disc Disease' and have already had my C5/C6 fused back in 2013 and the surgeon won't fuse any more until I start to show more spinal cord damage ie: can't walk, fall over, fine motor skills go, etc etc. Thanks, any information would be greatly appreciated.

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Gambit62 profile image
Gambit62Administrator

normal range for the test would have been given on the test - there are two separate measures that can be used by labs and they will have different ranges.

However, normal range doesn't mean any point in that range is correct for a given individual - that's not the way statistics work.

There are a number of absorption problems that will lead to a B12 deficiency. As far as I am aware - and assuming you are UK based the protocols are loading + maintenance doses for non-dietary unless the cause is treatable and has been treated (eg h pylori infection treated with antibiotics.

The most likely cause of a non-dietary deficiency is PA - and the test for PA as a specific cause is so flaky that the BCSH protocols (which your GP can access through the BNF) even refer to non-IFAB PA.

It would be useful to understand why the second doctor is stating that it isn't PA - if it is as the result of IFA test proving negative then you need to point out that the test produces false negatives 40-60% of the time (depends on exact test protocol) so a negative is a long way from being solid evidence that you don't have PA. If the reason is that you don't show any signs of macrocytosis then the response is that 25% of patients who are B12 deficient don't present with macrocytosis. Macrocytosis is a symptom of b12 deficiency but it isn't a defining characteristic.

If you have hashimotos then there's a 10-40% chance of going on to develop PA

Sources

BCSH guidelines

onlinelibrary.wiley.com/doi...

and on cross over of hashimotos and PA

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

Sleepybunny profile image
Sleepybunny

Hi,

"on getting there I was told by another GP that I wasn't 'pernicious anaemia' and my next injection would be in February '19"

I suggest it might be worth getting copies of your complete medical files, may be a charge for this. You could then see if a diagnosis of PA has been recorded.

If one GP does not think it is PA , what else do they think is causing B12 deficiency symptoms?

Some GPs do not realise that it is possible to have PA even if the test (Intrinsic factor Antibody) for it is negative. See UK b12 documents below.

More B12 info

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/health/dyspeps...

Exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Diet?

Do you eat a diet with plenty of B12 rich foods? A vegetarian or vegan diet can be a risk factor for developing B12 deficiency.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Above link has lots of useful b12 info.

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/

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...

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 UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

What to do next

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

If you have B12 deficiency with neuro symptoms, my understanding is that you should have B12 jabs every two months. This applies what ever the cause of the B12 deficiency.

More about UK B12 treatment regimes in BSH, BNF , NICE CKS links in documents list.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

More B12 info in pinned posts on this forum.

I am not medically trained.

mightydrunken profile image
mightydrunken

Pernicious anaemia is a specific condition where your immune system attacks intrinsic factor or the parietal cells. This leads to B12 deficiency that needs to be treated, usually with B12 injections. There are other conditions which can lead to B12 deficiency, most often malabsorption. This could be caused by Celiac disease, Crohn's disease or a number of other problems. Another common cause is the result of medications for example metformin and drugs that reduce stomach acid, like proton pump inhibitors.

So you can be B12 deficient and not have PA. There are some tests for PA but it often the case where it is diagnosed by ruling other things out in combination with the PA test results. Gambit's post give a good but technical answer to this.

The normal range depends on the testing methodology, the lab will show the expected range with the results. Though once you take B12 supplements like an injection your results will be very high and it won't give a clear picture of what you need.

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