Still waiting for results!

[Fox123]

I had a blood test 4 weeks ago. My GP wanted a full blood count and also Intrinsic Factor test ( which I had to request) as my B12 levels have been steadily dropping over the last 12 months, despite a diet rich in B12. The FBC results were back within a week but I'm still waiting for the IF test results. I've rung the practice every week and the receptionist just keeps saying the results are "pending". I asked if they could chase it up but she just kept almost wrangling out of my questions and wanting to hang up. I do have a lot of the symptoms of B12 deficiency- fatigue, palpitations, spots ( at 62 ??!!) pale complexion and breathlessness but I feel like I'm hitting a brick wall. Any advice please?

[fbirder]

I understand that they do these antibody tests in batches as it requires a specific setup on the machine.

[Sleepybunny]

If the delay continues then you could ask for a telephone appointment with GP who ordered test and ask them to chase it up.

Does your GP surgery have online access to patients records/results?

Have a look on your GP surgery website for details of how to access them online and you can check if IFA results are on the system. Look for "Online access" "Patients Access" or Emis Access"

I'm surprised that you haven't had them yet.

Perhaps PAS would know how long it takes on average to get results?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

I am not medically trained.

[Gambit62 Administrator]

IFA is a notoriously insensitive test and gives false positives 40-60% of the time (depends on the exact test method) so a negative wouldn't rule out PA anyway.

Did the FBC show up any signs of macrocytic anaemia - larger rounder red blood cells that characterise one set of symptoms of B12 deficiency? However, as 20% of patients with B12 deficiency present without any anaemia its absence doesn't rule out B12 deficiency.

If your levels are dropping significantly (>20%) that indicates an absorption problem - your body will tend to regulate serum B12 levels using stores in the liver but the mechanism that releases these stores relies on the same mechanism (ileum) to reabsorb the B12 into your blood - so if you have an absorption problem your levels will just fall over time.

There are other absorption problems - eg h pylori infection and its easier to rule these out than it is to confirm PA.

Your age also makes an absorption problem more likely just because acidity levels tend to drop as you get older - not necessarily related to PA.

The treatment for h pylori would be antibiotics but most other absorption problems can't be treated meaning that the treatment is injections for life.

The limitations of the serum B12 test, including the fact that it is a huge normal range and it is possible for an individual to be deficient well into the normal range is discussed in the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders - last publshed versions can be accessed here but your GP should also be able to access them via the BNF

onlinelibrary.wiley.com/doi...

note: there has been one amendment to treatment guidelines not reflected in the publication - maintenance without neurological symptomms is now 2-3 months rather than 3 months

[FlipperTD]

Not all laboratories performing Serum B12 assay will necessarily perform Intrinsic Factor Antibody tests. Instead, they may 'subcontract' and send the specimens to another laboratory, and in all probability send them in batches. I'm not suggesting that's what's happening here, but it's a possible explanation. Depending on the method used and the number of tests performed then [as fbirder points out] then batching will occur. I hope you don't have to wait much longer!

[Fox123]

Many thanks for all your responses. Seems like I have much to learn! Thought my thyroid was complicated enough but looks like I’m off on another journey of discovery with my B12 now.

[Sleepybunny in reply to Fox123]

Hi,

here's some more B12 info....

Symptoms of B12 Deficiency

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...

As well as PA , have you been checked for Coeliac?

NICE guidelines Coeliac Disease (UK document)

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

Coeliac Blood Tests

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

H Pylori infection?

patient.info/digestive-heal...

Exposure to Nitrous Oxide

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

There are many potential other causes of B12 deficiency eg fish tapeworm infection.

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 does not show updated BNF info.

"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 documents

BSH Cobalamin and Folate Guidelines

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

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....

NICE CKS

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

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

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...

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/

Blood results

Do you get copies of all your blood test results?

I learnt to after being told everything was normal/no action and then finding abnormal and borderline results on the copies.

Most UK GP surgeries have online access to a summary of results. See GP surgery website for details.

Access to Medical Records (England)

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

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

Link about "What to do next" if B12 deficiency suspected

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...

Vital to get adequate treatment or there is a risk of further deterioration including spinal damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Warnings....

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...