Blood tests

[Sue4u]

Hy just a few questions , I’d like to know if pernicious anemia is hereditary? I myself think I have it but I get a full blood count done for other health reasons and nothing comes back they always say my iron levels are good , however I have all the symptoms my mum , brother and sister had they all had it , and I was wondering if it can be missed in tests , thank you for listening Sue

[clivealive Forum Support]

Yes, P.A. can "run in families" so you need to ask your doctor to test your Intrinsic Factor for antibodies (IFAB)

Make a list of all your neurological symptoms and give this to your doctor. He/she may first wish to test your serum B12 and Folate levels as these are not automatically included in a FBC test.

Treatment for your neurological symptoms should be started as soon as possible to prevent further damage.

Click on the link below, rthen on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

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

I am not a medically trained person but have had P.A. for more than 45 years.

[Sue4u in reply to clivealive]

Thank you for this information I will speak to my doctor about it , much appreciated

[Jennylind]

I wonder from the wording of your question whether you have been misled by the name 'pernicious anaemia' to thinking that low iron is the indicator of it? Despite the name, it is not the same as iron-deficiency anaemia. Pernicious anaemia results in low B12, but as you will learn when you research some more, levels of B12 serum in the blood are interpeted differently in different areas and by different GPs, so if you feel you are symptomatic, a 'within normal range' B12 result does not necessarily mean you don't have a problem.

There is always lots of good advice on this forum. Good luck!

[Sue4u in reply to Jennylind]

Thank you so much this is very helpful and I appreciate any advice , il keep at it until I rule different things out x

[Sleepybunny]

Hi,

Link about risk factors for PA and B12 deficiency. First link mentions that PA or other auto-immune diseases in family can be a risk factor for developing PA.

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

If you suspect PA, it may be worth joining PAS. They can offer support and information and in some cases can intervene on behalf of PAS members.

There may be stories on Martyn Hooper's blog about PA that are relevant to you.

martynhooper.com/2017/07/21...

martynhooper.com/2009/08/31...

martynhooper.com/2017/04/18...

There is also an interesting blog on B12 deficiency info website.

b12deficiency.info/

"however I have all the symptoms"

Lists of B12 deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page. I gave my GPs a copy of the PAS symptoms checklist with all my symptoms ticked plus I added any not on list.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

I'd also suggest you read the following documents (UK info).

1) BSH Cobalamin and Folate Guidelines

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

Cobalamin is the scientific name for B12. These guidelines were published in 2014. Some UK GPs may be unaware of them.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test and start initial b12 treatment even if B12 is within range. IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range (called Antibody Negative PA).

Flowchart outlines when PA or Antibody Negative PA can be diagnosed in UK.

Have you had an Intrinsic Factor Antibody test?

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises the need to treat people who are symptomatic for B12 deficiency even if B12 results are within normal range in order to prevent neurological damage.

3) BNF British National Formulary Chapter 9 Section 1.2

Gives details of UK B12 treatment.

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

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

People with b12 deficiency with neuro symptoms are supposed to get more intensive treatment eg a loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

A lot of people get put on standard level of treatment, a jab every other day for 2 weeks then a jab every 3 months which may not be enough if a person has neuro symptoms.

Details of UK B12 treatment are also in BSH Cobalamin and Folate Guidelines

"I get a full blood count done for other health reasons and nothing comes back they always say my iron levels are good , "

I always get copies of all my blood test results.

I learnt to do this after being told everything was normal over the phone or face to face and then finding abnormal and borderline results on copies.

Access to medical results (England info)

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

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

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

Links about blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

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.

"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.

Lots more B12 info in pinned posts on this forum. I found fbirder 's summary of b12 documents in third pinned post helpful.

Unhappy with treatment?

Link about writing letters to Gps about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of neuro symptoms.

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

CAB

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

"I was wondering if it can be missed in tests"

Sadly yes in my opinion...the PAS did a survey which showed that many people waited years for a diagnosis.

pernicious-anaemia-society....

I am not medically trained , just someone who has struggled to get a diagnosis.

[Sue4u in reply to Sleepybunny]

Thank you for all this information it’s very much appreciated , I will be looking into everything

[Gambit62 Administrator]

PA is one specific cause of problems absorbing B12. It can cause a specific type of anaemia, macrocytosis, in which your red blood cells are larger and rounder than normal. This anaemia isn't specifically related to iron levels. Iron based anaemia tends to result in microcytosis in which red blood cells are smaller than normal.

There is a huge overlap in the symptoms of iron deficiency and B12 deficiency.

Whilst macrocytosis is a very common symptom of B12 deficiency it isn't present in 25% of people who are B12 deficient when they first present.

Have you had B12 levels checked?

[Sue4u in reply to Gambit62]

Thank you for this no they never seem to do any specific tests on me , but I will be asking , thank you