I think I have PA but my test results... - Pernicious Anaemi...

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I think I have PA but my test results say otherwise? (& rapid increase in symptoms?)

greatcrestedgrebe profile image

Hello! I have had anaemia for about a year and my GP has been trying to work out what is causing it. I initially had low-ish b12 so had the b12 injections and my anaemia improved somewhat; since then I have been on the b12 pills instead (as we wondered if i had a dietary deficiency). The anaemia has got progressively worse since the last injection in Feb, but my b12 test results have been normal = I have intrinsic factor (ie don’t have PA), b12 at 526 in June and 845 as of yesterday.

I haven't really been symptomatic for several months. However, this week I have suddenly felt terrible: my heart rate is much higher when I try and go for a run, extreme fatigue, and breathlessness.

The blood test yesterday found a normal level of b12, suggesting that if the test is reliable, this isn't the cause of my worsening anaemia. I have been reading that the test is not that reliable though? In the course of a year, the only thing that has improved my symptoms is the b12 injection, and whilst I know that's post hoc reasoning, I do also have a family history of PA. Iron deficiency anaemia has been ruled out. Should I be insisting on the injection?

Also, should i be concerned about the sudden increase in symptoms? My GP said to call if I felt any worse or have chest pains and I have declined a physical exam for now. I just don't understand how I can suddenly feel so much worse? I ran 8 miles a week ago and now I am struggling to jog at all (indeed to walk!) Thank you for any advice :)

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7 Replies
Nackapan profile image
Nackapan

So you have tested positive for intrinsic factor so have PA. So need to be on B12 injections. Have I missed something

greatcrestedgrebe profile image
greatcrestedgrebe in reply toNackapan

I haven’t explained it very well! I meant I have the intrinsic factor, and therefore don’t have PA according to the test. PA= absence of intrinsic factor. Thanks for replying in any case.

Sleepybunny profile image
Sleepybunny

Hi,

"but my b12 test results have been normal = positive intrinsic factor"

Do you mean that you had a positive result in Intrinsic Factor Antibody test?

If your IFA result was positive then it is very likely that you have PA especially as you have a family history of PA. It is possible to have false positive result in the IFA test I think if blood is taken close to a B12 jab or supplement.

"I initially had low-ish b12 so had the b12 injections and my anaemia improved somewhat; since then I have been on the b12 pills instead (as we wondered if i had a dietary deficiency)."

If you had a positive result in IFA test, I don't understand why you are on B12 pills instead of having B12 jabs. PA requires lifelong treatment with B12 and injections are recommended in UK.

Recommended UK treatment for B12 deficiency without neuro symptoms is....

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

Recommended UK treatment for B12 deficiency WITH neuro symptoms is....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

This pattern of treatment applies whatever the cause of b12 deficiency even diet, if neuro symptoms present.

"we wondered if i had a dietary deficiency)"

Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12? Being vegan or vegetarian can be a risk factor for developing B12 deficiency.

If yes, then dietary deficiency is unlikely and it becomes more likely that there is an absorption problem in the gut eg PA, Coeliac disease, H Pylori or other gut condition.

In UK, proven dietary deficiency is sometimes treated with low dose oral B12 (cyanocobalamin ) tablets although jabs are recommended if neuro symptoms present/B12 deficiency severe.

The small amounts of B12 in low dose cyanocobalamin tablets are unlikely to be enough to treat B12 deficiency due to an absorption problem.

"initially had low-ish b12 so had the b12 injections"

How many injections did you have at start of treatment?

Some more links about B12 deficiency that may be of interest...

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA, Coeliac disease, H pylori infection?

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/digestive-heal...

Exposure to Nitrous Oxide

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

Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish?

Are you on any medication that can affect B12 levels ( or folate levels)?

Do you get copies of all your blood test results?

I learnt to do this after being told everything was normal/no action and then I found abnormal and borderline results on the copies. It affected my trust in doctors.

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're in UK, I'd suggest reading all of these documents below. They outline how B12 deficiency and PA should be diagnosed and treated in UK.

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....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

You mention in your title that you think you have PA and there is a family history of PA.

I think your best bet is to join and talk to PAS.

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

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

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/

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...

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

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

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/

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".

There is a recently published book ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD " by a retired doctor associated with B12d.org but I haven't read it yet.

Do you have any neurological symptoms eg tingling, pins and needles, numbness, tinnitus, balance problems, memory problems, word finding difficulties, brain fog, restless legs syndrome, vertigo, migraine plus others....?

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

Referrals

1) Neurologist

Have you been referred to a neurologist if neuro symptoms present?

2) Haematologist

NICE CKS link (up page) suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Did your GP do this if neuro symptoms present?

3) Gastro enterologist

Do you have gut symptoms? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc

I am not medically trained. More B12 info in pinned posts on this forum.

greatcrestedgrebe profile image
greatcrestedgrebe in reply toSleepybunny

Thanks so much for your detailed reply. I'm going to have a read of the links tomorrow. The good news is my GP is quite reasonable so I think she will be okay with me having the injections, I think she has just been worried that there has been no obvious cause of anaemia. Being armed with the facts about PA will be extremely helpful when I talk with her on Monday!

First to clarify - I tested as normal on intrinsic factor; I have it which is good/healthy, and not indicative of PA. According to the test, anyway. Sorry for the confusion, I have edited my post.

I am semi vegan/vegetarian, when I looked up b12 I realised I may well be dietary deficient. So that's why we trialled the b12 pills. I started these in Feb and my b12 has gone up a bit but my anaemia has got progressively worse. Hence wondering if the b12 test is just wrong.

Re: differential diagnosis. When diagnosed with anaemia last year, I was immediately screened for coeliac - fortunately that was negative. I did have the six loading doses. Fairly sure I don't have tapeworm etc. I have recently got the patient access app which has been invaluable for looking up my exact blood test results. We did wonder whether my taking omeprozole could have contributed, so I stopped that six weeks ago, and I also stopped ibuprofen which I was taking regularly, just in case of a stomach/colon bleed causing anaemia. But anaemia has got worse since then, so i don't think that is causal. I declined the camera assessment for now (gatroscopy? down your throat/up the colon!)

I am finding it difficult to think, particularly at work, but I would say that seems more fatigue than neuro, as first thing in the morning I am okay (before deprived of oxygen I guess). I have unrelated, preceding neuropathic pain and numbness- but this hasn't got worse. My GP has consulted with a haematologist as I have also had decreased white cell count, so perhaps when I discuss PA with her, I can ask her to speak to them again. I don't have gut symptoms. i do have quite a strong family history of PA with my sibling, parent, grandparent and some cousins experiencing it.

Do you have any ideas about why i might suddenly go from quite good functioning, to barely coping? I have found this quite alarming, it is difficult to walk or even sit up for long periods, whereas a week or so ago, I was running long distances.

thank you again and I will definitely be reading all of your links, and I expect I will feel more informed when discussing with my GP.

Sleepybunny profile image
Sleepybunny in reply togreatcrestedgrebe

Hi again,

"I was immediately screened for coeliac - fortunately that was negative"

I suggest checking whether you had both these Coeliac tests..

1) tTG IgA

2) Total IgA

tTG IgA test checks whether patient has a particular antibody to gluten.

Total IgA checks if patient has IgA deficiency. IgA is an immunoglobulin.

Patients with Coeliac disease who have IgA deficiency will not make the antibodies to gluten that the tTG IgA test looks for so their results in tTG IgA test will be negative despite having Coeliac. Patients with IgA deficiency need alternative tests for Coeliac disease...see NICE guidelines and Coeliac UK links for more info.

UK GPs sometimes forget to order the Total IgA test. Did your GP remember?

Before you had tests for Coeliac disease, did the GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood tests?

One reason for a negative result in Coeliac test is that patient was not eating enough gluten prior to tests so not enough gluten antibodies were circulating in blood to register a positive result.

"Being armed with the facts about PA will be extremely helpful when I talk with her on Monday!"

I suggest trying to speak to PAS before Monday appointment. Best to phone. You will probably need to be a PAS member to access support.

pernicious-anaemia-society....

PAS office is open 8am till 12 noon on Sat, Tues, Wed, Thurs. May vary during holiday periods.

Although your IFA test result is "normal" it is still possible to have PA.

I suggest speaking to PAS about Antibody Negative PA (where IFA result is negative or normal range) and looking at BSH flowchart link in my other post which mentions Antibody Negative PA.

Local Guidelines

Something to be aware of is that most areas of the UK have their own local guidelines on treatment and diagnosis of B12 deficiency including PA. Unfortunately some of these local guidelines have not been updated for many years and some of them do not take account of the national guidelines and info in BSH, BNF, NICE CKS links. I suggest tracking down local guidelines for your area of UK and comparing them with national guidelines.

"good news is my GP is quite reasonable "

Help for GP

1) PAS website has section for health professionals. It is free for them to join PAS as associate members.

pernicious-anaemia-society....

2) PAS website has library section with useful leaflets and articles that PAS members can access. Some on forum have passed these to their GPs.

"An Update for Medical Professionals: Diagnosis and Treatment "

"Treatment is for life"

pernicious-anaemia-society....

3) I believe the PAS has access to a GP who understands PA. It may be possible for your GP to speak to this GP but you would need to liaise with PAS.

"We did wonder whether my taking omeprozole could have contributed."

PPI drugs have been associated with B12 deficiency in some studies.

"I declined the camera assessment for now (gatroscopy?"

Gastroscopies may be helpful for spotting signs of gut damage from PA, Coeliac, H Pylori and other gut conditions.

If you have a traditional gastroscopy then there may be parts of the digestive system that are not seen. Down throat and up colon could leave a part in the middle unexamined. There is another sort of gastroscopy called a capsule gastroscopy which I think examines more of the digestive tract.

nhs.uk/conditions/endoscopy/

In the gut, b12 is absorbed in a small area called the terminal ileum. If you have a gastroscopy I suggest asking if the terminal ileum is going to be examined. Damage to the terminal ileum may lead to B12 deficiency.

Were you tested for H Pylori infection?

Neurological Symptoms

If you have neurological symptoms then my understanding of the guidelines (I'm not a medic) is that B12 deficiency with neuro symptoms present should be treated with B12 injections whatever the cause, even diet.

Good luck

greatcrestedgrebe profile image
greatcrestedgrebe in reply toSleepybunny

Again thanks for much for this, I will read up on everything suggested

Sleepybunny profile image
Sleepybunny in reply togreatcrestedgrebe

Hi,

A bit more info....

B12 deficiency can lead to cytopenia, where the number of blood cells is reduced. Pancytopenia is where all three types of blood cells, white, red and platelets are reduced.

Cytopenia may involve just one or two types of blood cell being reduced. Thrombocytopenia , where platelets are reduced. Leukopenia, where white blood cells are reduced.

ncbi.nlm.nih.gov/pubmed/182...

Folate deficiency can also lead to cytopenia.

"I have unrelated, preceding neuropathic pain and numbness"

Is your GP sure this is unrelated to B12 deficiency?

What does your GP think caused the neuropathic symptoms?

Some people with b12 deficiency present with neuro symptoms first before any haematological symptoms. Neuropathic symptoms eg tingling, pins and needles , intermittent numbness in body extremities were among the first symptoms I noticed. I had fibromyalgia type pain in muscles, joints, bones etc early on.

If you do an internet search for B12 deficiency and neuropathy, there are plenty of articles.

Many people with pernicious anaemia , do not have anaemia...the name is rather confusing. See BSH Cobalamin and Folate guidelines.

B12 deficiency and anaemia

stichtingb12tekort.nl/weten...

B12 deficiency whether due to PA or other cause can develop very slowly over years and symptoms are sometime put down to menopause (women) or normal ageing.

If you have neuropathic symptoms and numbness then I don't know why you are not on B12 injections.

If neuropathic symptoms are in your feet, have you been referred to a podiatrist?

I believe in some cases , UK podiatrists with appropriate training can prescribe B12 injections.

martynhooper.com/2015/11/30...

"I am finding it difficult to think"

Some might think of this as brain fog which may be considered as neurological.

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Has your GP got a complete list of all your symptoms? See links to Symptoms lists in my other post. Probably worth emphasising any neurological symptoms on the list as hopefully GP would pay attention to these.

I hope your GP remembers under treated B12 deficiency may eventually lead to permanent neurological damage including damage to spinal cord, SACD.

b12deficiency.info/b12-writ...

I hope you get the treatment you need and your GP remains supportive.

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