Pernicious Anaemia Society
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What now?

I have just had my follow up appointment with the practice manager following the dreadful appointment with the initial doctor that diagnosed B12 deficiency.

The appointment was pretty rushed as I had to take my son due to husbands car breaking down 🙈 but basically the doctor has said test for intrinsic factor has come back negative so I definitely don't have PA

Since loading dose my B12 level is now 1600, which I imagine is to be expected? I am on oral B12 so he wants me to have another blood test to see if my levels have dropped (presumably indicating that I am not absorbing) just before I am

due my next injection and we will take it from there.

I explained I still feel pretty crap, although energy levels have definitely now improved. But still having range of symptoms including

Unexplained weight loss

Acne

Hair loss

Pale skin

Insomnia (new)

Anxiety/stress

Diarrhoea

Brain fog

Poor memory

Indigestion/need to burp all the time

He has advised I take esomeprazole for indigestion....which I said I wouldn't do as sure that won't help B12 absorption?

16 Replies
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Hi Nicoleflower81

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in your body.

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Thank you, he didn't mention anything wrong with my folate and said that fully comprehensive bloods had been done and nothing out of the ordinary. I am going to request copies of my bloods when I feel a bit better

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I don't think that Folate is routinely tested even in an FBC - but check to see if and when it was done.

Goodnight for now.

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Hi,

"the doctor has said test for intrinsic factor has come back negative so I definitely don't have PA"

I don't know why he said that.....according to BSH (British Society of Haematologists) it is possible to have PA even if Intrinsic Factor Antibody test has a negative result.

If you're in UK, has your doctor seen this flowchart from BSH Cobalamin and Folate Guidelines? Doctor might still be interested if you're not in UK.

stichtingb12tekort.nl/weten...

It outlines when PA can be diagnosed including when PA can be diagnosed after a negative result in Intrinsic Factor Antibody test (called Antibody Negative Pernicious Anaemia).

Link to BSH Cobalamin and Folate Guidelines

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

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

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

I'd also suggest it might be worth joining PAS and speaking to them before next appointment. PAS hopefully could pass on info about Antibody Negative Pernicious Anaemia.

I believe Martyn Hooper, the chair of PAS tested negative on IFA test more than once before testing positive.

His story is in one of his books below.

B12 books

"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.

"Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency" This is Martyn Hooper's first book about PA and B12 deficiency.

"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.

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Thanks Sleepybunny. I am in the U.K., the doctor didn't seem interested in the flow chart when I tried to show him. He seems to think I want to be diagnosed with PA, and seems to be absolutely convinced that my symptoms are psychosomatic. I feel like the more I press the more he labels me as mentally ill, and right now I don't have the energy to fight

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I empathise as I had a similar experience with one surgery I was at.

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Hi Nicoleflower81 Ask for a print out of your blood test results (some GP's have a habit of saying things are 'normal' when they are anything but . . . and you are entitled to have copies)

If you post them, with the ranges, on here people will be able to advice you better.

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Also in most surgeries that I've experienced (admittedly in London), it's not only possible but likely that you can see a different GP on a different occasion. Is it worth trying that?

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The doctor I saw yesterday was different to the doctor I saw originally. I made a complaint about the original doctor so was seen by the clinic practice manager. I suspect they will have discussed me at their staff meeting and already decided between the partners that I didn't have PA, the response was very script like

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It is difficult to understand how someone can categorically say that you don't have PA based on a test that is known to give false negatives 40-60% of the time (depending on the assay method), unless they have deliberately chosen to ignore the basic flaws of the test.

IFA coming back negative is a long way from ruling out PA as a cause of B12 deficiency ...

what are they doing about investigating why you are having digestion problems?

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They are giving me oral B12 and then I need another blood test just before my next injection is due in Nov, if my levels have dropped significantly they will continue to inject me. No further investigations for stomach problems.

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they shouldn't be treating you on the basis of serum B12 levels - its not current best practice.

what exactly is the oral dose that you have been given?

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50 micro grams of cyancobalamin

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if you have an absorption problem then they are far to small a dose to make any difference to you. That dose is intended to treat a dietary deficiency.

I am assuming that you do eat meat/fish/dairy in reasonable quantities so the deficiency isn't dietary.

Unfortunately you are going to have to try and educate your GP on the facts that

a) IFA does not conclusively rule out PA - far from it.

b) PA isn't the only absorption problem that will lead to a B12 deficiency and if the cause of a deficiency is absorption the chances are that you will be on injections for life - unfortunately the NICE guidelines aren't as clear as they could be. BCSH guidelines which they can access through the BNF but can also be accessed here are somewhat better

onlinelibrary.wiley.com/doi...

Other absorption problems: coeliacs, crohn's, low stomach acidity, H pylori infection (treatable), tapeworm (treatable),drug interactions

Do you have any digestion problems - using PPIs?

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I've had stomach problems for over ten years but investigations have never given any answers except I have inflamed stomach lining, as a result I have lived on gaviscon and esemeprazole for years which could be why I haven't absorbed B12

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more likely the esemeprazole as it is a PPI -class of drugs known to reduce B12 absorption.

highly unlikely that the tablets you have been given will be adequate, but much higher oral dose might be- however, not licenced as a medical treatment in the UK so you would have to source yourself - lots of sources as it is a vitamin supplement rather than a medication.

don't know if asking for a review of the use of PPI would work as sounds as if trying to convince your GP that normal range really doesn't apply after loading shots is going to be an easy job.

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