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Pernicious Anaemia Society

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If malabsorbtion is cause of B12 and iron deficiency can it be diagnosed as Pernicious Aneamia?t

auldreekie profile image
8 Replies

I have both deficiencies but intrinsic factor test is okay  (sorry not sure if that is negative or positive?!)

Totally exhausted from coughing all night (a link has been shown with chronic cough and B12 deficiency!)

I am about to have a talk with my gp about all of this.  I've been injecting B12 so the blood test must have shocked him!!  But I can only function with an injection about every 10 days 0-:

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auldreekie
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8 Replies
Sleepybunny profile image
Sleepybunny

If the GP said the intrinsic factor is okay, he/she probably means it is negative.

Antibody Negative Pernicious Anaemia

I hope your GP knows that it is still possible to have PA even if an IFA test is negative.

If you google "BCSH Cobalamin and Folate Guidelines" it mentions Antibody Negative PA. I found page 29, a diagnosis and treatment flowchart useful.

Martyn Hooper, the chair of the PAS tested negative more than once on the IFA test before testing positive. He mentions Antibody Negative PA in his latest book,

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

healthunlocked.com/pasoc/po...

link to old thread about Antibody negative PA.

Copies of test results

Do you get copies of all your blood test results? I learnt from experience to get copies after I found out that what I was told was "normal" or "okay" over the phone or even face to face was not always normal or okay on the copies. I look particlularly at folate, ferritin, B12 and the full blood count(FBC).

Useful links

b12deficiency.info/

pernicious-anaemia-society....

01656 769 717

b12d.org

martynhooper.com/

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

Info on b12 treatment in Management section

auldreekie profile image
auldreekie in reply toSleepybunny

Sleepybunny you've answered my question thoroughly.  I am wondering, even it he conceeds it is PA what other treatment options he has because he is already letting me inject B12 but I have to buy spa tone myself to deal with the iron issue.  I will read all of those links and should be able to have an informed discussion with him.

thank you so much.

I believe I've had PA, undiagnosed for at least 12 years! - Not unusual I am sure though!

thanks so much

Gambit62 profile image
Gambit62Administrator

Strictly speaking PA is one specific absorption problem - an autoimmune problem.  There are other absorption problems which strictly speaking aren't PA but PA is often used as a catch all for B12 absorption problems.  For B12 absorption problems the treatment is the same whatever the cause.

I can't comment on the iron based anaemia.

deniseinmilden profile image
deniseinmilden

I have B12d but do not test positive for PA.  I inject every day - see "My Experiences"  under my profile, if you like.

I too get the cough if my levels drop.  I suggest you inject more frequently and make sure you have plenty of the cofactors that are required to metabolise the B12 (folate, potassium and magnesium for me) and take an iron and vitamin C supplement too!. 

I hope you find a solution soon. 

clivealive profile image
clivealiveForum Support

Hi auldreekie ,

You don't say  anything about your medical history or diet which may have caused your b12 deficiency.

For instance, have you had gastric surgery, are you vegetarian or vegan, are you diabetic and taking Metformin or on antacid medication such as proton inhibitors for acid reflux?

I am not a medically qualified person but I understand that either one or all of the above can affect b12 levels.

I wish you well for the future

Sleepybunny profile image
Sleepybunny

A link about causes of B12 deficiency.

b12deficiency.info/what-are...

Have you had surgery involving nitrous oxide in the past few years?

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

I found it interesting to look into MTHFR gene mutations. I hope to have a test this year for the most common mutations.

labtestsonline.org.uk/under...

One thing I gave to my GP was a copy of the PAS Symptoms Checklist with all my symptoms ticked

pernicious-anaemia-society....

See Symptoms Checklist

I also gave them a copy of Martyn Hooper's latest book and a copy of the BCSH Cobalamin and Folate guidelines.

I am not a medic just a person who has struggled to get a diagnosis.

Have you seen any consultants?

The BNF (Bristish national formulary) recommends referral to a haematologist if a person has B12 deficiency with neuro symptoms. See Management section in link below.

patient.info/doctor/pernici...

Referral does not always happen. I had many neuro symptoms and a definite B12 deficiency several years ago and was not seen by a haematologist. Sometimes people really have to fight for help and even then they don't always receive it. Some people find it helpful to take someone supportive to GP appts especially someone who understands B12 deficiency.

Some people have their B12 deficiency confirmed by other specialists eg neurologists, gastroenterologists possibly endocrinologists. I had some support from a neurologist I saw. I also think that other medics can spot signs of B12 deficiency eg dentists may spot sore tongue and mouth ulcers, opticians may spot deterioration in optic nerve, podiatrists may spot signs of neuropathy in feet.

A b12 deficiency will give you a relative iron deficiency because there is not enough b12 to form blood cells properly . You could still have a haemoglobin level in the " normal " range bizarrely . One of the effects of long term iron deficiency can be a persistent cough . Get yourself some methylcobalamin active vitamin b12 and grab a jar of blackstrap molasses at the same time . There is iron in the blackstrap molasses , as well as b6 and other nutrients and minerals . Beetroot is a good source of cobalt . Both the blackstrap and the beetroot contain trimethylglycine which binds to homocysteine and helps your body get rid of it . Homocysteine builds up when b12 levels are low and will cause problems for every bodily system .

fbirder profile image
fbirder in reply toillnesswhatillness

Not this garbage again.

No, B12 deficiency will not cause iron-deficiency anaemia. Why do you insist on repeating this nonsense?

And it's already been pointed out to you that blackcrap molasses contain pitifully tiny amounts of iron, certainly not enough to cure any iron deficiency.

So what if beetroot contains cobalt? Humans can't synthesise B12 from cobalt, so it makes no difference how much one consumes.

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