Pernicious Anaemia Society
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What to say to Dr??

Hi, I have tested positive for intrinsic factor, have a family history of PA, my mum, sister and daughter all have injections but I am not allowed! My level is has been 300 for about 20 years, it went down to 90 when I was pregnant 24 yrs ago and I was still refused injections. I was ill after I had my daughter and would not wish that inn anyone. My daughter gave birth 2 weeks ago, her B12 level went down to 92 ( i told her to tell them of family history) she has had loading injections and has been told she has PA and will be on injections for life so i am very glad of that. However I am still being refused even though i have symptoms (extreme tiredness, legs and arms hurt, extreme thinning hair) I am very upset as i feel that my life would have been a lot better if i had been allowed injections, I have 4 children and have struggled for years with symptoms., I will be going to my GP tomorrow and wonder if anyone could give me advice on what to say? Thank you :-)

3 Replies

Hi Emma,

With your symptoms, family history and being IF Abs positive I would ask GP for further testing (active B12 and MMA) as the serum B12 test is very crude. This is all recommended in the new guidelines.

To save me time have a look at the details and links in this post see:

I hope this helps,

Kind regards,



As you probably already know Emmaline, if you have already been diagnosed with PA, treatment with regular injections are for life, as stated in BCSH, NICE and UKNEQAS guidelines. It is outrageous that you are not being treated urgently as recommended. The symptoms you have could worsen and become permanent and irreversible.

In any case, the bar is set too low for B12 levels as many other European countries, and. Japan, recommend treatment under 550 pg/ml, "because deficiencies begin to appear in the cerebral spinal fluid below 550". " For prevention of disease in older adults, levels should be maintained near or above 1000 pg/ml." - from "Could,it,be,B12?", Sally Pacholok.

If it is not possible to change your GP, you could write or email this latest BMJ research document, which also gives up to date guidance on treatment. It might be worth taking someone with you, together with the summary (in case they have not read the complete document) to underline the seriousness of delaying treatment.

If your GP is still unable to help, consider self injecting as soon as possible.

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements. In irreversible

cases, e.g. P.A., the treatment should be continued for life. "

Good luck.


I'd contact the chairman of the PAS (Pernicious Anaemia Society) urgently.

Head office: 01656 769 717

He sometimes intervenes when people have been denied treatment they are entitled to.

Some of the stories are on his blog.

You might find it helpful to look at this website.

The sufferer who runs it has examples of how to write letters to your GP/consultant if you are not getting the treatment you need.

Is there any chance your mum and/or sister could go with you?

Good luck.


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