Pernicious Anaemia Society
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struggling to get treatment - B12 deficient?


I was hoping for a bit of advice as I believe I am defincient in B12 but my blood levels are deemed normal.

My latest results are as follows:

serum B12 278pg

serum folate 6.7

serum feratin 46

White cell count - 3.6 10*9/L

Red blood cell count 3.87 10*12/L

Heamoglobin estimation 131g/L

Haematocrit 0.38

MCV 99.0fL

MCH 33.9pg

MCHC 342 g/L

Neutrophil count 1.13 10*9/L

I don't think I have PA, I had an emergency bowel resection following adhesion's from an appendectomy in France about 13 years ago, where 1.15meters of my lower ilium was removed. I suffer with diarrhea almost daily and am always tired. I also have numbness and sharp pains in the fingertips of my left hand, which started around a year and a half ago and have since got progressively worse. The doctor said it's probably due to a trapped nerve in my elbow or injury - but I don't recall injuring it.

My notes have not been transferred properly to my NHS record unfortunately.

From your opinions could I be deficient in B12? If so how do I get my doctor to listen to me? I've been trying to get help for years.

Thanks so much

4 Replies

First off we need to know the normal ranges for your test results Yhey're normally given in brackets aqfter the number, so B12 278 pg/L (180 - 1028) for example.

But, with 1/3 of your ileum missing, absorption problems may be expected.

Gently ask your doctor if B12 deficiency, caused by removal of part of your ileum, could be a possibility. And that you think a course of B12 injections would be able to determine yes/no for sure. If you don't feel better after 9 jabs over three weeks then you promise to stop mentioning B12.

You could also point out that your MCV is a bit high (assuming the normal range of 77 - 95 pL, as is your MCH (normal 27 - 32 pg). Both of these could be an indication of Macrocytic Anaemia - a symptom of B12 deficiency.

If the doc wanted to be sure they could get a Methylmalonic Acid (MMA) test done. That would give a good indication that your B12 wans't working properly.

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Here is info which might persuade your GP to treat without delay as what many consider a normal test result is not normal, as it looks very likely that your neurological symptoms are a result of not being able to absorb vitamin B12, and should be treated with B12 injections without delay to avoid irreversible damage.

"deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml."

You could also print out the latest BMJ research document - page 1, "What is the Pathophysiology of Vitamin B12 Deficiency" - 2nd paragraph:

"If there is resection or disease of the gastric mucosa or terminal ileum, this leads to B12 deficiency as a result of malabsorption."

Extract from BCSH guidelines:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

Very best wishes for a good outcome

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Thankyou both so much for your replies, I have an appointment with the Doctor tomorrow and will pass on that information- hopefully they'll listen this time!!


I had the Terminal Ileum removed over 40 years ago and later further resections. Sadly they forgot to tell me that I would need B12 support for ever. My B12 has been in range - but under 500 since 2004 when I started to test. I had spinal surgery for stenosis in 2007 which I now believe was de-myelination of the spinal cord due to low B12 over many years. They told me at the time that my leg numbness was due to the stenosis - ummm !

I live in Crete and had the surgery done in Germany. Two years ago I started B12 injections weekly and have noticed the pain in my lower back has lessened. Just wish I had known about the B12 earlier in my life. I also was diagnosed with Crohns when I was 27. Now 69 and doing fine :-)

As you can see from the above link - neurological symptoms feature fairly high with B12D. Also that ranges start at 500 in Japan ? !

I hope all goes well with your GP and you get the treatment you so deserve. Information is power ....

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