Pernicious Anaemia Society
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Progressive symptoms - B12 deficient but not PA, where to go for help?

After endless visits to the GP surgery over a period of four years I was finally diagnosed by a locum with B12 deficiency and admin life long injections. Although, they state I am not PA they appear to be uninterested in finding the underlining cause. For the past 12 months my symptoms are progressive and with an unsupported GP surgery, I feel I am left with no alternative but to go private but I am unsure as to where to go from here.

Current symptoms:

Impaired speech at times - happening more often

Difficulty with my cognitions - fog brain more often

Numbness and pins and needles that is now in my arms, hands, legs and feet

New Cramp in the feet and toes

New Severe pain in the groin on both sides

Skin sensitive to sunlight

Easily bruised

Continuous Spotting

Extremely fatigued

My recent CBC indicated the following: 10.07.12

Hb 14.1

WBC 6.1

Platelets 136

Rbc 4.51

Mpv 89.6

PVC 0.404

Much 31.3

Mchc 34.9

Neutrophils 3.7

Lymphocytes 1.7

Monocytes 0.4

Eosinophils 0.2

Basophils 0.05

Plasma viscosity 1.46

Crp 2.0

eGFR by Mdrd >60

Urea 4.8

Creatinine 78

Sodium 136

Potassium 4.1

Serum ferritin 24.7

Serum bit b12 626

Serum folate 3.4

Red cell Folate 821

I went to the surgery today upon their request to go through my results and find the temp locum to be extremely dismissive and left me with the feeling that as a NHS patient I had had a lot of investment that had amount to nothing.

Please could anyone help me as to where to go from here?


1 Reply

Hi Rebecca,

I'm no expert but this :"Continuous Spotting " is not a PA or B12 def sign and you should mention that to your GP. It could well be a reason for your other symptoms.. Your bloodtest look OK but it is difficult to say anything with out the ref range for "normal" used by your lab ; say MCV 88 ref range 80-99 etc.

I found paying privately to see a heamatologist very helpful, she explained a lot more and knew far more, did far more tests and referred me (back on NHS) to neurologist. All helped me get better treatment (found to be folate def, and got 2 monthly maintenance of B12 jabs, diagnosis of PA, positive for IF antibodies etc.)

I hope you will find going private as helpfull as I did, it was not that expensive and the tests were done on NHS.

Wishing you good luck,



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