B12 Levels/Neurological Symptoms

3 years ago•8 Replies

I have been feeling tired, run down and generally unwell for some time. I now have added neurological symptoms, pins and needs, muscle spasms, burning sensation, blurred vision. My B12 levels were tested and found to be 230. I have been told that this is normal. From everything i have read, it seems that although this level is "normal" it can still be the cause of the symptoms I am receiving. I have been back to the GP today as I am feeling really frustrated by constantly felling run down. I was told that it is not because of B12 levels. Just wondering if anyone has any advice of what i can do next?

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clivealiveForum Support

3 years ago

Hi mr15065 make a list of all your symptoms, if possible take someone with you that has witnessed you having them and go back to your doctor and insist on him treating you in accordance with the BNF Guidelines for Vitamin B12 Deficiency.

He is unlikely to pooh pooh you if you have someone with you.

He should treat you - the patient - not just read what's on his computer screen.

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

I am not a medically trained person but there are others on here who will be able to give you good advice

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clivealiveForum Support

in reply to mr15065

3 years ago

"Normal" is only what it says on his screen and (with all due respect) you are not "Normal" because of the neuropathy you are suffering which may be being caused by low B12.

On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok & Jeffrey J. Stuart,. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

"However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."

Do you know what your Folate level is as this is essential to process the B12 that you do have.

I am not a medically trained person but there are others on here who will be able to give you good advice and I wish you well with your neurologist appointment. Take your list of symptoms with you.

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