B12 Levels/Neurological Symptoms

[mr15065]

Hi

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?

[clivealive Forum Support]

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

[mr15065 in reply to clivealive]

Hi

Thanks for your response, that was my third visit today. I took a list of symptoms and I was told that I shouldn't read things on the internet. I was also advised to take antidepressants, which I know is not the answer to my symptoms, especially the neurological ones. I have been referred to a neurologist, appointment not until November. However, the GP told me this morning that it is not B12 causing this as my levels are "normal"!

[clivealive Forum Support in reply to mr15065]

"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.

[fbirder in reply to mr15065]

Ask for an MMA test. Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If there's not enough B12 then the levels of MMA will build up.

It's a fairly good test for a B12 deficiency. The only better test is to have a course of proper treatment (B12 injections). But doctors seem unkeen on doing this.

Note that the test isn't really worth taking if you've been supplementing with B12 in the past few months.

[blackpot77 in reply to fbirder]

Where can i get this from B12

[fbirder in reply to blackpot77]

Your GP can order an MMA test. It is also available privately, but I can't recall where.

[srmika]

While they may think your levels are normal, I can say from experience that they're not. Mine were 267 to begin with and I felt absolutely awful -- zero energy, tingling fingers, serious mental fog, memory problems, and the feeling that my brain just shut off -- like I couldn't really feel emotions at all (which my doctor said mirrors depression). I've finally started to see my way out of this with B12 injections. I'm not a doctor, but I do think B12 would help you based on what you've described. It's sad, but you may have to push hard to get what you need. You can't overdose on B12, so there is zero reason why you shouldn't be able to try it (other than an idiot doctor blocking you from access). I wish you the best of luck. You can do this!

[Ujjwal2223 in reply to srmika]

I want to know how long it took for you to recover because I have the same symptoms and my B12 level is 175.and can you pls describe all your symptoms