Can B12 level of 286 cause neurological symptoms?

Posted , 3 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hello everyone, can someone advise if my B12 level of 286 can cause neurological issues?  My problems started just after New Year with numbness in my chin, left side only. After a few weeks, I had a full blood count taken, my folate result was 1.6 so I'm now on folic acid 5mg daily and my B12 was 286, the guidelines I was told are between 200 and 700 so my Doctor has advised my B12 is "acceptable" and I'm on no treatment for B12.

However, my symptoms are getting progressively worse - I get periodic burning sensation/pins and needles in my face, scalp, shoulder blades, arms, hands, legs and feet, along with pressure in the back of my head. By 5 pm most days I feel like I'm 'sparking' (feels like small electrics shocks)... Doc thought it would be Atypical neuralgia because of my face so has referred me to see a Neurologist, however couldn't explain why I'm getting it nearly all over the body...

I'm getting pretty anxious now about what the cause can be and I can't help thinking that my B12 level is involved somehow?  I have two cousins that have to inject B12 regularly and an Aunt with Pernicious Anaemia (different sides of the family).

I would love to know everyone's thoughts on this and if I could try taking Methyl B12 to help potential nerve damage as I'm worried the nerve damage will continue to get worse.

Thanks everyone x

 

2 likes, 13 replies

Report

13 Replies

  • Posted

    The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

    https://b-s-h.org.uk/guidelines/guidelines/diagnosis-of-b12-and-folate-deficiency/

    Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

    https://cks.nice.org.uk/anaemia-b12-and-folate-deficiency

    The fact that you have relatives with P.A. may alert your doctor to test you for intrinsic Factor Antibodies (IFA)

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

    I wish you well 

    Report
  • Posted

    Hello There Pam, I'm also B12 low , I was diagnosed 28 yrs. ago . What sent me to the dr. Was my eye sight . I was going blind in left eye, had terrible whooshing in my ears, numbness in my face. My numbers at that time were 117 for b12 , folic was so low almost not readable. Because I'm in US the treatment is different, I now take a 1ml shot every 10 days, it has changed over the years. At the time my neurologist said the longer the symptoms go on the harder it is to return to normal . The numbers you quoted are so not fair. Not everyone has the same requirements , I'm best closer to 850 thus the shot every 10 days . I give them to myself . I really hope any of this is a help.

    Report
    • Posted

      Hello Suzanne, yes, thank you so much for writing to me, all advice and knowledge sharing is a great help to me.  I forgot to mention in my earlier post (and to yourself Clive) that I've had tinnitus for around 3 1/2 years now and that is also becoming more heightened. Clive has sent me some very good links to read and I have a Neurologist's appointment coming up soon so I'm going to pretty much demand I get more advanced tests rather than just the B12 serum test that I've had.  I managed to get a copy of my blood results from February and they state "B12 deficiency is highly unlikely" therefore my Doctor won't even entertain treating me, despite knowing all the neuro symptoms I'm experiencing.

      I've also noticed another sentence in my blood results "As of 01/09/17 B12, Folate, Red Cell Folate and Ferritin assays are not included in the Haematology Laboratory UKAS accredited scope of work"... Clive, would you happen to know what that means?  Have you seen it before?

      Thank you both for your help and support, it means a lot to me. 

      Wishing you both a happy and healthy week ;o)

      Pamela

      Report
    • Posted

      No I've not come across this before but it may mean that as the b12, folate ferritin assays are not "automatically" included in a FBC test they are not covered by UKAS which is a like QA accreditation body.

      Medical Laboratory accreditation (ISO 15189)

      UKAS provides accreditation to the internationally recognised standard ISO 15189 Medical Laboratories – requirements for quality and competence. 

      UKAS accreditation covers the following disciplines: 

      Clinical Biochemistry – Toxicology – Endocrinology

      Haematology - Blood Transfusion

      Microbiology - Virology - Parasitology – Serology - Mycology

      Histopathology – Cytology - Mortuaries

      Immunology

      Genetics

      Andrology

      Histocompatibility & Immunogenetics

      All CPA (UK) Ltd. customers are currently in the process of transitioning from CPA accreditation to UKAS accreditation against ISO 15189. If you are a Technical/Peer Assessor or a CPA customer, you may find the CPA Transition page useful. 

      Medical laboratories can also be accredited as an External Quality Assurance Provider (EQA) to ISO/IEC 17043, Conformity Assessment – General requirements for proficiency testing.

      UKAS also accredits organisations which provide point of care testing against ISO 22870 (Point of Care Testing: particular requirements for quality and competence), applied in conjunction with ISO 15189 (Medical  Laboratories: particular requirements for quality and competence). This accreditation is an important element in establishing and maintaining confidence in a point of care testing service.

      I wouldn't lose any sleep over it.

      I stand by what I said about The British Society for Haematology guidelines which say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

      Your doctor should be treating your symptoms not just looking at the computer screen and yes tinnitus is another symptom of B12 deficiency.

      Report
    • Posted

      Thank you Clive for clarifying for me once again. Truly grateful for sites like these, and good people like yourself, Suzanne and all other contributors willing to take the time to help people, not sure where we would all be without it! 

      Best regards,

      Pamela

      Report
  • Posted

    Hi Pam , the neurological problems I was having we're conclusively diagnosed as being caused by my undiagnosed pernicious anemia. I'm not sure where any other info comes from there are sites on Internet the state definitely that low. B12 causes neurological symptoms. The reasoning is low B leaves all nerves of the body unable to function correctly. You can read all the data but not everyone fits in the slots. My neurologist said the peusdo tumor that my brain suffered is classic for low B12. So if you get a Dr. That Wants to put you in a neat little diagnoses , I'm not sure how things work in UK but here in US are doctors aren't limited to govt, guidelines. I hope this helps you . I'm want you to know there are people out here that aren't just here to give the govt. guidelines ...research on the Internet ...read things from other places. In France the B12 levels aren't limited by 200 to 700 limits get on other forums, read others stories. Forums where there aren't others who run the opinions. 

    Report
  • Posted

    Hi Pam again I didn't get to finish , my point with the previous post was to say hear others so you won't feel alone. Yes I agree with Clive take someone with you to the appt. You'll proabably still be talked down to . Dr. talk down to all people but mostly women ...it's a class they take in med. school. That's a bit of humor , that's something I developed to deal with all the Dr.s that said I was imagining symptoms. One thing that Clive and I haven't mentioned ...low B12  gets a diagnosis of pernicious anemia and along with that comes other autoimmune diseases. I have vitamin D def. it's brought on my inability to absorb food correctly. Because you see your low B 12 comes from a lack of an enzyme in your intestines. I also have hasimotos disease and grew a very large tumor on my thyroid and had it removed 4 yrs. ago.  This all fits a pattern , my family comes from Cornwall England. I understand it's a DNA situation that's common in Western Europe. I understand it's common in India and lower Asia. I've done some investigation. Again I really hope this helps you 

    Report
    • Posted

      Hi Suzanne57663 that's good of you to join in with your helpful comments - here in the UK we have an uphill battle with the medical profession to get them to recognise the importance of diagnosing and treating Vitamin B12 and Folate deficiency.

      However I would loike to point out that a b12 deficiency isn't always necessarily Pernicious Anaemia.

      Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

      Vegetarians, vegans and people eating macrobiotic diets.

      People aged sixty and over

      People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

      People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

      People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

      People with a history of eating disorders (anorexia or bulimia).

      People with a history of alcoholism.

      People with a family history of pernicious anaemia.

      People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

      People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

      People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

      Women with a history of infertility or multiple miscarriages.The treatment for PA and non-dietary vitamin B12 deficiency is virtually the same and the symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

      I had gastric surgery at the age of 17 in 1959 having two thirds of my stomach removed due to a perforated peptic ulcer and it was another 13 years before P.A. was eventually diagnosed by which time I was a walking "Zombie".

      I "lived" for 40 year in total ignorance of what P.A. was all about and when I was diagnosed in 1972 all I was told was that I had two years to live unless I either ate raw liver three times a day or had four weekly injections of cyanocobamalin for the rest of my life.  I opted for the injections biggrin

      For many years I noticed a return of neurological symptoms in the run up to my next injection but my then "one size fits all" doctor categorically refused to increase the frequency.  I then joined the Pernicious Anaemia Society and started learning all I could and discovered that I was "not alone" - that there are many hundreds if not thousands like me out there. Armed with knowledge I eventually managed to persuade my doctor to increase my shots to every three weeks.

      I am not medically trained but I'm still "clivealive" and over 75 and not wanting anyone else to have to go through what I did through ignorance - because believe me - ignorance is not bliss.

      I wish you well and value your input.

      Goodnight from the U.K. 

      Report
    • Posted

      Hi Clive, yes I understand all the testing involved in diagnosing PA . BUT...here in US our doctors have the flexibility to treat in any manner needed. I have a hard time with all the guidelines that must be followed before treatment can start, that all of you in UK must suffer thru. The treatment guidelines are also not flexible. So everyone gets the same ...like you said " one size fits all"  Who does that benefit. ? What can change that ? I'm a child of the 60 's so protest is in my nature .....humor is a plus . Clive hope your doing well , my health as far as the B12 is going very well. My thyroid meds have turned into nightmare. I fight on as we all must do for our health. My best to you and all. 

      Report
    • Posted

      Good Morning Clive and Suzanne,

      Thank you both for your wonderful insight and sharing of your thoughts and experiences, I'm reading as much as I can before my next appointment so that I'm ready to fight my corner, but every piece of advice given on this thread is gratefully received and digested.

      Clive, I would have opted for the injections as well ;o)... I like liver, but not that much and certainly not in it's raw state... cooked and in gravy would be preferable lol

      It sounds like you have both had such a fight on your hands over the years to get a proper diagnosis so sharing your stories is definitely a help for myself and countless others out there.  It's truly sad when we have to do our own research and virtually battle with the Doctors to provide decent treatment so that we can feel human again!

      I am certainly feeling the "one size fits all" mentality with the medical professionals that I have seen so far, so I'm hopeful the Neurologist I'm about to see has a broader mind... I hope he has penciled in plenty time for me as I plan to be there for a while! .. and I'm taking my sister with me so god help the man lol...

      Thanks again, continued good health to you both and please continue to stay helpful in this crazy world we live in.  I will keep you posted ;o)

      Warm regards,

      Pamela

       

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up