Could it be b12?

Hi I have been having health problems last few years. I'm hypothyroid and have terrible digestive issues. I've learned through health unlocked thyroid that vitamin b is hard for thyroid patients to absorb. I was tested but was supplementing when tested so was told not an accurate test. I also was diagnosed with neuropathy in my legs. Had nerve testing confirmed. Pain in legs and pins needles pain in feet. Since I am supplementing b12 how could I be tested to find out if this is my problem? Health unlocked has been a lifesaver for me. Thanks in advance

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  • Hi Nanny23 welcome to this community.

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

    You are correct saying "I was tested but was supplementing when tested so was told not an accurate test." but do you know what the level was and the range between used? Also do you know what your folate (B9) level was?

    The symptoms you list suggest there could be a B12 deficiency and on page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

    Who’s at greatest risk for B12 Deficiency?

    Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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 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.

    Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

    In addition to your thyroid problems do you "see yourself" in any of the above?

    I wish you well.

  • Thanks so much for your reply. Just bought the book you mentioned.

  • I can understand your desire for tests so see what you can do but the best treatment is based on symptoms and as B12 is safe, if you don't get any where, it might be worth experimenting with a treatment regime at a higher level (ideally injections) to see if it works.

    Good luck!

  • Thanks so much for your reply. Just purchased from Thorne a good b12 and folate combination recommended by Suzy Cohen an advocate for b12 deficiency sufferers.

  • Hi,

    I'd also recommend the book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the Pernicious Anaemia Society which has members from around the world.

    pernicious-anaemia-society.... 769 717

    Lifetime membership costs £20. PAS phoneline is not working at moment but should be fixed soon. E-mail contact on this page pernicious-anaemia-society....

    Are you In UK?

    Other UK B12 websites

    b12deficiency.info/

    b12d.org

    martynhooper.com/

    Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range. Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    What symptoms do you have?

    b12deficiency.info/signs-an...

    pernicious-anaemia-society.... See Symptoms Checklist.

    UK recommended treatment

    treatment for B12 deficiency where there are neuro symptoms includes extended loading doses and maintenance injections at shorter intervals. See following for details of UK treatment.

    1) BNF (British national formulary) Chapter 9 section 1.2

    2) See Management section in following link. patient.info/doctor/pernici...

    3) Page 8 in BCSH Cobalamin and Folate Guidelines. I also found page 29 useful.

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thanks so much for all the info. I live in New York USA. but I find health unlocked UK forums to have invaluable information on them. My symptoms are neuropathy in legs. Thyroid hypo stomach issues. Terrible indigestion. On thyroid UK I learned hypos have trouble absorbing b12. I was tested but was supplementing when tested so results skewed. Thanks again for all the info. It's incredible how much a lack of one vitamin can affect people.

  • A USA B12 website

    b12awareness.org/

    The website was set up by Sally Pacholok, the author (with her husband) of the books ......

    "Could it be B12?: An Epidemic of Misdiagnoses"

    and

    "What's Wrong with My Child?: From Neurological and Developmental Disabilities to Autism...How to Protect Your Child from B12 Deficiency"

    There is a film "Sally Pacholok" of Sally's life which sadly does not seem to be available in the UK. I found the "Could It Be b12" book very comprehensive with lots of case histories.

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