Are my symptoms from B12 deficiency?

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Hi there,

I am hoping someone can help me as I am driving myself mad googling symptoms!

Approximately 6 years ago a blood test found I had macrocytosis and folate deficiency. I was never prescribed anything for the folate deficiency as I was told I didn't need to worry unless I planned on getting pregnant. Around 1 year ago I had some blood tests done; again confirmed I had macrocytosis and was deficient in B12. The doctor said at the time that the levels were low enough to start injections however due to my age (22 at the time) he wanted to try supplements first. I took the supplements however have never had a follow up to this.

I have been suffering terribly with different symptoms (the most noticeable being recurrent tongue ulcers, inflamed redness at tip of tongue and recurrent sores in my nose). I also feel extremely tired all the time, thin hair that doesn't grow and very brittle nails.

At the moment my tongue is red at the tip with numerous ulcers and is so painful. Could this be due to a B12 deficiency?? Any help would be much appreciated - I'm driving myself crazy!!

Thanks

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7 Replies

  • Posted

    It does sound very much like B12 deficiency. Have you been told what your levels were when tested? You definitely need to have another blood test for your B12 level, plus ferritin and folate.

    Your doctor should have re-tested your levels once you were put on tablets for B12, just to make sure you were able to absorb it via your digestive system.

    I think you may need injections to correct the deficiency. Have a look at the Pernicious Anaemia Society website for a full symptom list.

    Good luck with feeling better and getting the correct treatment. Marion 

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    • Posted

      Thanks Clive. It's very upsetting to hear about the problems loep is having getting the correct treatment. Sadly this is far from unusual. Doctors need to improve their knowledge about B12 deficiency and Pernicious Anaemia.

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    • Posted

      Don't I know it Marion. I lived in complete ignorance of "what it was all about" when I was diagnosed with P.A. 45 years ago.

      I knew no-one else with it and neither the nurses or doctors I saw down the years ever asked me how I was getting on and it wasn't until I noticed a return of some neurological symptoms in the run up to my next scheduled injection that I asked my doctor for an increased frequency. This "one size fits all" doctor simply laughed in my face and said it couildn't be the P.A. because i was having the B12 injections.

      So six years ago I joined the Pernicious Anaemia Society, discovered I was not alone and began to learn all I could about this "Silent Killer", and went back to my GP, convinced him he was wrong got the frequency changed.  

      I was originally on cyanocobalamin every four weeks and am now having injections every three weeks.

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  • Posted

    Are you still taking the B12 supplements?

    Also, if your Folate deficient and you are not supplementing that also you possibly won't be processing the B12 that is getting through.

    I am absolutely incredulous that "your doctor said at the time that the levels were low enough to start injections however due to my age (22 at the time) he wanted to try supplements first" Whatever was he playing at with your health? He was probably thinking of his budget.

    We need to know more about why you became B12 deficient in the first place. Can you "see" yourself in list below?

    Who’s at greatest risk for B12 Deficiency?

    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 that can interfere with B12 absorption including certain contraceptive pills.

    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".

    I suggest you make a list of all your symptoms present them to your doctor and ask for your Serum B12 and Serum Folate to be tested again.

    If they are stil low then demand treatment in accordance with the BNF Guidelines as follows.

    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, then every three months. 

    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, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

    If you have any further questions please come back

       

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    • Posted

      Hello,

      Thank you for this. I do suffer with auto immune disorders (psoriasis and arthritis) and suspected IBS. The blood test a year ago was done due to the suspected IBS.

      I was given a three month supply of the B12 tablets so I'm not taking them anymore.

      I will definitely be going back to the GP but starting to lose faith in them to be honest!

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    • Posted

      Don't give up and don't be fobbed of by your doctor talking about "normal" levels. He needs to treat your symptoms not look at his computer screen and he should remember his oath summed up in three little words "Do no harm"

      In the U.S, "experts" consider:-

      "...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."

      In Japan they start treatment by injection at levels under 500.

      Is it possible to take someone with you to the appointment? Your doctor is less likely to be dismissive in front of a witness.

      I am not a medically trained person but one who has had Pernicious Anaemia (a form of B12 Deficiency) for 45 years and I'[m still "clivealive" at 75 - old enough to be your granddad. biggrin 

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