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B12 still below 600 after 6 weekly shots.

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Pixiestix
Pixiestix

I have been feeling ill for a few years now. My doctors thought I possibly had MS because of my symptoms, but after many tests, have come up with nothing. They tested my B12 and it came back at about 200, so in the normal range(?). My neurologist decided I should start getting weekly B12 shots to see if that helps. It has helped some. I have gotten some of my strength back, but I still am having a hard time with my balance and stamina. I still have a hard time using my hands and walking. My last blood test showed that, after 6 shots my B12 level is still under 600. My doctor was confused by this and said that she would have expected my level to be above 1000 by now. While doing my own research I came across pernicious anemia and asked her if I had been tested for it. She said I had been tested for general anemia and it had com back negative. Is the test for pernicious anemia different? Is it possible to have it even if the general test came back negative?

1 like, 7 replies

7 Replies

  • jazzyanne
    jazzyanne Pixiestix

    Posted

    hi am not sure if PA means your have low folate , for b12 to really work your folate and ferritin have to be at a good level, there is a few facebook page for b12 and pa that give test advice on testing and levels 
  • clivealive
    clivealive Pixiestix

    Posted

    Hi Pixiestix,

    I am not a medically qualified person but one who has had Pernicious Anaemia for nearly 45 years.

    Your B12 level at 200 is very much on the low side and well done your neurologist for getting you started on injections.

    The tests for P.A. are very specific but before going down that route can we find why you may be B12 Deficient?

    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.

    Can you identify yourself in the above list?

    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 patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

    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 are still having neorological symptoms your frequency of injection would need to be increased.  

    Your "now" level at 600 suggests either you are "using it up" OK or excreting it via your urine.  

    Did your doctor test your folate level as this needs to be "healthy" to process the B12?  The two work together.

       

  • Dena58
    Dena58 Pixiestix

    Posted

    My diagnosis is Intrinsic Factor Antibody with Pernicious Anemia. This is a life long fatal illness. It is managed by supplementing a number of nutrients and injecting B12. I self inject weekly many inject thrice weekly in lower doses. Before being diagnosed, I was bedridden, asleep, for a year.  I owned several large businesses and had to sell and retire because my memory was off, I was breaking bones, I was exhausted sleeping 20 hours a day, I lost the use of my left leg to neuropathy, my bone density dropped, and constant ringing in the ears.  This started 10 years ago and 15 doctors later I had an answer.  The problem is, this is not a subject well studied in medical school.  My husband and I have research and gathered information.  My internist is open and willing to discuss and try different things.  He gives me leeway to experiment with dosage and tell him how I feel. Keep records.  I carry a list of prescription Meds and supplementals I take daily and update any changes.  I hand it to the nurse each doctor visit. The saying doctor knows best does not apply to this illness.
    • clivealive
      clivealive Dena58

      Posted

      Yours is a tragic case Dena58 and it highlights the necessity for doctors to be better educated in the problems of B12 Deficiency and P.A.

      I was 17 years old in 1959 when I had a perforated peptic ulcer and had two thirds of my stomach removed yet it was not until 13 years later in 1972 that I was diagnosed with P.A. and "threatened" with having to eat raw liver three times a day.  Much as I like liver with bacon and onions I was gald to be offered the alternative of four weekly cyancobalamin which has "kept me going" for nearly 45 years.

      For nearly 40 of those years I lived in complete ignorance of what P.A. was about as I knew no-one else who had it and my doctor or monthly nurse never enquired how I was getting on although I had come to realise that I was beginning to struggle in the run up to the next injection..

      For years I used to "slip in" an occasional three week injection two or three times a year "when I felt the need" but in 2010 I made the mistake of saying to my nurse "see you in three weeks".  She looked at the prescription which (of course) said "every four weeks", refused to giive it and reported me to my doctor who called me in to see him.

      I tried to explain to my doctor about my symptoms, pins and needles, numb thigh, stabbing pains in hands, burning feet and legs etc etc etc and he simply laughed at me saying "it can't be your P.A. because you are having the injections" and he too refused to allow anything but "what it says on the tin" (with apologies to Ronseal).

      I then joined the Pernicious Anaemia Society and my first post on their forum was to the effect "Am I the only person in the world that feels the need for more frequent injections.....?" and was astounded by the response and from then on I built up my case and arguments.

      Eventually I wore my "one size fits all" doctor down to "allow" me the "occasional" three weekly injection and he changed the prescription to read "as instructed".  I've since changed doctor and she has now agreed for me to permanently have three week jabs.

      Yes! This is a war against the ignorance among so many medical practitioners.  Goodness knows what damage I have suffered since that surgery in 1959 living on ever dwindling reserves of B12 and then struggling to maintain a balance in my own ignorance.

       

    • Dena58
      Dena58 clivealive

      Posted

      You inspire and encourage me that I have many decades to enjoy my grandsons if I educate myself and nudge my physician in the right direction.  The paralysis in my leg lasted 4 months and woke me up to the fact that I was going to have to drive this mission myself.  I still have chronic neuropathy in finger, toe, it moves around. Constant ringing in my ears, some days louder than others. The big surprise for me in joining this group was how many people have breathing issues.  It now makes me question my COPD diagnosis.

      Three weeks ago, I was in agony with what I thought was a massive migraine, stroke or aneurism and after weeks of pain and testing, I was told yesterday that I have a disk in my neck has collapsed.  They have been keeping me pumped full of steroids and the pain has lessened so I can travel this next week but on return I must make a round of a neuro and ortho surgeons so I can decide the next step. Amazing how much can happen with this PA. 

      Both my daughters have low B12. They have both begun SI in hopes of delaying damage and Intrensic Factor Antibody.

      I wonder how many in this group have been diagnosed with Intrensic Factor Antibody.  

  • Pixiestix
    Pixiestix

    Posted

    Well, I was able to get my folate tested. It is at 6.9. I haven't seen my dr yet, but is that normal? From what I found it seems to be. I was thinking about asking to have my B12 tested the day after my shot and then again right before the next one. I thought that might show if it is just passing through me or if I'm using it up to fast. What are your thoughts on this.

    Thank you all for your comments and help. I have been trying to figure this out for so long. I just want to get back to being able to hold a job and have regular use of my hands again.

    • clivealive
      clivealive Pixiestix

      Posted

      Hi Pixiestix it depends on the reference range the lab uses but 6.9 looks to be on the low side.

      My folate level in March was 18.2 with the range between 3.1 and 20.5 - it was "flagged" as NORMAL and I take a folic acid 400µg tablet every day as well as what I get from my daily food. But then no two people are the same which is why doctors need to treat us as individuals and not just a set of figures on their computer screens.

      I'm not a medically qualified person but as I understand it folate is used to process the B12.

      As to further serum B12 tests - once injections have been started any results will be "skewed" as they will only show what's whizzing around your body, not how much is getting in at the cell level where it is needed.

      Hopefully when you see your doctor he/she will act on your folate level appropriately.  I'll be interested to hear how you get on.

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