Help! My Drs dont seem to understand

I had blood tests 2 weeks ago my b12 level was 148, i have a family history of PA so was referred for an intrinsic test. Getting the results from the nurse today she said my b12 was now 211 and that my intrinsic test came back at 1.4 so normal?

Ive never felt so rough in all my life. My dad who has it says im showing all signs like he did and im describing everything but he never told me what symptoms he experienced.

To me these results are on the low side or am i making a mountain out of a molehill?

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  • Hi saz5856 ,

    No I do not think you are making a fuss, in your case with and the low serum B12 and the family history and the symptoms you should urgently be referred for further testing, of active B12 and or MMA, homocysteine as with the new guidelines you are just now only classed as IF negative PA. The IF test is notoriously unreliable so testing negative (with in the ref range of "normal" set by your lab) only means that currently you test negative for IF. But your low serum B12 (under 200) already classes you are most likely PA, so get further testing, read these new guidelines, link below, and give copy to GP, if no joy insist on seeing a haematologist sooner than later, or get the tests done privately (ST Thomas does active B12 for £18,-).

    See:

    British Society for Haematology's Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders (2014):

    bcshguidelines.com/document...

    And:

    active-b12.com/What-Is-Acti...

    and:

    viapath.co.uk/our-tests/act...

    I hope this helps and you will get all the right investigations soon,

    Kind regards,

    Marre.

  • I agree with Marre - you are definitely not making a mountain out of a molehill - in fact you should be making a big fuss! In other European countries and Japan, your low serum test results, together with family history and symptoms, would be considered treatable for life, regardless of the unreliable IF test.

    From the book, "Could it be B12?" Here is an extract:

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.

    Extract taken from Martyn Hooper's "Living with Pernicious Anaemia":

    "Pernicious Anaemia runs in families. Doctors have known this for decades and recent research has found that the brother or sister of a patient with PA is 40 times more likely to develop the disease. It stands to reason therefore that patients who have PA will run the risk of passing on the condition to their children".

    It might also be worth emailing the latest research document Cmim BMJ- A.A. Hunt B12 to the surgery, as well as the guidelines given by Marre:

    cmim.org/pdf2014/funcion.ph...

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

  • Thanks!

    My husband kicked off with the surgery after i rang him to tell him the results and i have an appointment in 20 miniutes.

    I shall put these points across and let you know how i get on!

  • So I printed out those links and took them to see my Dr......

    I start b12 injections next week. She said they will monitor how effective they are but are worth giving a try!

    So hoping this is what is needed!

  • Hi saz5856 ,

    Brilliant you are getting treatment, well done!

    If you read the links above you will see no point in " monitoring how effective they ", as when you are on B12 injections your serum B12 will rise, no doubt about usually. But good to monitor serum Folate and Ferritin as both are needed in good supply with B12 for good blood production. Often if you give loads of one (B12) the demand on others can cause then to deplete.

    Anyway, hoping you will feel a lot better soon, be aware it can take some time, for some more months than weeks,

    Kind regards,

    Marre.

  • Oh well done and I hope you start to feel better soon.

    Just in case you need it, here is the PA Annual Report. If you look at page 2, he mentions the guidelines and fact that some people still have PA, even though the IF test is negative.

    pernicious-anaemia-society....

  • Very well done!!! You did the right thing. It's what I had to unfortunately do too. An uncomfortable experience but hey ho, worth it in the end.

    If your GP is monitoring the effectiveness of injections I hope they mean for symptoms, in which case it would be really good for you to start to keep a symptom diary to monitor this and present them. Bear in mind that things may get a bit worse before they get better as things start to repair and as advised, make sure your other B vitamins remain in balance by taking a good B complex and methylfolate supplements. Good luck- hope you feel better soon. Starting B12 was the best thing I ever did- I can't believe the difference it has made to me a year on. I was a right mess this time last year. Still got some slight symptoms occasionally as GP has reduced frequency of injections but still much much better than I was for a long time.

  • Well i just had my first loading injection! It did sting but was ok!

    I asked about what my foalte and ferritin levels had been at the last blood test

    Ferritin 153 and folate 8.4 but all the nurse could tell me is that they are within range!

  • Seems OK your folate and ferritin comparing it with what my lab uses for normal ranges. Perhaps get into the habit of always getting copies of your blood tests (I do) so you can see in the future what changes and what has or not been tested etc, and hopefully they will include the ref rangers used for "normal" by your lab.

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