Pernicious anaemia?

Hi everyone. I am new here. I have just had some bloods done privately and posted them on thyroid uk's site. After a partial thyroidectomy 25 years ago I was told I had autoimmune hypothyroid and have taken thyroxine ever since.

Anyway, my B12 result is 168 ug/L where <103 is deficient and 103-185 is insufficient. On thyroid uk I was told that could be indicative of P A.

Folate is 12.14 (2.91-50) and ferritin 238 (13-150).

My G P refused to test my B12 a few weeks back. Has anyone any suggestions? Should i be worried? Thank you.

15 Replies

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  • Hi,

    Are you in UK? B12 treatment can vary from country to country.

    You mention having an autoimmune cause of hypothyroidism. Having an auto-immune condition can increase the chances of developing another.

    Risk factors for PA and B12 deficiency

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    Are you symptomatic for B12 deficiency?

    pernicious-anaemia-society.... I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked plus I added any symptoms not on list.

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this book to my GPs.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    Blood Tests

    ferritin 238 (13-150).

    Your ferritin level appears to be above range. Has your GP commented on this? Has GP ordered a set of iron studies tests?

    labtestsonline.org.uk/under...

    More links about blood tests

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    patient.info/doctor/folate-...

    UK B12 documents

    1) BSH Cobalamin and Folate Guidelines

    Some UK GPs may not be aware of this document. I gave a copy of it to my GPs.

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. It is also made clear on flowchart that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test and start initial B12 treatment.

    IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range.

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    Emphasises the need to treat people who are symptomatic for B12 deficiency even if B12 results are within normal range.

    3) BNF British National Formulary Chapter 9 Section 1.2

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    Details of UK B12 treatment can also be found in BSH Cobalamin and Folate Guidelines

    PAS (Pernicious Anaemia Society)

    If you suspect PA is a possibility , it may be worth joining PAS.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone available

    B12 blogs (UK)

    There may be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.

    martynhooper.com/

    Also an interesting blog on "B12 Deficiency info" website about B12 issues.

    b12deficiency.info/

    Unhappy with treatment?

    Link about writing letters to GPs about B12 deficiency (mainly UK info)

    b12deficiency.info/b12-writ...

    Point 3 is about being refused diagnostic tests for B12 deficiency.

    Point 5 is about being symptomatic with an in range b12 result.

    Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

    Person who runs B12 Deficiency Info website can be contacted by e-mail. Contact details on website.

    CAB (Citizens Advice Bureau)

    citizensadvice.org.uk/health/

    HDA patient care trust

    hdapatientcaretrust.com/

    UK charity that offers free second opinions on medical diagnoses and medical treatment.

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Wow that's a huge amount of info to get through!! Thank you so much for posting such a comprehensive list. I think maybe I need to read up a bit before I make an appointment to see my G P.

  • Yes I'm in the UK.

  • "I think maybe I need to read up a bit before I make an appointment"

    I agree as sadly my experience has been that B12 deficiency is not always as well understood as it should be by some UK doctors.

    Do you eat a diet that has b12 rich foods eg meat, dairy, eggs, fish, shellfish?

    If yes, it becomes more likely that you have an absorption problem. Might be worth writing out typical weekly diet for GP.

    Have you ever been tested for Coeliac disease?

    coeliac.org.uk/coeliac-dise...

    nice.org.uk/guidance/ng20/c...

    As Coeliac disease can affect the gut, it can lead to absorption problems with some nutrients eg B12.

  • Thank you once again Sleepybunny! What a good idea to write out a typical weekly menu for the Dr. I eat eggs, fish chicken. Rarely red meat and no offal.

    I did the questionnaire on coeliac up and had a coeliac blood test. Was told it was normal but I'm afraid I didn't ask for results.

    Problem is that I moved home 7 months ago and have a new G P. Also chronic fatigue has been even worse with all the effort of moving.

  • When you had Coeliac blood test was it just a test for Coeliac antibodies?

    NICE guidelines for Coeliac disease (see link to NICE guidelines in my post above) indicate that someone with suspected Coeliac disease should have both Coeliac antibody test (tissue transglutaminase antibody test) plus a test for total IgA (an immunoglobulin).

    Sometimes GPs do not order the IgA test.

    A person with IgA deficiency will not make Coeliac antibodies and therefore standard test for Coeliac disease will come back negative and person may need an alternative test for Coeliac disease.

    See Coeliac UK link about blood tests in post above.

    "but I'm afraid I didn't ask for results"

    Difficult experiences have taught me the importance of always getting copies of blood test results.

    If you want to know what the results were, you could ask for copies (will probably be a charge), ask to view the results (no charge), ask if your GP surgery has online access to a summary record (no charge).

    Access to medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    nhs.uk/chq/Pages/2635.aspx?...

    ME/CFS

    B12 deficiency can be misdiagnosed as ME/CFS.

    martynhooper.com/2015/08/04...

    b12deficiency.info/misdiagn...

    You may also be interested in the news that NICE guidelines on ME/CFS are to be reviewed.

    meassociation.org.uk/2017/0...

    I had CFS as a label and for me it meant that all investiagtion into other possible causes stopped.

    There are quite a few on here who had ME/CFS as a diagnosis before they found out they were B12 deficient.

  • I remember he asked for my Iga test. I'm not sure if it was done, seeing that haemotology here seem to be a law into themselves. I don't remember having the antibody test but I suppose I must have done. I have had a lot of blood tests recently.

    I will ask for all my results. Unfortunately I'm in Wales and the rules in the Wales NHS are different.

    Thanks Sleepybunny

  • Hi,

    Access to Medical Records (Wales).

    nhsdirect.wales.nhs.uk/life...

    Have you considered talking to your MP about your difficulties?

    parliament.uk/mps-lords-and...

    The PAS (Pernicious Anaemia Society is based in Wales.

    PAS members can access details of PAS support groups.

    pernicious-anaemia-society....

    There is a PAS support group in South Wales and one in North Wales

    These support groups can be a useful source of support and info about helpful GPs etc.

    Not every PAS member has a confirmed diagnosis of PA, probably due to difficulty in getting a diagnosis.

  • Hi Hippiechick "I may need to read up "

    And I suggest you get print outs of any of your blood results - some GPs say everything is 'normal' when it is not.

  • I will make sure that I always get a print out of my results from now on. Thank you.

  • And take someone with you to appointments, if you can, preferably a 61/2 foot boxer or weightlifter!

  • Hi Hippiechick

    Whatever kind of NHS doctor "refuses" to run a blood test? That is absolutely iniquitous.

    In addition to your serum B12 you will also need to have your Folate level tested.

    Do you have any neurological symptoms?

  • I know clivealive! I was so shocked that I didn't challenge him. As I said l have recently moved to a new surgery and I don't like any of the 3 doctors. My folate was 12.4 (2.9-50). I had a blood test with medichecks.

    Yes I have some Neuro symptons e.g peripheral neuropathy,pins and needles,numbness, inability to find words, chronic pain. Although I do have oseoarthitis. But I have been diagnosed with fibro and CFS and I don't think that's right.

  • All the neuro symptoms you describe can be found on lists of B12 deficiency symptoms including PAS checklist.

    pernicious-anaemia-society....

    Some people on the forum have written to or discussed the potential consequences of untreated or undertreated B12 deficiency with their doctors.

    There is an article about SACD, sub acute combined degeneration of the spinal cord available to PAS members on PAS website. This can happen in severe B12 deficiency.

    pernicious-anaemia-society.... See Symptoms section

    SACD is also mentioned in this PAS news item about the neurological consequences of PA.

    pernicious-anaemia-society....

    SACD is mentioned in this blog post on Martyn Hooper's blog

    martynhooper.com/2010/09/21...

    " I have been diagnosed with fibro and CFS and I don't think that's right."

    Snap....I was too and I didn't think it was right either. ME/CFS is supposed to be a diagnosis of exclusion eg other conditions should be excluded before a diagnosis of ME/CFS is given.

    Have you asked to be referred to a neurologist?

    if you have peripheral neuropathy in your feet, you could ask for a referral to a podiatrist. As I mentioned above, some UK podiatrists can prescribe B12 injections.

  • Thanks to everyone who has given me such helpful suggestions today. I have joined PA Society and have ordered Martyn Hooper's book from Amazon.

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