What to ask drs

Hi I have low b12 not exceptionally low( 222) but I think it's low for me (i am similar to bi polar at the moment, high excitable slightly aggressive , then next minute quite as a mouse sometimes feeling depressed thinking it would be easier not to be here.

After complaining to the surgery about my treatment and constantly being brushed off I have a 'new ' appointment Monday,Dr didn't think I was very low but I would like a full blood count to make sure that my blood isn't enlarged or is that something that would have been done in casualty after blacking out ?? Am I able to get blood tests from the hospital as I can see online tests done at my surgery ? I haven't supplemented yet as I want to see the dr first.

9 Replies

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  • the test that you are suggesting - full blood count - is common and generally done through GPs.

    Be aware that 25-30% of people with B12 deficiency don't have macrocytosis - its a symptom not a defining characteristic.

    Have you made a list of symptoms?

  • Thank that's an interesting point I will list symptoms as I have been hypo and this just seems different.

  • Hi,

    Are you in UK?

    UK b12 info

    1) Pinned posts on forum

    2) PAS website

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    There may be stories on Martyn Hooper's blog that are relevant. Martyn Hooper is the chair of the Pernicious Anaemia Society.

    martynhooper.com/

    3) B12 Deficiency Info website

    b12deficiency.info/

    4) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    5) BSH Cobalamin and Folate Guidelines

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

    Flowchart in BSH Cobalamin Guidelines

    stichtingb12tekort.nl/weten...

    6) BNF Chapter 9 section 1.2

    Info on UK b12 treatment

    evidence.nhs.uk/formulary/b...

    7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with Uk b12 guidelines. I gave a copy to my GPs. He has written two other books about PA and B12 deficiency.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" had several case studies and I found it useful as some people had had similar experiences to myself.

    8) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

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

    Access to UK medical records

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

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

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    hdapatientcaretrust.com/

    I am not medically trained, just someone who has struggled for years to find answers.

  • Thank you for the replies some reading to be done this weekend I will write down a list of symptoms too as I seem to forget everything the moment I walk into the drs 😊

  • Yes *I am in the UK in the west country x

  • Hi,

    Flowchart I gave a link to above makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an IFA test and start initial b12 treatment. This applies whether b12 is low or within range.

    IFA (Intrinsic Factor Antibody) test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable. It is still possible to have PA even if IFA result is negative (called Antibody Negative Pernicious Anaemia).

    Are you symptomatic for B12 deficiency? Lists of B12 Deficiency Symptoms underneath.

    pernicious-anaemia-society.... see Checklist

    I ticked all my symptoms on PAS list and gave a copy to my GPs.

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    There are several local PAS support groups in UK.

    pernicious-anaemia-society....

    If you suspect B12 deficiency, my advice is to make sure you are well-informed as sadly some GPs, nurses etc are not as well informed as they could be about b12 deficiency.

    What to do next?

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-test...

    b12deficiency.info/what-are...

    Who gets PA?

    pernicious-anaemia-society....

  • Thanks this is great ,I will print it off tomorrow,I had private test done as I was so fed up with drs so did my own it came back as insufficient 222 ref 140-250 ,I have been anemic a couple of times before and been treated ,but I recently moved and changed drs then my new dr went on maternity leave and the cover dr was on annual leave when all my problems surfaced so I had been seeing locum dr ,she said "some" drs may belive that that is insufficient not an NHS drs. patient care ?

    Many thanks for information it is invaluable x

  • Hi Sweetart. What a ridiculous thing for a doctor to say...just goes to show how much some of them know about B12 deficency 😖.

    Sleepybunny's given you lots of useful information so hopefully you'll be better able know what your GP should be doing - and knowing - to be able to help you.

    And yes, you can get your blood test results from hospital visits - I usually ask for copies whilst there, or ask for them to be sent to you if a printer is not availabe (make sure you ask for the lab copies because they don't usually put the reference ranges in when the results are sent by letter).

    If you want to post your blood results, together with the reference ranges, (by putting up a new post) we will be able to help with interpretation. Doctors often say results are normal when they're not. Bumping along the bottom of the reference range (or indeed the top) is not good enough for some people but GPs don't seem to recognise this.

    And it's good that you're not taking any B12 supplements before all blood tests and investigations have been done because this could skew the results and make it difficult to get a proper diagnosis and treatment.

    Something that people who have found works well. Try to take someone with you when you go to see your GP. And if that person is able to read the information about B12 deficiency, and then step in to support you if necessary, even better. GPs are often more attentive and less hostile if a witness is present. Sad but true.

    I'm really sorry that you're feeling so depressed: depression and anxiety can be symptoms of B12 deficiency and I think when you look at the symptom checklist you might find that you have symptoms that you didn't even know were symptoms. Many people do.

    It's likely that you'll have more questions when you've read the information left in the links, so please post as often as you need to - there are lots of lovely people here who will be able to help and support you so at least you won't feel so alone and unsupported.

    And if you need any more help dealing with your GP please let us know as there are things that we can suggest to help you with this.

    In the meantime please take care and let us know how you get on 👍

    P.s. I'm going to come back and leave you some more links (in a new reply) to information and guidance that might be useful. Don't be daunted by what looks like a lot of information: most of the documents only one page long. One document is nine pages long but there are useful summaries throughout if you have concentration problems and don't feel you can wade through the whole thing. Just read at your own pace and try to highlight anything relevant to your case as you go along so that it's easier to find again. The information and guidance - particularly the highlighted relevant bits - will be useful to take long to your GP to help present and argue your case.

  • And here's the links:

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)(British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t

    stichtingb12tekort.nl/weten... (B12 and Intrinsic Factor)

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