Same cross roads as many

Hello everyone. Been a reader of the great forum here for a while but never posted. I am now at a cross roads like many of you.

Im a 35 year old male (UK) went to the GP around 12 months ago with symptoms of extreme tiredness, confusion, mood swings, lichen planus mouth ulcers, plus others.

My grand mother, mother and sister all have a B12 deficiency so i asked the GP to run some bloods. (Which he reluctantly, questioning a deficiency as i had no pins and needles).

Results came back with a B12 at 115 or there abouts. He immediately diagnosed PA and said injections for life.

Had the loading doses then Had doses every 3 months for a year/ 18months. I felt better after injections for about 8 weeks then towards the 12week felt rubbish again with symptoms returning. But hey ho i knew they wouldnt give me them sooner.

Until recently.

I went for my 3 month injection the other day and i had miscalculated the dates, got turned away by the nurse as it was only 10 weeks since my last dose not 12.

I said that i was feeling like i needed it more regularly and asked for blood tests as they have never given me anymore since the original diagnosis.

Tests came back. B12 at 2000

Doctor ordered i stop the injections as in his words "you no longer have PA, it must be something else".

I questioned this and asked if it could be an absorption issue and he advised "there is no such thing its going directly into your blood stream via the injection"

Was also told "your body gets used to B12 and its addictive, so i need to set a new normal level for my body"

Now im not greatly educated in the area but im aware of functional b12 deficiency and genetic issues. (There might well be one due to so many family members having the same issue)

GP has now stopped my injections for 6 months.

At a bit if a loss as to where to go next.

Right now i feel ok (ish) but i dont really want to embark on a 6 month journey of all symptoms returning and giving me a rubbish quality of life.

I was thinking of asking for an active B12 test?

Or self injecting, but was worried about the b12 level being so high.

Any advice or guidance would be welcomed. Wanted to share my story as many of you have, i find it insane the way the medical system treats a vital vitamin deficiency.

Thank you in advance, and thank you for reading.

14 Replies

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  • Hi,

    I'd just suggest contacting PAS (Pernicious Anaemia Society) as soon as possible.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a couple of days to get a response

    Stories on Martyn Hooper's blog about how PAS have helped people whose injections have been stopped.

    martynhooper.com/

    Other UK B12 info

    1) Pinned posts on this forum.I'd recommend reading fbirder 's summary of B12 documents. Link to his summary in third pinned post.

    2) BSH Cobalamin and Folate guidelines

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

    Flowchart from BSh Cobalamin guidelines below, mentions when PA can be diagnosed. It mentions Antibody Negative PA (PA where Intrinsic Factor Antibody test is negative).

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should start treatment even if serum b12 is normal range.

    3) BNF Chapter 9 section 1.2

    Link below mentions that PA treatment is lifelong.

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

    4) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    5) B12 deficiency info website

    Lots of b12 info and an interesting blog

    b12deficiency.info/

    6) b12d.org

    b12d.org

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

    8) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about b12 deficiency with case studies.

    What to do next?

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

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

    Functional b12 deficiency

    nhs.uk/Conditions/Anaemia-v...

    ncbi.nlm.nih.gov/pubmed/191...

    "GP has now stopped my injections for 6 months."

    I wonder if GP is aware of the potential medical consequences of stopping B12 treatment in someone who has B12 deficiency eg spinal cord problems.

    There are people on forum who have mentioned SACDSC (sub acute combined degeneration of the spinal cord) to GPs.

    There is an article on SACDSC in PAS library section, available to PAS members.

    pernicious-anaemia-society....

    Are you a PAS member?

    pernicious-anaemia-society....

    Unhappy with treatment?

    Letters to GP

    Putting concerns in a letter may be less confrontational than a verbal discussion.

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

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

    hdapatientcaretrust.com/

    Proof of PA diagnosis

    Do you have any proof that you were diagnosed with PA? eg copies of test results for IFA intrinsic factor antibody test, copies of letters between Gps and haematologist

    Access to medical records

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

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

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

    "thinking of asking for an active B12 test? "

    Results of some tests may be affected if a person has supplemented recently.

    b12deficiency.info/b12-test...

    active-b12.com/frequently-a...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you for the very detailed post.

    I will be reading all of this before i re book an app with the GP.

    Thanks again

  • Hi

    Here we go again another GP stopping B12 if you have PA then as you well know it is for life😨 as the previous post says I would speak to the PA society for advice etc. Do you have a copy of your last blood results as there will be markers on there which can help understand your condition. Eg folate,ferritin etc and the good people here will support. Also another doctor saying b12 is addictive aaargh and as for overdose, give me strength (no pun intended as I have just started my Self injection route after years of struggling with the GPs). However you need to be armed with info from the website and PA society and see the GP again soon.

    Hope you get sorted Mark

  • Cheers mark. Will be obtaining copies and will post and get some advice. Thanks for the supoort

  • Hi Kristianjones_

    I'm not a medically trained person but I sincerely doubt that your doctor knows what he is talking about.

    Pernicious Anaemia doesn't just come and go, nor is it diagnosed on the basis of a serum B12 test coming back at "115 or there abouts" so unless the "bloods" he ran at the same time included tests for Intrinsic Factor and Gastric Parietal Cell antibodies there is no way he could conclude that you have P.A.

    However if the tests taken did include IF and GPC and they came back positive for P.A. then again your doctor (as others have said) was completely wrong to stop your injections despite the serum B12 test coming back "at 2000".

  • Thanks clive. No he did not. I believe the PA diagnosis was purely based on a low B12 serum level. He came in, said "very sorry" and gave me a leaflet about PA.

    dont want to lay blame on him i know how over worked GPs are but it seems there is a serious lack of education and care going on.

  • That's generous and understanding of you Kristianjones_ but I agree there is a lot of ignorance on the subject as evidenced by correspondence in this community.

    I've had P.A. for 45 years and am so grateful to my then doctor (she's still alive and a Dame for her services to medicine) who struggled long and hard via two "Schilling" tests (four years apart) to get the diagnosis.

    I wish you well for the future

  • Hi again,

    "asked if it could be an absorption issue and he advised "there is no such thing its going directly into your blood stream"

    I wondered if you had ever been tested for Coeliac disease? This may lead to B12 deficiency as it can affect the gut and therefore lead to absorption problems.

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

    "My grand mother, mother and sister all have a B12 deficiency"

    Do any of them have a confirmed PA diagnosis?

  • Thanks again. I dont think they do no.

    They were all "told they had PA"

    My sister went for a shilling test but got told they didnt do them anymore.

    Ad for coeliac i havent no. I will also continue the research. Thanks again for the support. Really is helping knowing im not alone

  • Hi,

    At the time you were diagnosed with B12 deficiency, did you have a full blood count (FBC)? The FBC results can contain useful clues as to whether B12 deficiency, folate deficiency or iron deficiency are possibilities.

    Macrocytosis

    Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and low B12/low folate may appear to have a normal range MCV on the FBC because the effect of low iron on red blood cells can mask the effect of low B12/low folate.

    labtestsonline.org.uk/under...

    patient.info/doctor/macrocy...

    Most important thing I learned......

    From years of trying to find out what was wrong with me, was to always get copies of my test results. I learnt to do this after being told everything was "normal" over the phone or even face to face and then finding abnormal or borderline results on the copies.

    Copy of B12 results

    "Results came back with a B12 at 115 or there abouts."

    Do you have a paper copy of the original B12 test result? GP surgeries will get copies of result from the lab they have sent blood sample to.

    On a B12 result which is under the reference range, it will usually say low or possibly have an asterisk by it to show the result is significant. The lab may also have included a note advising that an IFA (intrinsic Factor Antibody) test is recommended due to possibility of PA. If there is a similar note on your results, perhaps you could ask if the IFA test was carried out?

    Access to records

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

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

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

    It is a patient's right to ask for copies of their blood test results. There is likely to be a charge for making copies eg 50p plus per A4 sheet. My understanding is that a GP surgery can only refuse access to records if they feel it would harm the patient in some way to see their results.

    Although some GP surgeries offer online access to a summary of medical records, this is just a summary and may not contain all the info a person may want to see.

  • I am going to obtain all of my teat results and im working my way through all of the great information you have sent me.

  • You may need to hand in a signed formal written request for copies of blood tests in some GP surgeries. I think GP has to agree to request before copies can be made so may take a few days before copies are ready.

  • Hello, your doctor is taking your latest b12 result at face value. The 2000 reading only reflects the b12 serum in your blood which will be high because you had an injection, this reading has no value on the metabolised b12 at cellular level. You should either refer your doctor to the NICE guidelines for B12 deficiency or seek a private consultation with a neurologist who should have understanding on the appropriate treatment of b12. Or self inject. Your reading appears very low. My own reading last June was 164. I do not have PA but now realise my b12 must have been low for sometime and not diagnosed. Several years symptoms of vertigo, restless legs, last year the aqueous humour (fluid) behind my eye changed density and I am left with thick black floaters in my eye and also have mumbles in both feet and feeling of feet being stuffed with cotton wool and tight banding round ankles which is debilitating. Other symptoms, palpitations, poor sleep and memory loss among others. It was only when I started to research and put connections together that I asked for a b12 test to be done, even then with such neurological damage my doctor would have put me on the loading dose and then 1 injection every 3 months. My doctor thought my symptoms in feet were vascular related and referred me to vascular clinic which was going to take up to 18 to 24 months to be seen, I paid privately and was seen in several weeks. The vascular surgeon confirmed the symptoms were neurological and referred me to a neurologist who promptly wrote a prescription to my GP for 1 injection weekly, my doctor agreed to this. I also self inject 1 or 2 times weekly. Do not accept your doctors regime, , if you do not get enough b12 your symptoms will get worse. I hope this is helpful

  • A little follow up post. Had a GP appointment today.

    Went armed and ready with lots of very helpful info from all of you here.

    Asked how they actually diagnosed my PA and it seems i tested positive for gastric parietal cell antibody. No IF was checked. Also asked for all copies of my blood tests.

    i argued my case that injections shouldn't stop as per NICE guidelines and GP agreed. (Much to my surprise)

    I asked where to go next with it all and he has referred me to an endocrinologist for further tests.

    Re: malabsorption

    Still on the 12 week regime but hoping they will find a cause / reason and suggest 8 weekly injections.

    Feeling a lot better about it all and i would like to thank you all for taking the time to reply.

    Will add an update when i have one.

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