I`m new here, and confused

Hi All,

I have been diagnosed as having P.A., ( Intrinsic factor antibodies - positive, and Parietal cell autoantibodies- positive ) which showed up on a recent blood test for fatigue ( had symptoms for over 4 years ).

G.P followed up with Serum B12 test ( 348 ng/l ) , Serum folate 5.5 ug/l , Ferritin 125 ug/l , Red blood cell ( RBC ) 5.4 , Platelet count 226 , MCV 88.1 fl , MCHC 340 g/L

My G.P. gave me a single B12 injection " to see if it had any affect " and said come back in about a month. Needless to say there has been no affect from the single shot, so I went to surgery but had to see a different Doctor to my usual G.P., and she stated she would not have treated me with B12, and tried to fob me off with anti-depressants.

My symptoms are vertigo. tinnitus, itchy ears, tingling/numbness in fingers ( especially upon awakening ) aching joints, tiredness, lethargy, yawning/sleeping in daytime, feeling totally drained even after 10 hours sleep.

Has anyone else had similar test results ?.

I was actually pleased when told I had positive results for P.A,, thinking that finally I know what`s been causing my symptoms after God knows how many Blood tests, chronic fatigue clinics, sleep apnea tests in Hospital ,etc., only to be totally deflated when the follow up B12 tests were not in the "low" category.

I am seeing my usual G.P on 5th December, but don`t know what to expect.

Best wishes,

Barry

7 Replies

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  • Hi Barry

    I have just been told my levels are 50 I am feeling everything you have said, and more to be honest . I have had two injections , the second one I had to fight for it. I had first on Thursday, felt ok but went down hill so fast I felt worse the next day, I called the doctor (after getting through all the guard dogs) then instead I needed another injection, that was friday. Today I feel like I have been dancing all night, I am to have injections every other day, it will see how I feel, but if no improvement I will be camping up my doctors.

    Regards FNA

  • I've assumed you are in UK.

    "I have been diagnosed as having P.A., ( Intrinsic factor antibodies - positive, and Parietal cell autoantibodies- positive ) "

    "I was actually pleased when told I had positive results for P.A"

    Hi,

    Shocked that with a confirmed PA diagnosis you have only received one injection. Pernicious means fatal which PA used to be before ways of treating it were found.

    Inadequately treated or untreated B12 deficiency can result in permanent neurological damage eg sub acute degeneration of the spinal cord.

    If you are in the UK, a confirmed diagnosis of PA means you should receive B12 injections for life. Standard treatment is 6 loading injections over 2 weeks then injections every 3 months

    BUT if you have neuro symptoms (eg tinnitus, tingling, pins and needles, balance issues etc) you should get loading injections every other day for as long as your symptoms improve then injections every 2 months. My understanding is that you should also see a haematologist or GP should seek advice from haematologist.

    See BSH Cobalamin and Folate Guidelines for more info on this. link to document below.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency"

    Treatment info is also in the BNF (British National Formulary) chapter 9 Section 1.2 Your GP will have a copy of BNF on their bookshelf or access to it online. Link below.

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

    "G.P. gave me a single B12 injection"

    "she stated she would not have treated me with B12"

    PAS

    I'd suggest that you consider joining the PAS or at least contacting them for info and advice ASAP.

    There may be some delay as their office was flooded recently. They can sometimes intervene on members behalf by writing letters. see links below.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Have a look at Martyn Hooper's blog on PAS website for stories of how PAS can help.

    Other sources of b12 info

    1) See pinned posts on this forum. I found the summary fbirder compiled useful. lots of quotes from mainly UK b12 documents. link to his summary in third pinned post(last link in list).

    2) B12 deficiency Info website

    b12deficiency.info/

    3) b12d.org

    b12d.org

    4) book "Could it Be B12" by Sally Pacholok and JJ. Stuart Very comprehensive book about b12 deficiency with lots of case studies.

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

    This one is up to date with current UK guidelines. Martyn Hooper is the chair of the PAS and has wriiten other books about PA and B12 deficiency.

    I also found his book "Living with Pernicious Anaemia and B12 Deficiency"" interesting to read.

    6) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    Copies of results

    Do you have copies of the tests that confirmed your PA diagnosis as this would be proof that you have PA eg IFA (Intrinsic Factor Antibody) test.

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

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    I mention the BSH Cobalamin and Folate guidelines if writing letters about B12.

    citizensadvice.org.uk/healt...

    hdapatientcaretrust.com/

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

  • Many thanks sleepybunny,

    unfortunately my printout only states that I am positive for I.F.A and positive for P.C.A..

    My GP stated I had P.A, then told me I needed to be tested for B12 levels ( apparently he had not requested the P.C.A. test on my first bloods, the Lab had done the test off their own bat !? as they spotted something wrong )

    The second bloods showed B12 at over 300.

    Seems my tests were done back to front ?

    I have printed out treatment guidlines to show him, and will be demanding injections every other day untill symptoms get better, followed by 2 monthly top ups.

    Best wishes.

  • Link to a flowchart in the BCSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Where it says "start treatment with cobalamin" it means start b12 treatment according to BNF (british national formulary) Chapter 9 section 1.2

    Link to BNF info on B12 treatment. see under Dose section.

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

    "I have printed out treatment guidlines to show him"

    Which guidelines are you taking with you?

  • BJH guidelines for the diagnosis and treatment of cobalamin and folate disorders

  • Glad you finally have a diagnosis and can start a plan for recovery that hopefully your GP can support you in.

    Your 2nd GP unfortunately sounds like a typical ill informed doctor trained up by the drug companies' propaganda to sell more drugs.

    I agree with the other responses that you need B12 now.

    One additional recommendation I can make is start a logbook and score all your symptoms on a daily basis. Hopefully the same time every day. Try to measure the severity on a scale of your own choosing.

    As you start on B12 injections some symptoms will improve and other new ones will appear. Typically 3 to 48 hours after the injection. It can get confusing as these new symptoms are very similar to the other symptoms.

    Pain and hunger are two that are counterintuitive that appear as the repair of nerve damage increases the strength of the signal to the brain. Once you can recognize these "good" symptoms, you realize they are illusions.

    Tinnitus is one of my "marker" symptoms but even after 8 years of injections it has never gone away completely. It improves and gets worse as my B12 goes up and down and inject cyanocobalamin on a weekly basis.

    Provide a dated hard copy of all your symptoms to your GP each time you visit. Ask for it to be included in your file. Holding the "evidence" in their hand seems to make them more willing to provide more B12 when you ask.

  • Many thanks pvanderaa

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