Confused

I have symptoms of tremor brethlessness brain fog alopecia and my sister has a confirmed diagnosis of PA, but my b12 is 201 now it was 528 in April last year I also have pantocypinia which is low red, white blood cells and platelets and long term coeliac that took a long time to diagnose. I was recently checked for PA but was already on folic acid so no large red cell's where found so they said I didn't have it I have been informed you can have a false negative test when on folic acid.

I also had a bone marrow biopsy done it was inconclusive and they said they did not find the reason for the pantocypinia stating it may be due to the meds I'm on however all these problems predate the meds by more than 2 years should I ask for a second opinion can you have symptoms like that with results I have now by the way my b12 was lower in the past below 180.

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  • You say you were checked for PA, but it sounds like you were checked for MA.

    Macrocytic Anaemia (large red blood cells) is a symptom of PA, but it is not a necessary component. It's very common for PA sufferers to show no signs of MA. - frankhollis.com/temp/Summar...

    To test for PA one needs to look for signs of Autoimmune Gastric Atrophy. This can be confirmed by testing for anti-IF (Intrinsic Factor) antibodies and by histological examination of biopsy samples taken during a gastroscopy. The presence of anti-GPC (Gastric Parietal Cell) antibodies is also a good indication of PA, but there are other causes.

    The problem with the anti-IF test is that it's only positive in 50% of PA sufferers (see my summary above).

    Sorry, but I know nothing about pantocypinia.

  • It's all very confusing I have spoken to a locum gp today he has a arranged a lot of blood tests including the anti if test hope it helps clarify the situation will be a miracle if it dose pantocypinia is a syptom rather than a condition that presents as low. Red White blood cells and reduced platelet count unfortunately the haematologist did not find the cause said it may be auto immune thaks for your reply 

  • Sorry that you are struggling with general medical ignorance but it's not an unusual situation to find yourself in and you will find plenty of support and suggestions here.

    PA is one possible absorption problem that can lead to a B12 deficiency.  There are others and the symptoms will be the same whatever the cause of the problem - other problems include lowering stomach acid as you get older, gastric surgery affecting the ileum, genetic abnormalities affecting the ileum, and various drug interaction - ironically many of which are drugs used to treat early symptoms of B12 deficiency

    The test for PA are generally looking for antibodies - IFA and PCA that attack the mechanisms that are used in the ileum to absorb B12.  Neither test is particularly accurate.  

    Generally PA is associated with macrocytosis, but that is just a symptom of the B12 deficiency that PA causes ... and isn't necessarily the first symptom to occur - about 30% of people develop neurological problems before macrocytosis develops.

    Unfortunately the B12 serum test is not a good guide as to whether you are B12 deficient.  It is based on averages in the population.  B12 is something where there is a lot of variation and significant numbers of people show strong clinical signs of B12 deficiency well into the normal range.  The BCSH recommendation is to treat on the basis of symptoms not blood test results and UKNEQAS (the body that does quality assuranace on tests) have an alert out warning that B12D should be treated on the basis of symptoms not test results

    bcshguidelines.com/document...

    refer to p2 summary and treatment regime on p8

    ukneqas-haematinics.org.uk/...

    Your results are well into the grey range where people are deficient but bloods come back as normal range, so more than possible - particularly given family history - that you are B12 deficient.

    Ignorance of the limits of the tests is one obstacle.  Ignorance of the range of symptoms is another.  Would suggest that you go through this list and tick off everything that is relevant.

    pernicious-anaemia-society....

    You might also find it useful to point your GP at this micro-site

    pernicious-anaemia-society....

    It may be that the meds are not helping the situation as there are many drugs that will interfere with your ability to absorb B12 and so make a bad situation worse.

    Another factor to bear in mind is that losing your ability to absorb B12 also means you lose your ability to store and recycle B12.  Generally the body is very efficient storing B12 in the liver and then releasing it in bile into the ileum for reabsorption - so the body generally doesn't need much but if you have an absorption problem then you also have a storage problem - leaky bucket and things tend to snow ball as the absorption problem gets worse.

  • Thank you this information is extremely helpful I will digest and speak to the GP however I'm at the sugery now I have had a gastric bypass as well 

  • Thank said there is definitely a problem he has arranged a load of f blood test and wants to see me for review following them I feel he listed to what I had to say and your information helped me to put my case forward once again thank you 

     

  • Glad the appointment went well and hope you are able to work with the same GP going forward.

  • Note: just looked at the BCSH guidelines in relation to folate deficiency and they mention

    Severe folate deficiency can cause pancytopenia and megaloblastic anaemia.

    so, was right that you were being treated for folate deficiency.

  • Interesting you have been so helpful but it's like a minefield of information why are gp so reluctant to respond to information I had to take my blood results and point out the paternity you would have thought they whole have seen this themselves I think they only look for symptoms of one thing then if that is inconclusive they send you away they have been treating the breathlessness as asthma but as not all of there indicators where correct they sent me away even thought I had informed them re the bloods it is very frustrating I  have learned more from you thank you 

  • It is frustrating that GPs are so unaware of B12 deficiency - think that vitamins are only skirted over in the syllabus they cover.  However, there are a lot of conditions out there ... and no real way that one person could hold everything in their head.  What is more difficult to understand is the arrogance that people often come across with possibilities just been dismissed as not relevant - very common with B12 because it is just a vitamin, or it's a blood disorder or just macrocytosis - or some other myth.

    I think it is unfortunate that the way the world works this days has become so much about check-boxes with very little thinking outside the box.

  • Hi Jackie

    Your B12 levels were extremely low at 180 and, with coeliac disease,  gastric band surgery, and  PA already in the family, you are in at least three high risk groups for PA/ B12 deficiency.  These indications, together with the neurological symptoms you are already experiencing, mean you should be treated urgently with B12 injections to avoid irreversible damage.

    Here are the BCSH guidelines that your GP should be following:

    onlinelibrary.wiley.com/sto...

    See bottom of page 10 under, "Poor absorption due to gastrointestinal surgery or diseases" :

    "Patients who have had gastric surgery have a high prevalence of cobalamin deficiency............gastric banding and gastric bypass surgery have also led to cobalamin deficiency".

    I would write or email this to the surgery (the B12 def. site in the info on FBirder's list of sites has templates for writing and an excellent film that highlights the dangers of high folic acid masking B12 deficiency).

    If you get nowhere with this, many people on the site self inject. I wish that we had started self injections for my relative earlier rather than battling with her surgery, as she is now very ill with irreversible damage after years of misdiagnoses and undertreatment.

  • Thank you I will do this I have also discovered I had low B12 at 161 prior to the gastric bypass oparation in 2009 that was not treated it all seams to be falling into place now thank you for you advice I will not let this rest now 

  • Latest BMJ research document with useful summary and more info re gastric band surgery - page 5 under 'Box 3 - management of B12...."

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

    b12deficiency.info/b12-writ...

    The link for BCSH as previous one doesn't work

    bcshguidelines.com/4_HAEMAT...

    Sorry if this confused you Jackie - had to edit the above as got it mixed up with the BCSH guidelines! 

  • Thank you 

  • Hi,

    It may be helpful to talk to PAS (pernicious anaemia society)

    pernicious-anaemia-society....

    01656 769 717

    Office open from 8am till 2pm every day except Sundays. Lifetime membership costs £20.

    Useful books about B12

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

    Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

    Martyn Hooper is the chair of the PAS. he has written several books about PA/B12 deficiency.

    martynhooper.com/

    Articles about Pantocytopenia and B12 deficiency

    patient.info/doctor/pernici...

    This link mentions that severe b12 deficiency may lead to pantocytopenia. See Investigations section.

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pubmed/182...

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

    Other useful links

    b12d.org/

    patient.info/doctor/macrocy...

    patient.info/doctor/full-bl...

    "checked for PA but was already on folic acid so no large red cell's where found so they said I didn't have it"

    The following link has info I found interesting in Management section.

    patient.info/doctor/folate-...

    I have read that treating megablastic anaemia(macrocytic anaemia belongs to this group) with folic acid can cause problems if a co-existing b12 deficiency is not treated.

    Gambit mentions the "BCSH Cobalamin and Folate guidelines". I gave a copy to my GPs and a copy of Martyn Hooper's latest book. I found page 29, a diagnosis flowchart in the BCSH Cobalamin Guidelines useful. I belive the BCSH Cobalamin and Folate guidelines make it clear that some patients with B12 deficiency do not show macrocytosis (enlarged red blood cells) see pages 4 and 6.

    Recent documents make it clear that patients who are symptomatic fro B12 deficiency should be treated even if B12 levels are normal range to avoid neurological damage.

    Gambit mentions the UK neqas B12 alert and the BCSH Cobalamin Guidelines . A recent BMJ article has a useful list of summary points. I gave a copy of this to my GPs.

    bmj.com/content/349/bmj.g5226

    B12 Deficiency Symptoms lists

    b12deficiency.info/signs-an...

    pernicious-anaemia-society....

    See Symptoms Checklist in library. I gave a copy of this to my GPs with all my symptoms ticked.

    Second Opinions

    "should I ask for a second opinion"

    If you have no joy with GPs then this UK charity offers free second opinions on medical treatment and diagnosis. I believe a full medical history may need to be supplied, They are usually very quick to respond.

    If i had accepted what doctors first said to me I believe I would by now have lost feeling in my limbs and would be showing early signs of dementia. My experience is that great persistence is needed as PA and B12 deficiency is not always fully understood by some. I have been ill for many years and it was only my persistence over many years that has finally made the doctors acknowledge the possibility of B12 deficiency causing my problems.

    HDA Patient Care Trust

    hdapatientcaretrust.com/

    020 7935 8366

    HDA Online Contact form

    hdapatientcaretrust.com/con...

  • Thank you this very helpful 

  • Hi Jackie

    I was looking for something else just now and came across this letter in 'Rapid Responses' to the BMJ research document from Erlend T Aasheim, MD, Norway, and thought you might find it useful:

    bmj.com/content/349/bmj.g52...

    Many links to research at the end for your GP if needed!

  • Thank you for this information I have been reviewing my blood reports and prior to the gastric bypass opp I had in 2010 in April 2009 my B12 was 161 and four years prior to that I hade been treated for anima prior to a pulmonary embolism also I was a premium baby at birth and that can be a contributory factor I belive it's no wonder I have symptoms I feel like a hypochondriac lol

  • It's so sad and frustrating that people have to suffer for so long, even with very low B12 and all the high risk factors that you have, when the information and research is out there and has been for many years.  

    I really hope your GP will listen. Good luck Jackie.

  • Thanks for that Polaris. Very interesting. It also confirms my opinion that some doctors have no ability to do simple maths (like calculating the amount of cyanide released from 1mg of cyanocobalamin).

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