B12 defficency?

In April 2015 I was diagnosed with iron defficent anaemia haemoglobin was about 63 and ferritin 1. I received a blood transfusion and felt so much worse. I have had leg aches, fatigue,headaches ever since and short of breath. But over the past 5 months I've been getting steadily worse.

I am now feeling shakey, cannot think straight, have memory loss, dizziness, ridges on my nails, shooting pains in my arms and legs, RLS and am now really struggling with even getting out of bed. It feels like ive got a hangover every day.I've been seeing a haemotoligest and neurologist and they both say everything is fine? My Haemoglobin is now 167 and ferritin 29 and the Dr's say I am now not anaemic.

After discovering this website and checking my symptoms with b12 defficency I checked back at my blood results. The only b12 test result that I can see was taken before my transfusion and the serum b12 was 191 which I recently pointed out to my gp. My gp states that it was within in range so there was no need to retest. This b12 test was 10 months ago and the gp said they could retest but I can't get a blood test carried out for another 10 days. I am really concerned as the last test was 10 months ago and after reading up about b12, I am worried about any long term damage. Any help would be appreciated.

17 Replies

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  • Having had a blood transfusion is certainly going to have confused matters.

    191 is on the very low side and although some people can still have enough B12 at this level a lot don't. There is a huge amount of variation in the way that people metabolise B12 which means that going by the test results for serum B12 is not the right thing to do. Also serum B12 looks at all the B12 in your blood and not just at the active form that is used at the cell level ... and that last phrase 'at the cell level' is the real killer when it comes to the idea that serum B12 might be a good guide as it tells you about what is happening in blood,not what is actually going on at the level of the cells where the B12 is being used.

    I'd suggest drawing your GPs attention to the following

    ukneqas-haematinics.org.uk/...

    alert warning that clinical symptoms take precedence in interpreting the blood test results

    bcshguidelines.com/document...

    guidelines produced by the BCSH - especially the summary about significant numbers of people being symptomatic within the normal range and also the treatment protocols on p8 - which are different if you have neurological involvement and you obviously do from the symptoms you have prescribed.

    If you haven't done so already I would suggest that you print out the PAS checklist and tick everything that is relevant on that and take that with you as well.

    This page on the PAS website may be of use as it is geared towards medical practitioners

    pernicious-anaemia-society....

    Anxiety is another symptom of a B12 deficiency so worth bearing in mind as it may be a big factor in how worried you are feeling.

    B12 is a serious condition and your symptoms certainly seem to be snowballing but that doesn't mean that it is too late. We talk about a 6 month window for some problems but it's difficult to describe exactly when that starts and things can be quite suprising. I had problems with depression and anxiety for 40+ years and that has gone. I still have a degree of carpel and tarsal tunnel - had to use an arch support for 10+ years and in general can get away without it now. Big eye opener for me just recently was discovering that adenosyl B12 touched one set of symptoms I thought were there for ever - my bladder and bowel control. There are a lot of possibilities with B12 so a lot of hope.

    If you really can't get your GP to listen then there is the possibility of treating yourself. It is only injectable B12 that tends to be controlled by prescription regulations - other forms of delivery are not controlled. You can get high dose sublingual tablets and sublingual sprays, nasal sprays and skin patches and some people find these very effective. They also give you the option to try a bigger range of types of B12 than you would get from your GP giving you injections- which tends to be either cyano (US) or hydroxo (Europe). They don't always work for people and if they don't then there is the option of sourcing injectable B12 from outside your home country (there is generally legislation in place on humanitarian grounds that means you aren't breaking the law by doing this) and injecting yourself ... though important that you get some advise on how to inject - particularly if going for intra-muscular rather than subQ

  • Hi gambit62, you made mention in this reply about bladder bowel control on adenosyl what is that? Could you please PM me to explain further. Thanks pix

  • different forms of B12 are:

    cyanocobalamin

    hydroxocobalamin

    methylcobalamin

    adenosylcobalamin - sometimes known as dibencozide

    cyano is the most stable, adenosyl the least.

    methyl and adenosyl are both methylated forms of B12 so closest to the formats used at the cell level

  • What does that have to do with bladder bowel control.

  • One of the symptoms of B12 deficiency is lack of bladder and bowel control - in particular urgent uncontrollable urges to go. Taking adenosyl B12 has certainly improved that for me

  • I would try to get them to expedite the B12 blood test, even if it means you have to go to a hospital and wait around for a few hours.

    However, don't be tempted to start supplements now as they will totally screw up the results of the test, and you'll never manage to persuade your GP that there is a problem. I know it sounds hard, but trying to tough it out for another 10 days really would be the best choice.

  • Hi,

    I've assumed you're in the UK.

    I found this article helpful besides the ones Gambut mentioned.

    bmj.com/content/349/bmj.g5226

    There is a list of summary points. The 5th summary point makes it clear that symptomatic patients should be treated to avoid neurological damage .

    I gave my GP a copy of Martyn Hooper's latest book

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

    Its up to date with the recent "BCSH CObalamin and Folate Guidelines"

    In the BCSH CObalamin and Folate guidelines, I found page 29, a diagnosis and treatment flowchart useful as it summarised the recommended procedure to diagnose B12 deficiency.

    "Could it Be B12" by Sally Pacholok and JJ. Stuart is another book I found helpful. Its very comprehensive.

    Martyn Hooper is the chair of the PAS. Some people find it helpful to contact/join the PAS.

    pernicious-anaemia-society....

    01656 769 717

    martynhooper.com/

    Other B12 websites

    b12deficiency.info/

    b12d.org/

    Link about B12 blood tests

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    Do you have copies of a full blood count(FBC) test? There can be useful clues on this.

    High MCV and High MCH can indicate the possibility of macrocytosis.Macrocytosis is sometimes found in people with B12 deficiency and/or folate deficiency. Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). Low iron can lead to smaller red blood cells (microcytosis). A person with both low iron and low B12 and/or low folate may have a "normal" MCV . A blood film aka blood smear may show up both macrocytic cells and microcytic cells in someone with both conditions.

    patient.info/doctor/macrocy...

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

    patient.info/doctor/pernici...

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

    One thing I have found is that GPs may be folllowing local guidelines for their NHS area on the Management of B12 deficiency. Some of these local guidelines have not been updated since the BCSH Cobalamin Guidelines came out in 2014.

  • Extract from 'Could it be B12? :

    "Macrocytic" or "megoblastic" anaemia, in which the red blood cells are enlarged, stems from too little B12 or folic acid. In addition, doctors who treat severely anaemic patients, give blood transfusions BEFORE ordering sensitive tests to rule out underlying B12 deficiency. When doctors order these tests later, the healthy donor blood may mask the abnormalities in the patients blood or make serum B12 levels appear normal."

    "Your doctor can't determine if you're deficient or not simply by ordering a blood count or smear (a test for anaemia, enlarged red blood cells and abnormal white blood cells (neutrophils) seen in some clear cut cases of B12 deficiency"!

    Your B12 at 191 before the transfusion caynsley was low and, together with anaemia and your neurological symptoms, means that it is vital you are treated for the cause and not only transfusions.

    It doesn't look as though your GP knows enough about B12 def, to treat you with adequate B12 and, personally, I would either ask to be referred to another specialist urgently or start self injectIng.

  • I think that your ferritin still seems very low - do you have the lab ranges? Low ferritin will be giving you some of the symptoms you have listed. Muscle aches, tiredness etc.

    Did they test for D3 too? This might also be impacting on you.Maybe consider taking iron supplements to raise the Ferritin. It should be taken along with Vit C to help absorption.

    Have they considered why you are not absorbing vitamins and minerals e.g. have they tested for issues like coeliac. Low iron and low ferritin can be a sign of gut problems.

  • Yes I'm taking ferrous sulphate with fresh orange.Lab range was 150-1000 via nhs.

    They have tested for coeliac and I've had Colonoscopy and Gastroscopy but nothing found. What is D3?

  • Hopefully the Ferritin will start to improve then :) If the lab range is so wide you possibly should be aiming to get it up to halfway. Symptoms of low ferritin only improve a few weeks after the numbers get to a decent level.

    Thats good that they have tested for Coeliac :)

    D3 is the sunshine vitamin and if you are low it can give aches and pains and low mood. There are studies that say many of us a low in D3 due to being advised to cover up from the sun and to wear sunscreen

    Have a look at this website for more details vitamindcouncil.org/about-v...

  • Sorry I gave you b12 lab ranges of 150-1000.

    Ferritin lab range is 12-250.

  • Oops :) I thought it seemed like a massive range. On that range you might start to feel better when it is at least 70 to 90. 80 was when my hair loss and muscle weakness started to improve

  • Seen a locum last week and told him all of my symptoms and he arranged to recheck everything. Just been back to GP and only just been told that 250H Vitamin D is low at 27!

    Only been describing my symptoms for 11 months and don't think they had ever checked. Also told Serum Vitamin B12 is 228 which according to him is acceptable and Serum Ferritin is 35 which again he says is acceptable and we'll within range. Yet I'm still short of breath, have aching legs, Fatigue, RLS, no energy, ridges on nails etc etc.

    He just told me to get more sun and eat oily fish and that was that. I even asked why I had all of these symptoms and was told that he didn't know!

    What are these people paid for and what did they practice??

  • I hear your frustration - and agree that they really should understand the ranges better.

    I would consider taking a supplement for D3 as if it is too low it will affect your bone density. I suspect that sun in March and oily fish will not be sufficient to raise your levels quickly enough. I would also be concerned about the low ferritin reading and ask for it to be tested again in a few months to see if it had improved after the iron tablets. I think the D3 and ferritin levels are giving you lots of your symptoms.

    Are you taking any stomach meds such as PPI's for stomach acid/reflux etc - I have read that these can inhibit absorption. And apparently they lower stomach acid when usually the problem is that it is too low for many people.

    I don't know enough about B12 to comment.

    Good luck getting the levels up and keep pushing for your health :)

  • 228 is not acceptable, as, "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." and, in any case, this test is unreliable. The neurological symptoms you already have should be treated without delay with injections to avoid permanent permanent and irreversible damage. 

    BCSH, NICE and UKNEQAS all have guidelines on treating B12 def. and you could write or email the latest BMJ research document to the surgery. This is given below and gives up to date guidance on treatment.  

    This helpful site has templates and advice on writing to your doctor:

      b12deficiency.info/signs-an...

    This is the latest BMJ research document (sleepy bunny gave the summary above) 

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

    It might be worth taking someone with you next time, together with the summary (in case they have not read the complete document), to underline the seriousness of delaying treatment.

  • Just to add - on the rare occasions that I have a decent HB but low ferritin, it usually results in a subsequent fall in my HB as there is insufficient ferritin to draw on.  The same applies when ferritin level is good but HB is low - HB will rise but at the expense of ferritin.

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