High b12, low iron (both), enlarged RBC

Hi - my B12 serum levels are high because I was supplementing both orally and had injections (Hydroxy) whilst on holiday in Australia. I think that I have always suffered from low B12 and just self medicated with injections - in South Africa it was easy to go to a pharmacy or Doctors rooms and ask for a B12 plus B complex jab whoever I felt really low, very stressed, anxious, depressed or very tired. I have a cracked tongue (from my teenage years) and it is always a bit sore. Since living in the UK my symptoms have got so much worse. I also have muscle weakness - a duvet and blanket feel too heavy to lift off me. I am also having trouble walking although not sure if it's related - because I do have dodgy knees and ankles anyway but my muscles, knees and hips are so sore it's hard to get up out of bed or a chair - I feel like my bones are bending when I stand. I am a big person and have always been considered as the strong one - now I am having to ask people to do things for me - can't work at present so that is stressing me as well. Does anyone think this could be related or should I look at a different angle?

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  • If you have had your B12 topped up by injections then having high levels isn't surprising and it doesn't mean that you don't have an underlying B12 deficiency that hasn't been addressed. The serum B12 test is a poor guide in the best of circumstances but is no guide at all if supplementation has occurred as what matters is what is going on at the cell level.

    It is possible to have little B12 available at cell level though there is a lot floating around in your blood - this is called a functional B12 deficiency. This is because some people respond to high levels of B12 in their blood by shutting down the transport mechanism. There isn't much literature on treating this but the most successful tactic seems to be flooding the blood with so much B12 that enough manages to get through.

    Your best bet is probably to ask for an MMA test - levels will be raised if there isn't enough B12 getting through to your cells - which could help to clarify. large blood cells is a sign of macrocytosis which is a classic symptom of a B12 deficiency - and that is doubly so if you also have an iron deficiency which would tend to make your B12 levels lower.

    Homocysteine is another test that looks at a different waste product that builds up if your body doesn't have enough B12 and folate available at the cell level but it isn't commonly done in the UK on the NHS.

    Very much hope that you can get your GP to listen and investigate - particularly given the history of treatment in South Africa. If you are finding getting your GP to listen then I would recommend actually joining the PA proper and contacting them for support.

    pernicious-anaemia-society....

  • Thank you so much Gambit62 for your response. I bought the talks from the PA conference but am not sure if that was the same as joining them. I forgot to add that I also have Hypothyroidism and Psoriasis. I just feel like giving up am so so tired of being in pain, feeling awful and constantly weepy. The medical system is so different here - it's hard to get my head around. I think where I gone from and because one mostly pays to see a clinician of any form - they are more likely to listen to you, do tests and book follow up appointments or refer one to a specialist. I took out private medical insurance but not even sure how to use it as it seems one gas to first go through ones NHS dr. to be referred. Feels like everything is in the too hard basked for me right now. Sorry to be such a whinger!

  • I could not get the help I needed from the NHS so I found a private GP who referred me to a private neurologist.

    Perhaps your insurance would cover this if you need to.

    I found the private GP very helpful and still see him for B12 Deficiency treatment.

  • Thanks - will seriously consider that if I do not get a favourable response from my dr this week.,

  • buying the talks won't have made you a member - the link in the post takes you to the page where you can apply for membership - it takes you through the different levels of membership and what they mean. You need to go down to the bottom of the page and hit the 'join now' button on the level you have selected.

    Did the blood tests you had done show anything up about thyroid? and do you know what your folate levels were like.

    I can remember how difficult it was to think straight and sort things out when my B12 was really bad and that was with a health system that I was used to. There should be a support line for your health insurance that you could ring to find out how exactly to get it to kick in to support you. If you explain to them that you have some medical problems and are currently suffering with anxiety and pain so you need them to take their time and explain things carefully and you may need to ask them to repeat themselves before they start then that should help - make them deliver the information you need at the rate that is right for you. If they seem incapable of doing that then ask them to put you through to their supervisor.

    The NHS can be quite daunting and receptionists often regard it as being part of their job to keep patients away from doctors. If that is part of what is going on for you then it might be helpful to arrange an appointment with CAB (citizen's advice bureau) and ask them if they can take you through things - at least they should be able to explain where you need to go and how best to navigate things.

    Hope you can manage to break things down into smaller manageable chunks so you can do them at your own pace ... and don't feel that you are whinging. Almost everyone here that is based in the UK has had to battle with the NHS at some point.

  • Thanks Gambit62 for your concern. I will take your advice and ring medical insurance and ask for assistance / explanations. Thyroid came out a bit low / need to up meds again.

  • Thank you so much for your advice.

  • I know how difficult it is to fight for appropriate treatment when you feel so awful and you can't seem to think straight. Once I had the initial loading doses of B12 from my GP I found that I was much better placed (physically & mentally) to take control of my health. This forum and Martyn Hooper's book, (what you need to know about pernicious anaemia & vitamin B12 deficiency) helped immensely. I wish you well.

  • Thank you for your support HonorElizabeth.

  • Have you had your vitamin D tested? If not, it might be worth checking. Mine were very low (I have hashi's) & I had no idea until saw blood test results.

  • Thanks Xanthi - yes Vit D a bit low and I am supplementing.

  • So update: saw doc today and these are my blood test results. Now sending me for amother FBC and Differential?? Ferritin Iron Studies and an HFE gene mutation test for Haemochromatisis.

    My blood tests results from a couple of weeks ago:

    As per my previous post I have always self medicated with BCo together with B12 injections in SOuth Africa. Whilst in UK last two tears have not been able to do this. Have used sublingual a and patches occasionally. Recently (month ago) had 3 x Hydroxy injections whilst in Australia. These are my latest blood tests done on 7th December 2016.

    IF antibodies - Normal

    Parietal Cell Antibodies - Normal

    B12 = >2000 ng/L (200 - 910ng/L) was supplementing - orally and injections.

    Serum Folate = 16.2 (3.00 - 20.00ug/L)

    TSH = 7.45 (0.35 - 5.00mu/L)

    Free Serum T4 = 15.9 (9.00 - 22.00pmo/L)

    Raised thyroid serum antibodies

    Vit D = 78 (50 - 200nmo/L - within range ????

    Serum Ferritin = 187 (10 - 200ug/L - on high end but in range

    Serum Transferrin = 2.6 (2.20 - 3.40g/L) - seems normal

    Transferrin Saturation index = 15% (17 - 57%) - low

    Serum urate = 372 (140 - 360 umol/L) - raised

    Serum Iron Level = 9.7 (10 - 30 I umol/L) - slightly low

    Serum potassium = 5.3 (3.50 - 5.30mmol/L) - borderline

    Red Blood Cell count = 5.9 (3.80 - 5.00 10*12/L) - raised

    Haemaglobin = 153 (115 - 145g/L) - raised

    Haematocrit = 0.463 (0.36 - 0.46 L/L - raised

    Platelet count = 403 (150 - 400 10*9/L) - raised

    Hope someone can shed some light.

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