Is 103 not low enough?

Hi I was wondering if anyone could help me please or offer advice.I was recently diagnosed with a Vitamin B12 Deficiency which was a complete surprise as I'd put my many symptons down to my underactive thyroid and and menopause. I have been tested for PA which my GP told me yesterday I am not suffering from. My problem is that even though my level is 103 all my GP said was for me to come back in 6 months to see "how I am feeling". It was only when I got upset and told him exactly how low I am feeling (at times have not wanted to be here at all) that he actually said "oh well I can try you on B12 injections but don't rely on that to lift your mood". I start these next week and I am pleased about this but I am also at a loss to undertstand his attitude. Does this mean I will have to fight this all the way? Can anybody help please?

11 Replies

  • Hi Lal,

    I am sorry you have such a difficult GP, you should give him / her a copy of the British Society for haematology's new guidelines for the diagnosis and treatment of cobalamin and folate disorders to get him/her up to date, and to make sure you get the right treatment, see:

    103 is low and well below the recommended cut of level of 148pmol/L (or 200ng/L), also with symptoms you should have been given treatment straightaway. If you test negative for IF antibodies then you are classed as IF AB negative PA, the same treatment is given as for IF AB positive PA, for life.

    Also make sure you have serum folate and ferritin tested every now and then as you can also be deficient or become deficient during treatment, which will all hinder your recovery. Getting copies of all your blood tests, past, present and future can help you see what is or not being tested and what changes over time.

    I hope you will try to learn as much as you can about PA as your GP seems hopeless and I'd not want to depend on that kind of a person for my health.

    Sorry to be so direct, its just sad to know other people may suffer like you if you do not educate this GP a bit..

    Kind regards,


  • Even though you may not have PA you may well have an absorption problem - CDC in US has site promoting awareness of B12 and that has as it's headline that 1 in 31 people (just over 3%) over 51 will be suffering from B12D. One problem that seems to occur as you get older is that acid levels in stomach change and this affects intrinsic factor and hence your ability to absorb B12. As Marre says 103 is low - so hope that giving your BP the info she has pointed you at changes

    Unfortunately the attitude you are getting is far from being uncommon - my last experience with GP was being told way I was feeling couldn't possibly be due to B12 (on injections - at 2 months) and was depression and wanted to push anti-depressants which I refused, went away, and started using a B12 nasal spray at 3x dose listed on the spray and felt so much better in just a few weeks. Now climbing up ladders whereas before I was struggling to walk - not going to claim that there isn't some depression going on as long history and work is very stressful at the moment but it is so much easier to cope with that when you haven't got the tiredness and fog of B12D hanging over you.

    SSRI's - the antidepressants of choice as they tend to be better suited can cause problems with F9 - folate - levels and actually make B12D worse ... which was part of the reason for my refusing anti-depressants though not something that I mentioned to him as the conversation felt so closed and I was feeling so stressed by the time I left.

    Please know that you are not alone in finding your GP difficult and feeling that you aren't being listened to.

    Please also be aware that, given that you know B12 is a problem and that you probably also have an absorption problem - that there may be other options you can explore for yourself. But, please also bear in mind that B12D symptoms also have an overlap with other conditions so is good to get periodically checked for things like thyroid.

    Your GP really should be treating you if your B12 is as low as indicated - it is a serious condition so it is baffling that GPs seem to know so little about it - given stats on CDC site. If you don't have any luck from showing the info Marre has suggested to your GP you could try asking to see another GP (assuming that you are at a group practice) and you also have the option to complain about the way you are treating - but totally understand if you feel that that is all too much.

    This is link to the CDC site

  • The health service is a joke. It took them 15 years to finally aggree that I have pernicious anemia and only then when my hb levels dropped to 4.1. I haven't been able to have an injection for 3 years and my current gp is more than happy for me to go without them even if it kills me.

  • You should have been started on loading doses 6 in 2 weeks and then one every 3 months it's very low your level of 103.your doctor is in the wrong

  • I've had similar reactions from my primary care providers. She acts as if I'm exaggerating or hysterical, and I feel extremely disrespected. Since I rely on the VA for my healthcare for the time being, there's not much else I can do except realize that's how she is, she's not likely to change, be happy that she's (finally!) performing the necessary tests so I can get the proper treatment. It's been quite a fight. If you have a choice, maybe you could find a provider who is more respectful? Who is more knowledgeable about your disorder? Some are more knowledgeable and supportive than others and it may be to your benefit to find another doctor, for the sake of your mental and physical well-being. It's hard enough to fight PA without having to fight the doctors, too. Just my $0.02.

  • Hi, thank you all so much for your replies and advice. I have a lot to read and digest before I take things further at my doctors but you have all given me the confidence to do so. I do have a further question though that has occured to me after reading more about PA. Was I supposed to fast before my blood tests? And would it make a difference to my results does anyone know please? I was not told to do this.

    Thank you x

  • I do not fast before serum B12 test. I had a blood test once first thing AM testing serum B12 and then had another one 3 hours later with a sandwich eaten by then, and no, no difference at all in my serum B12 levels. Other results in the full blood count were slightly different. Daughter was not advised to fast for the active B12 test either. Marre.

  • Thanks Marre you are a fountain of knowledge. It's so scary being to ignorant about it all and although a good help at times the internet can frighten you. I was diagonised with a heart murmur a few years ago (in my 30s) now find this can be sympton of low B12. Makes me wonder how long I have been deficient.

  • Oh best to say with everything you read it applies to some but not all, and I'm sure you will find quickly that what one person thinks/ feels can be so different from the other that nothing will always also apply to you. We all are so different! I have a heart murmur, was born with not think I was B12 def as a child ever, as I have none of the development delay stuff associated with B12 def in kids, and just healthy and active, but I regularly was anaemic, which was the cause of hearing my heart murmur. I was regularly put on iron tabs/ syrup. Mine is an innocent flow murmur, just a small leak, supposed to have closed up when grown up, but that did not happen. Its there, but does not bother me, only think it may be the reason why being anaemic can affect me so much more than the blood test would imply. Finding it hard to get up stairs etc well before blood test implies a def. So a heart murmur is not specifically only associated with B12 def, its often there, but only heard when you are anaemic (it being caused by B12/ folate and or iron def) because your blood cells do not contain enough 02 when anaemic and then your brain requests more blood supply which results in your heart pumping more than "normal" to address the 02 shortage say. Then there are different heart murmers for different reasons and with different problems. I hope this makes sense! Marre.

  • That makes perfect sense. It's all so complex and makes me madder still my GP hasn't even asked me the most basic questions. It was just blood test, result over telephone by "phone appointment" further tests quick appointment and would have been sent away for 6 months if he'd had his way!

    There's still so many questions I have. I start my injections today for 2 weeks and think I will ask to see a different doctor after those. I feel frustrated that they are not even looking into why I am deficient given that they say I am not sufferring from PA. I eat a normal healthy diet, try my very best to eat my 5 portions each day. I was diagnosed with Raynaud's Phenomenom a few years ago and put my cold hands and feet down to that my GP recently prescribed medication for this but now I'm thinking this is down to my deficiency.

    Can I just ask something else please, is it also normal to have stomach gurgles etc? My stomach constantly grumbles it's so embarrassing.

    Sorry for going on and on I am just a bit overwhelmed by it all!!

  • Ask as much as you need to, we can but try to answer! Stomach problems are often PA/B12 def related as in if you for instance do not have enough stomach acid then digestion could be poor, but to be honest there are so many reasons for that. Still many with PA/B12 def have stomach/ digestion problems, often put down to IBS, not always the case. Even the B12 treatment can give you a runny tummy.

    The reasons for being B12 def can be very obscure indeed and also a combination of problems, some tests are easy, but most not that simple nor cheap and the treatment is the same, no matter the cause, so it is because of that , that more investigations are not often done as to why. There is still a lot unknown about B12 def and why it occurs, new genes found regularly, new enzymes needed in metabolism etc.

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