Doctor has confused me. Please help!

I have just started self-injecting my B12 loading Injections as I have all the strong symptoms of a B12 deficiency. My B12 blood result is 209.

However now a different doctor has said to me I'm wasting my time and this can't be what is causing the symptoms. He says if this was the problem something would show abnormal on my full blood count (I think he might have mentioned either on my haemoglobin or mean corpuscular volume). He said as they show normal it can't be low B12 causing my symptoms.

Can someone please tell me if this is definitely correct? Thank you!

12 Replies

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  • Take no notice. A b12 of 209 is very low and blood tests are unreliable to diagnose on their own. I wish doctors would increase the ranges! I also wish they would treat the symptoms instead of blood tests. If you start feeling better injecting then I would stick with it. Have you shown him the guidelines from the British committee on standards in haematology? He should have read them, but it says doctors should treat clinical symptoms and not rely on blood tests. It also says how unreliable tests are including the b12 test. I've not got the link to hand but if you go on the BCSH site and find the b12 and folate guidelines you could give him a copy and it might sway him. You never know!

    Other members are more knowledgeable and will give you more specific advice and linjs.

    I had tge same problem with my GP and started self injecting 5 weeks ago and it is like someone has plugged me back in! I'm still at a low wattage but hope to get higher with time. Two weeks ago I discovered my b12 was 169 in 2003. I have been struggling and complaining of the usual symptoms of low b12 for at leasr 15 years. They didn't tell me! If I didn't take control myself now, I don't know what would have happened. I'm angry they left me for so long that I probably have some permanent damage. Don't let that happen to you. I hope your doctor changes his mind after reading the guidelines, but if not, carry on self injecting whenever you feel the need. You have to look after yourself. Good luck. :-)

  • Your doctor is confusing you because he is confused.

    B12 deficiency is not a blood disorder - a blood disorder - eg macrocytosis - which is what he is talking about - is a potential symptom of a b12 deficiency. It is not necessarily the first symptom to occur. I can trace back problems caused by B12 deficiency for 40+ years but I have never had any anaemia. Unfortunately your GP is far from alone in being confused.

    Macrocytosis is not caused directly by the amount of B12 in your blood - it is caused by lack of B12 available to the cells in your bone marrow which regulate the production of red blood cells - meaning that the red blood cells do not grow properly and are larger and rounder than they should be - making them less efficient at carrying oxygen.

    Whilst this may cause some of the other symptoms of a B12 deficiency it does not cause all of them - in particular it does not cause the neuropsychiatric or neurological symptoms. To add to the confusion, because the neurological effects affect the autonomic system which controls various things we do subconsciously - like breathing - there can be an overlap in symptoms caused by neurological damage and those that result from anaemia.

  • l am the same as LtAngua52 and have had symptoms for 15 years before finding out my b12 was 140 it says on many websites that you can be b12 deficient or have pa without macrocytic anaemia in fact many of us have iron deficiency anaemia which can mask this

  • Show him page 2 of my summary document - frankhollis.com/temp/Summar...

    The British Committee on Standards in Haematology (the biggest brains in blood in Britain), the National Institute of health and Clinical Excellence (the people who are supposed to be able to tell doctors what they should be doing - and how) and the British Medical Journal (out most prestigious medical publication) all say that PA doesn't necessarily mean the patient has any blood disorder.

  • Hi,

    I gave a copy of Martyn Hooper's latest book to my GPs. It is up to date with the latest guidelines.

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

    I also found the following book useful, very comprehensive

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

    Sally Pacholok is one of the speakers at this UK conference being held soon.

    b12deficiency.info/conferen...

    Have you been tested for PA(Pernicious Anaemia)? The PAS (Pernicious Anaemia Society) are helpful and sympathetic. Lifetime membership costs £20.

    pernicious-anaemia-society.... 01656 769 717

    Other UK B12 websites

    b12deficiency.info/

    b12d.org

    martynhooper.com/

  • Just a late thought briskate do you know what your folate (B9) level is?

    It's important that this is good as it works "hand in hand" with the B12 you are injecting

  • Thank you everyone for your replies. I will continue to take the injections even though this one doctor thinks I'm wasting my time (my B12 is 209). He thinks the symptoms are caused by something else that we haven't found yet.

    I did my 3rd injection last night - still very tired with strange vision. I hope this is normal as I haven't yet noticed a massive improvement.

    My folate is 12.1 (range 4.60-18.70). Well it was when I was last tested for it in October 2015 - it might have changed by now. I'm also taking Vitamin b-complex and iron supplements.

    I read somewhere I shouldn't have vitamin C at same time as B12 - is this correct?

    Is there an actual test I can ask my doctor for? (apart from a full blood count and a serum B12 test which I've already had). That way at least I could be sure that this is the problem instead of just doing the injections and hoping they work.

    Thanks!

  • Hi there are more knowledgeable people than me but I'm pretty sure that if your doctor is looking for macrocytosis as evidence of anaemia yet your levels are in range (albeit probably low in the range) it could be that if your ferritin (stored iron) is low as well as b12 and folate it has the effect of reducing the MCV when just b12 and folate deficiencies would normally increase it, thereby giving a 'false normal' MCV if that makes sense? Please correct me if I'm wrong anyone.

  • It took me quite a long time to feel better on injections, my B12 was 176 when I was diagnosed, and I had lots of symptoms. Air hunger was one of the worst, I found myself taking huge sighs to try and get oxygen into my lungs. I had bad numbness in my feet and legs, my vision was blurry, I found having a coherent conversation difficult. I struggled for the right word, or someone's name. I slept all night and a lot of the day too. Have a look at the Pernicious Anaemia Society website for more information. There is a full symptom list on there, plus they can provide information for GP's.

  • Did you do your first SI yourself or was it done by a medical professional?

  • Please see my reply to your other post.

    It's not good netiquette to post the same question in different threads

  • Sorry about that, I was on my phone and did not think my question had registered as I could not see it.

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