Perplexed

Does anyone have any idea why Doctors won't treat you with B12 injections .. When my B12 is 248 .. Mean cell volume 98 on top side of scale .. Anti Paratiel cells positive .. Family history of pernicious anemia .. Many clinical symptoms for many years .. Also my Eosonphils was 5 when its 0/3 range .. Mean cell volume range is 82/100 ., I'm anemic .. What is wrong with these so called Doctors that they won't look at bigger picture and instead look at one thing numbers ! They are not human

22 Replies

oldestnewest
  • Lack of knowledge? Arrogance? Laziness? Complacency? Who knows.

    My levels were 243. I managed to get one injection from my GP and I now self inject daily.

    My life is far too short and previous to waste time fighting incompetent doctors.

  • Spot on .. It could take a few years for my levels to go well under 200 just need to treat myself and accept they are incompetent arrogant and not going to give them the chance to try and talk down to me again.. I'm also deficient in few other vitimins so will order some Transdermal vutimin & mineral spray to put on my skin daily and get on with my life ..

  • Please read Martyn Hoopers latest book where the various explanations help us to understand the difficulties in diagnosing and treating this complex illness. Perhaps it need not be - just test everyone with a newly raised bottom of the range - say 500 - and treat the symptoms.

    Things are not made easy for the GP's as the Guidelines seem long winded and GP's overlook the fact they are ONLY Guidelines and NOT rules.

    Lots of very clever people out there involved in the destiny of our health - but where is the common sense ??

  • I agree. Did you feel better after one injection? Why do you need to inject daily?

  • Alison-Thomas I'm not sure if your comment was for me but will respond anyway! I didn't really feel any different after one injection. Most of my symptoms are neurological in nature and need a more aggressive treatment protocol than the 6 loading injections. It can take a few months of daily/alternate day injections to treat some of these symptoms.

  • Yes, thanks, it was for you. Sorry to hear you need that level of treatment, I have heard the injections are quite painful. I have balance and memory issues but fatigue is the main problem. Where did you learn about treatment?

  • Alison-Thomas The injections range from painless to stinging a little. Being gentle, smooth and slow when administering has resulted in fewer painful injections-although if they do hurt, it's only for a few seconds.

    I believe balance and memory issues are classified as neurological symptoms and might require a series of regular injections to improve.

    I learnt about treatment from asking for advice on this forum, a Facebook forum and more recently from my own reading/experiences :)

    If you decide to self-inject there is lots of advice on how to start-many members here have been doing so for some time. The one starting piece of advice I will pass on from when I started is-be patient, it takes time to get better!

  • Thanks for your help x

  • I'm trying to investigate all this for my brother who has M.S very bad and symptoms of B12 problems. He can only use one hand well. Has anyone tried the b12 patches as these would be easier for him.

    Thank you all.

    Mary

  • With MS he should really first get B12 tested and then ask for injections. I wrote something on MS and B12 years ago. There were some studies done and turned out that B12 levels in spinal fluid was very low in MS patients. Get him tested before you start any supplements. But if you do want to go that way and injections are impossible or very diffilcult, I'd recommend nasal spray or sublinguals.

  • Thank you for your reply. I have posted a query on a new thread explaining what has happened in brief.

    Mary

  • How do I learn how to do the injections and where do I buy them? My B12 is 298 but my symptoms have me in bed for most of the day, unable to work or live a normal life. My doctor has agreed to one injection.

  • Why do you only get one injection? Did the dr say why? Only based on the B12 level? I would first go back and have a serious conversation, backed up with the scientif info and the guidelines in hand. Ask for the normal treatemnt (exacly like you said, based on the PC antibodies, the family history etc) If still nothing, ask for futher testing concurrent with guidelines. Or just find a doctor with some knowledge. But, have to ask, being anaemic ..how's your ferritin/iron and folate?

    And what is the MCV? 98 or 82?

  • I took some info to my appointment and he said: "I dont need notes, I know the symptoms." Which threw me off my stride and I didn't say a quater of what I had rehearsed. He says we should see if the injection makes me feel better but I have discovered it may not be a simple as that. He is doing a IFA test as the condition does run in my family. Haemoglobin 135, Foliate 12.5. Just noticed a star by mean cell haemoglobin with a reading of 32.5 and mean cell volume 99.5. Does this indicate large red blood cells?

  • Yes, they are on the larger side. Good that he's doing IF, and if positive he might give the normal dose (but you then first have to wait for result) but negative doesn't say anything and he might say that nothing's wrong (so prepare the info that it can be negative in up to half the people with PA). I just don't get the one injection and then we see....So what if you tell him straight after you feel something? You get more? Then tell him that ;) I would ask him why he deviates from the normal treatment and that you would like to try the normal loading dose to see if that works (and then of course it does, so you want to continue)

  • because my B12 is 298, he probably doesnt think I could possibly have PA because of the low range in this country. I suspect he has agreed to one to keep me quiet. But yes I did think that, I will say how much better I feel and then ask for the normal treatment. Thanks

  • You could ask for further testing (MMA/homocysteine) but that's only possible before that one injection. If you already had it then yes, tell him you feel somewhat better and want to continue. (maybe if you say a lot he thinks one is enough)

  • My GP gave me one injection yesterday to shut me up! My active b12 was 27 (25.1-165), she didn't know what that was but said my FBC is normal so can't be B12 deficiency! I'm not going to see this doctor ever again!

  • Hi .. My folate is 5.2 and my mean cell is 98 .. Is that indicative of P.A

  • Not necessarily. MCV can be high due to a couple of causes. But yes, it can be an indication.

  • I was told by a doctor friend that her surgery would not allow her to give B12 injections because they are afraid of being sued for overdosing.

    Never mind that, over in the US, clinicians are being sued for causing severe neurological damage through misdiagnosis and delayed treatment!

  • I asked a GP for a trial of B12 when my serum B12 was 252 . I was told I could have injections when it got to 200 . I said it can't do any harm as its water soluble . The GPs reply was that they could get into trouble because it was an injection. My assumption was that the injections could be construed as unnecessary by the powers that be.

    I never did get below 200

    Cheers Skeeter

You may also like...