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B12r

Posted , 7 users are following.

karen1967
karen1967

Can someone please give me a bit of advice,been having 3 monthly injections for pa for 3 years now, been today for injection have been really tired the last 2 weeks napping in the afternoon and very drained,mentioned it to nurse who said that it was normal i asked if they could do my injection may be every 2 month because I was feeling terrible no was the reply said my bloods were in the managed range of 367, feel really tired all the time,wish I could find a doctor who understood this condition.

0 likes, 16 replies

16 Replies

  • bluemaran
    bluemaran karen1967

    Posted

    Very briefly:  You should be on iron tablets too.  Cheap as chips.  Your doctor CAN give you more frequent jabs on the NHS (I'm on monthly ones).  Internationally a minimum reading of 500 is used, but 700 or more is better.  The NHS in Britain is lagging behind the rest of the world in this, which is why we have the highest rates of senile dementia.  Put your foot down, and remind them what it will cost the NHS if you can't work and end up in residential care.................
    • karen1967
      karen1967 bluemaran

      Posted

      Thanks for your advice am on folic acid tablets i asked nurse about supplements said it wouldn't have effect because my body cannot absorb it,really feel like am getting know where with them, even considering paying private to see someone.
  • carolyn44300
    carolyn44300 karen1967

    Posted

    I was in the same position. I asked my doctor if I could have the injections more often. He agreed I could and said to try every 10 weeks first and see if that was better but I could go down to every 8 weeks if necessary. He said no more often than that though so am not sure how bluemaran has managed to get monthly ones on NHS!
    • karen1967
      karen1967 carolyn44300

      Posted

      Nurse said that they are only available every 3 month sometimes i think it's down to money x
  • Heather2612
    Heather2612 karen1967

    Posted

    I receive my hydroxocobalamin every 4 weeks. My neurologist ordered this regime as I have nerve damage and neuro symptoms due to low b12. I feel awful after 2 weeks. The BNF states every 8 weeks if neuro symptoms. The BNF (British national formulary) is the drs bible on medicines and their doses etc.
    • karen1967
      karen1967 Heather2612

      Posted

      Hi heather i suffer with terrible pins and needles and when my injection is due i get slurred speech and trouble getting my words out, thanks for the info though
    • d39719
      d39719 karen1967

      Posted

      They really shouldn't be letting things get that bad.

      You can get patches, under tongue lozenges and sprays and tablets cheaply enough. Even if you don't absorb it properly, if you take a high enough dose some will get through. It stands to reason that getting a regular (even daily) dose has got to be better than a large amount every 3 months. 

      It'd be better if done under the care of your doctor, but we all know what that can be like.

    • karen1967
      karen1967 d39719

      Posted

      She said she didn't know anything about the sprays, banging my head against a brick wall x
  • carolyn44300
    carolyn44300 karen1967

    Posted

    Not sure the nurse would necessarily know. Better to check with doc.
  • june_rose
    june_rose karen1967

    Posted

    Hello I had to resort to paying to see a hemotolgist privately and insist he write to my GP as my GP said I would  overdose on 8 weekly jabs , and refused me

    what rubbish the hemotolgist said and felt I should have them as my symptoms. We're comming back at 6 weeks ,and there are no long term effects known

    my GP said she was now happy after she revived his letter

    it cost me £145 to get this but it's worth it or you have to get your own I have some I bought in a reputable pharmacist in Spainwhen I was on holiday there  just I case they refused

    8 week.y is better but it takes 10 days for it to be effective 

    so I still have 2-3 weeks feeing like I'm running down and like you so very tired 

    this nearly cost me my job so I had to do something

    keep asking ,

    many people on here are in the same boat it took 2 years of asking before I went privatly

    its not fair as this is important  medicine to us not just a vitimum  boast 

    hope all goes well 

    • karen1967
      karen1967 june_rose

      Posted

      Thanks for your advice and i didn't know you could buy it abroad, we go to lanzarote regularly.
  • isabel1
    isabel1 karen1967

    Posted

    If your surgery says it is expensive, point out that the injections cost less than £1 each but the cost of your continued ill health will be more expensive.  I get my injections every six weeks as I also suffer from pins and needles, dry eyes and sjogrens syndrome.  Unfortunately many doctors dont understand or dont want to.
    • karen1967
      karen1967 isabel1

      Posted

      Wish I could find a doctor that did understand,i am getting pins and needles most days, but worse when injection is along with slurred speech and trouble getting my words out. X
    • isabel1
      isabel1 karen1967

      Posted

      Have you thought about joining the PA society on line.  They give you so much help and information that you can give your doctor.  They helped me to get my injections more often.
  • carolyn44300
    carolyn44300 karen1967

    Posted

    My doc also said I would overdose if I had jab more often than 8 weeks yet previously he'd said you can't overdose on B12! I take high dose tablets and a spray called Boost just in case it gets through my stomach and helps a bit.
    • bluemaran
      bluemaran carolyn44300

      Posted

      It all comes down to being assertive.  Study all the information on the internet.  Get a full blood test at your surgery, obtain a copy and learn how to interpret it.  Make sure that your B12 is over 500, by being tested just before your next jab.  B12 is required to process iron, so make sure your haemoglobin, red cell count and ferritin are all good. You should probably be getting iron tablets too.  If your B12 is low it can cause other vitamins and minerals to run low.  In the end, you need to be very firm with your GP, or move to another.
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