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Help please on how to approach my GP who does not believe my symptoms or matey the surg

Posted , 6 users are following.

june_rose
june_rose

Hi all I was told I had low B12  18 mths ago and given 5 dowse over a 2 week period as I was very tired skin and eyelashes coming off and brain fog

since then had an injection 3monthly but after 8 weeks symptoms return have pleaded with GP to have them at 10. Weeks as my job is at risk each time as I cannot concentrate 

but was told off twice for asking and was told I would be over dosing and thresher need with not having any as my levels were normal now ( only because I get it though)

i belive now I have been give half dose now as the phill is small and takes a secon to go in rather than ages before , how can I explain any more to my GP that I 

do not feel well I get painfull spasms in my legs ,breathless , and by mid day could sleep for England 

is ther any thing else I could take to help relive these symtoms

thanks people in antisapation 

. I am going to ask what

0 likes, 17 replies

17 Replies

  • JaneLeung
    JaneLeung june_rose

    Posted

    hey June, 

    I've had PA for 7 years since I was 15 and was diagnosed late so left with some neurological problems, you are allowed to take your injections more frequent than that & it's nothing you can really overdose on. You know how your body works best, & it is hard. PA isn't really seen as difficult to manage but it can be. Everyone's symptoms are different. I take mine every 6 weeks and I administer it myself. So there are means way to get it done. Just keep getting at your doctor & ask for an all round blood test to check that everything else is in balance. It's not fair but I'm lucky to be blessed with an amazing doctor. If anything your then going to have to get some advise for outside the GP. Good luck xx

  • ian26438
    ian26438 june_rose

    Posted

    You could either ask to see another GP in your practice or leave and sign on with another practice. I know it's a bit drastic but then again PA can have, as you well know drastic consequences! Good luck
  • june_rose
    june_rose

    Posted

    Thankyou for the replies, I do see another GP at the practice who had to fight for me to stay on it in the first place as the first GP very kindly told me that if the guidelines change I won't get any . I work with Nurses and they think I am on half dose because of the budget at the surgery . Can I buy it any where safely and how hard is it to inject your self as I am a coward !!
    • JaneLeung
      JaneLeung june_rose

      Posted

      I'm not sure about buying it anywhere as I get mine supplied free through NHS as it's ongoing medication. My nurse taught me many times before I was allowed to do it myself, it's a bit tricky, no air bubbles are allowed & you will never get use to the pain. It hurts especially when your doing it yourself. Good luck finding the help 
    • marie23577
      marie23577 JaneLeung

      Posted

      I like your reply Jane. I have started to self inject recently and thanks to my dentist find it pain free. He advised me to always stretch the skin taut and inject the liquid very slowly. Hey presto! No pain. 
  • june_rose
    june_rose

    Posted

    Thank you Jane i didn't think about  needing instructions to inject but thinking about it I would not have known where to,start. Plus I can imagin it would hurt,  its bad enough when the nurse does it. But am desperaty tired . Dizzy ,  Breathless and generally fed up after a few weeks . So I may pay for a second opinion or go to a herbalist to see if there is any thing they can do?
  • MadgeC
    MadgeC june_rose

    Posted

    Hi June, so you know what form of vitamin B12 you are being injected with. You may be one of the many people who do not respond to cyanocobalamin (the standard injected form), what you need is a mix of adenosyl and methylcobalamin, the two active forms of vitamin B12. If you want I can email you in-house for a supplier.
  • sarah92748
    sarah92748 june_rose

    Posted

    Hi June,

    You might be able to get more of the B12 you need by taking oral B12 in addition to the shots.  You should still have the shots, but you can absorb some additional B12 from taking B12 or B complex vitamins.  I've never been able to get a doctor to take my chronic low iron levels and fatigue seriously and diagnose me with pernicious anemia, so I take oral B12, a B12 complex vitamin, and I eat liver when I get tired.  That helps me a lot.  I hope taking B12 and eating liver could help you, too.  My doctors never understood.  It sounds like your doctor doesn't understand either. 

    • june_rose
      june_rose sarah92748

      Posted

      Thank you will try this ,hate pills but I guess I will have to stop being a baby and get on with it !
    • Heather2612
      Heather2612 june_rose

      Posted

      My vit b12 levels have ranged from 140 to 201 and my GP will not medicate.  I bought some b complex sublingual liquid from hook and and Barrett at a cost of under £8.  You fill a dropper and release it under your tongue.  Within a couple of days I feel great.  It is a liquid with 48,000 percent of recommended daily allowance.  It enters your blood under your tongue so works as good as an injection.  Ask your doctor for a copy of your levels.  Nhs will only medicate if your b12 falls below 140.  May be a good idea to have a full blood count done and have your thyroid checked too.  Always get a copy of your results with their ranges so you can check yourself. Good luck x
  • MadgeC
    MadgeC june_rose

    Posted

    Hi June and Rose, I didn't realize that NHS wouldn't supplement if you levels were above 180. That is incredible. Sub-clinical B12 deficiency has been shown by many markers to start at around 300. Studies even with patients at 300 have shown brain shrinkage of 2% within 2 years. This was not the case at 600. You need to get your levels way higher than this if you want to have any hope of repairing nerve damage. As for the under the tongue, there is no evidence of absorption from the tongue, but the extremely high dose does drip down into the intestine where you get a tiny bit of non-specific uptake, which may make you feel better. It won't be enough for neuronal repair though.
  • MadgeC
    MadgeC june_rose

    Posted

    Sorry, I meant 140 not 180. It is a bit hard to view and reply to posts at the same time.
    • june_rose
      june_rose MadgeC

      Posted

      Thanks madgeC I have got the under the tounge drops but doesn't seem any better am getting my jab on the 18th August can't wait this 3 months have been the worse ever am going to ask for my readings and dosage they can't refuse can they?. I would like to know where I can get patches or something to supplement because I am really struggling and can't see how I can live like this it's not living .

       

    • MadgeC
      MadgeC june_rose

      Posted

      Hi June, if you log onto the site you will see yoru messages on the top right of the screen. I have left you the web-site in a message there. My suggestion would be to start with the oils after your jab, and keep usign the oils. You should be able to then stop having the jabs and start the repair job on your nerves. This doesn't really happen if you are having the jabs. They increase your energy a bit but you need to have a steady trickle of B12 all the time to get better.
    • sarah92748
      sarah92748 june_rose

      Posted

      Hi June Rose,

      Hang in there and keep taking the oral B12!  It usually takes me several weeks to feel better when I start taking the tablets.  You should feel better after the shot you'll have soon, and I hope the B12 drops you've been taking have been slowly building up your B12 supplies so that you'll keep feeling better for longer after the shot.  Don't stop getting the shots! 

      They should give you your readings and dosage, so that you can understand where you are now.  Did they do an iron test too?  PA can cause your iron levels to be low, and that can make you feel bad too.  In addition to the B12 tablets I take, I like to eat liver when I'm feeling tired.  Sometimes that makes me feel better as soon as the next day.  Steak is good too.  I take a special over-the-counter iron suppement, Bifera, because I have trouble with my iron levels, I think because of PA.

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