Prescribed 3 monthly B12 but not for PA

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Hi, 

I wonder if anyone can please offer me some advice. 

18 months ago I was diagnosed with a B12 deficiency - prescribed 5 x B12 injections and sent on my way. 

About a year later I had symptoms return (had just had a baby) and this time my folic acid was low. Whilst taking folic acid drops my symptoms again returned, but worse. 

Another blood test has shown B12 deficiency again. I'm 3 out of 5 into my injections again. The GP consulted haemotology who suggested I have 3 monthly B12 injections from herein. 

My problem is this - the GP has said I don't have PA. I've had FBCs, but never any investigation beyond that. It probably isn't a big deal, and maybe it's just having kids that has made me aware of my own mortality, but does it go any deeper than this? If it's not PA then why could this be? Are they just treating the symptoms without getting to the route of the cause? Am I overthinking this? 

I'm a meat eater, mid 30s, mother of 2, I rarely drink. I have terrible slumps where I don't think I can get through the day. I'm exhausted but sleep terribly. My skin is terrible, my eyesight has worsened, my hair is falling out, I spend most of my days feeling sick and dizzy recently.  I also get skin rashes on arms - pinprick, painless that seem to appear for no reason and fade a few days later. The combined symptoms and tiredness mean my mood is terrible and I end my days feeling awful for losing it and shouting. I just have such rage from feeling so rubbish. My GP isn't concerned about any of these symptoms.

So is it worth me investigating the cause prviately, or should I just suck it up, take my B12 and stop Google'ing? I realise I might sound a bit of a hypochondriac and please tell me if that is the case. Maybe some people just don't find out why it happens, it just happens? 

Many thanks for any advice. 

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  • Posted

    Hi,

    When your GP said you haven't got PA, what did he or she base that judgment on? Have you had tests for intrinsic factor? or any other tests other than FBC? If you are not sure, you can ask for copies of any blood tests at the GPs surgery, mine charged 10p a page for mine.

    Please don't think you are being hypochondriac, you know you are not feeling normal and you need to get to the bottom of why not, before you can start getting better. If your GP is not bothered about your symptoms, is there another one you can see who might be more sympathetic/knowledgeable?

    One place to get good advice and information is the Pernicious Anaemia Society website. There are many people on there who have gone through what you are going through, have had to fight for their health and their B12, and will be able to give you some help and support.

     

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    • Posted

      Sorry Jean, my phone just deleted my message!!! I'll be back on later to reply. 
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    • Posted

      No worries, my replies have vanished twice today - annoying, isn't it? And I don't even have the excuse of using a phone, I am on a laptop!
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    • Posted

      Hi Jean,

      Glad it's not just me ..!!  I can't remember what on earth I wrote before, but bascially thank you for taking the time to reply to me. 

      I've only ever had FBC (I've seen this on the blood requests I've had to give to the nurses each time I've had blood taken). I could be wrong and maybe they've done other stuff with it, but that's all I've ever seen.  My GP said that they've tested me (?) and it's not PA.  I will definitely ask for copies of my readings - thank you for suggesting this.

      I've seen the only 2 GPs at my surgery.  They seem to have a common theme in their approaches to this, and whilst I'm not denying their knowledge, there are things that I'm commonly reading about on many different websites that conflict what the doctors state. Their lack of interest and knowledge (even compared to the NHS website) is a bit worrying.  When I told them I'm feeling worse, of my rashes, of my moods, the response was that those things are probably related to other conditions!!

      I've got a whole load of stuff to read up on thanks to the helpful people on this site, and the PAS is next on my list - thank you. 

      I've found out that I'm in the fortunate position to be able to access private healthcare through my partner's work insurance. Initially I wondered if I was being a bit over the top about trying to access it, but the more I read the more I believe it's worth a go. I feel that sticking with my usual GPs isn't really going to get me any more tests or answers and ultimately help me feel any better.  As I type this my eyesight is lagging - so my eyes aren't keeping up with where I'm looking. I actually have felt a little drunk all day! I had to make my kids watch a DVD earlier so that I could get 10 minutes on the sofa because i couldn't carry on. I know that sounds dramatic! When I awoke my legs were numb and like jelly for about an hour after ...!!  

      Thank you once again! 

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  • Posted

    Hello you have more or less written stuff that ally's to me as well , I have just had my shot and am waiting for it to start working last time it did not touch meso I am pretty desperate as you can imagine any way I am thinking of going to see a specialist nut do not know who or what spec ilium I need to sort out my low b12 . My gps have lots of practices in my area so it's no good me changing as they I belive will all sing from the same song sheet!

    allthough interestingly I have been asking for my jab earlier s the systems come back 6-8 weeks and was told several time no not possible as you will over dose

    when the nurse was working out when my next one is due she asked me if I was an8 week or a 12 week patient .i feel so let down by there lies 

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    • Posted

      Hi June,

      I don't think that the GPs are lying. I just think that they basically don't know and that they follow standard practise. It is probably written up in some medical hand-book such as MIMS, and they are afraid to step out of the square due to litigation. 

      FYI you basically can't overdose on B12. They did some pretty "out there" treatments for cyanide poisoning when they injected huge doses of hydroxycobalamin IV into patients. Also in some of the attempts to treat multiple sclerosis they used daily injections of methylcobalamin. It is hard to find the studies in the literature though, but they are there. I don't know why they are reticent to give people extra jabs. I mean if it was a headache you could keep taking the headache tablets 2-3 times per day, yet it is known that things such as the anti-steroidal medications can actually kill you or at least give you gastric ulcers. Yet for B12, where it is clearly making a difference and where they know it works, they don't give it. 

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