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Low vitamin B12....

Posted , 7 users are following.

corinne04472
corinne04472

Hello...

I hope you can help me. I am not really sure where to start but hoping for some advice as my GP doesn't seem to understand.

Firstly I have been quite symptomatic the past 3 weeks and I am currently signed off of work. I am a general nurse but this situation is baffling to me.

First of all I started to notice some weight loss which was welcomed and not drastic. I also felt really shattered but have changed job and moved house so I expected that as a consequence. I also have suffered IBS but have been having diarrhea on numerous occasions in past 6 months even though I follow a balanced diet of veg and protein.

However, the past few weeks I have Been really struggling. I first started to feel quite light headed and like a fuzzy drunk feeling in my head. At first it was every few hours then it increased to most of the time. I also found it a struggle with my eyesight and often feel blurred vision or a struggle to adapt to lights at night. I was sitting watching TV quite relaxed and suddenly I felt like my heart skipped a beat and I became light headed. I got really scared and decided to go to the gp. I ended up having to go to out of hours and they referred me for bloods but had me complete different tests. I could not walk in a straight line as I was losing my balance. This was very frustrating. I also started to get numbness and heaviness in my hands and right arm. Getting to sleep at night is difficult although after I sleep I still feel like I need more.

Anyways my mood has been low and I have been diagnosed with depression previously.... but the way I am feeling I could see it rearing it's head again and I was really feeling sorry for myself.

The gp diagnosed an inner ear infection and I started treatment but the dizziness and fuzzy head didn't lift. I got my ear syringed but the nurse said she didn't see that would be a reason for the way I was feeling. They diagnosed sinusitis but that nasal spray did nothing either.

Today my bloods came back and are fine except my B12 is 158 and they say this is borderline but I am so symptomatic which concerns me if this is not really a problem yet at this level.

I am really struggling as I feel so low and weak yet no one seems to understand It x

Does this sound familiar ?

thanks for advice and taking time to read this essay Haha. I am 31 and feel like a dark cloud is over me x

0 likes, 15 replies

15 Replies

  • marieelle199
    marieelle199 corinne04472

    Posted

    Get all your blood work done this can be anything from anemia to pernicious anemia to some vitamin deficiency I'm no doctor to say what you have but I suggest do all your best to figure out what's going on  
    • corinne04472
      corinne04472 marieelle199

      Posted

      my bloods were done and.the B12 was 158. Just not sure if that is low enough to account for all symptoms. Thanks for reply x
  • marieelle199
    marieelle199 corinne04472

    Posted

    Put up your hopes there's absolutely nothing to feel down and depressed about these are common symptoms maybe it is the vit B12 even if it was border line it may start causing symptoms and anxiety and worrying etc. will add to that 

    I feel exactly the same i lost weight feeling needle stings all around my body etc. tomorrow i have an appointment with my gp hopefully something will come up 

    Best wishes 

     

    • isabel1
      isabel1 corinne04472

      Posted

      Sorry you are feeling so bad.

      there are some very helpful articles on the pernicious anemia society forum (PASOC).  I got much more of an understanding of what was wrong with me after being diagnosed with PA and all the worrying symptoms I had were the same as so many others in the same boat.  I get B12 injections every six weeks now as I cant go for three months without becoming quite poorly.

      unfortunately most doctors do not have any understanding of B12 deficiency

      but pasoc can give you all the info to present to your doctor.

      Hope you get sorted out soon and remember you are not on your own.

    • corinne04472
      corinne04472 isabel1

      Posted

      Thank you so much for your time that is most definitely helpful. I will check the site out.

      Hope to get to the bottom of it soon as the symptoms are horrible cause most people don't understand. Thanks again x

  • aveline
    aveline corinne04472

    Posted

    Were you also tested for Coeliac Disease?  That could cause low B12 (and other deficiencies) and account for all of your symptoms. Then again, your B12 levels alone are probably enough, combined with the move. 

    Low and weak are how I felt - and coming to these message boards helped me understand that the standard is rather high and by the time you're "borderline", you're really quite low. I also have vertigo, IBS and Raynaud's (I'm mostly healthy, really...) so I can have some of the crazy symptoms already, but low B12 really knocked me on my keester!  It's the worst of all my issues. Try to get the doctor to agree to injections. And check to see if Coeliac was ruled out, or ask for that next...

    Good luck!!

    • corinne04472
      corinne04472 aveline

      Posted

      Hello and thanks for the response

      I haven't had a test for that no, however I will look into that further. I am most definitely going to try and get as much info as possible to present to my GP. Borderline In the UK is much less than other countries so I think it's something we need to have more research in. Such a simple thing and can make you feel so poorly x thanks for your time and best wishes

  • caitlin39841
    caitlin39841 corinne04472

    Posted

    Corinne. so sorry to hear of your dilemma. the symptoms of  b12 deficiency are  horrible. you have my sympathies.

    158 is very low.  in the UK 200 is the 'considered' low, generally speaking. however,  levels and parameters vary according to which labs and which lab references are used. ppl can be b12  symptomatic  @ under 500.

    the problems with  Medics (GP's etc) is, they look at the serum blood  results rather than the actual b12  symptoms i.e the presenting picture.  your current symptoms are fairly classic b12  neurological symptoms and need prompt treatment. you will have to persist with & educate your GP. i also feel it's important that other conditions with overlap symptoms are ruled out.

    best thing to do right now  (if u have the energy) is to go onto the website 'HealthUnlocked' in the 'Pernicous Anaemia Society'(PAS) section & re post (cut & paste) your (post) symptoms on  there. you'll get a very informed step-by-step 'what to do' advice/instructions from the experts on that website.  they are thoroughly informed, helpful and supportive. you could also have a look at the PAS website. 

    meantime take good care of yourself. there IS hope after b12 deficiency. it's a treatable condition.

    C

    • corinne04472
      corinne04472 caitlin39841

      Posted

      I am actually quite emotional because even though this is a site I feel like finally how I am feeling is recognised. Thank you so much for responding. I will take the advice and try and gather as much as I can before a telephone consultation on Friday with the gp. He doesn't even see the need to discuss in person.

      Thank you again

      corinne x

    • sarah57965
      sarah57965 corinne04472

      Posted

      I have the exact same symptoms.. they put mine down to ear infection bit vertigo did not shift so they diagnosed bbpv which i still have. I have all those symptoms but i also have like an inner tremble / vibration.. also shaky and weak muscle and lots of light headedness. My vision is a joke. Problems with light blurred vision. Ive had all thos for 8 months and finally after several gp visits and finding out my levels were 133 ive started the loading doses.. my eyes are getting better a tiny bit but thats it up to now. What are your visual symptoms? I see colours in my peripheral and terrible night vision see lots of afterimages when watchin tv and ghost vision. My email is [email removed] if u wanna talk. X

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • caitlin39841
      caitlin39841 corinne04472

      Posted

      Hi again Corrine. b12d can be a v. demoralizing & frightening condition. one can feel they are totally on their own with it cos of the lack of awareness of it's debilitating effects on the body/mind.

       this website and the 'healthUnlocked' one will be right behind u every step of the journey on how to get properly diagnosed.   many will have experienced the 'medical brick wall' you're currently experiencing. but u know something - 'brick walls' can be knocked down with the right equipment i.e.  up-to-date information/knowledge & protocols. it's just the b12 d ones  don't seem to reach  the GP's desk. 

      all good luck on Friday. will be willing you strength & focus with the GP.

      C

  • Heather2612
    Heather2612 corinne04472

    Posted

    Hi Corinne

    All your symptoms are typical of b12 deficiency but you do have neuro symptoms which should be addressed. Google the BCSH Cobalamin guidelines. Study pages 8 and 29 for treatment guides. It should help you receive treatment to prevent irreversible neuro damage.

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