please help

hi everyone i have felt unwell since i was 17 now 46 doctors have treated me like i am a hypocondriac! had pos and endometriosis which told me ibs till i was 27 needing emergency hysterectomy had helicobacter diagonosed 6 times and treated which resulted in duodenitis ulcers and gastritis been struggling with stomach pain tiredness ,forgetfulness ,headache ,electric shocks, heart palpitations,sore body like ran over by steamroller! been in hospital with low pottasium and racing heart at 150 beats and low bp felt so ill went to different gp and my vit b12 is 103 and low folate of 2.6 took more bloods to test for pa and told can take 3 months for result but my issue is i havent been put on any medication for this and getin more anxious bout how ill i feel!! no one listens!! help!! my mum was same all her life and noone listened and she died of a blood clot at only 58!! am realy worried that pa is a hereditary condition my brother been goin bk to docs all his days with same issues and ended up with kidney cancer at 44!! please can somone give me some advice as feel that ill am dying!! thanku xxx

13 Replies

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  • The last thing you need on top of everything else is a delay in treatment regarding your low B12.I wouldn't wait 3 months.You should go back and ask when you will be given your treatment.Even if you don't have PA your B12 needs replenished.Hopefully the people on this site with the real knowledge can point you in the right direction as they have helped me greatly.I sincerely hope you wont be joining the growing group of us who have been treated badly and let down by our doctors and that you get treatment soon.

  • thankyou for your response just feel so deflated with the doctors!! i asked why i am not starting treatment and was told i need to wait for this pa test coming back but it ok for them its not them thats suffering!! im so glad i found this site as am reading others in same situation which is awful! thankyou for your reply xx

  • I'm sorry to hear that.I don't know why they couldn't start treatment if your levels are low.Hopefully your results will be a lot sooner than 3 months.Its small comfort when you are suffering but as I say if symptoms are from lack of B12 you should start to feel well if given correct doses. Hopefully someone who is better informed on the site can help you .Good luck.

  • thankyou so much for your kind words a hope the results in soon as cant go on like this it ruining my life!! as u all will know!! thanku for taking the time to rey means alot x

  • Your problem is low B12. The cause of that problem is irrelevant to the treatment - which should be started immediately.

    If a patient arrived with massive bleeding from the chest would they delay treatment while they decided if it was caused by a knife, gunshot, axe, ice-pick , etc.?

  • thanku for ur reply! thats the bit a dnt get leaving u to suffer a just want to feel well again! am going to go bk to docs on friday see wot they say kp ys posted n thanks everyone x

  • I just wanted to reassure you that low B12/Folate cannot cause a blood clot, so if you do have PA and your Mother did too, that was not the cause of the blood clot.

    ANYONE can get a blood clot at any time, for any reason, sometimes there are no reasons, only risk factors - but low B12/folate are not risk factors, so please stop worrying about that.

    Nor can it cause kidney cancer.

    I'm not trying to be funny, I am GENUINELY trying to reassure you.

  • thanku for ur reply thats put ma mind at ease just dnt know much about this and starting to panic!! lol thanku x

  • Hi there, going to reply a bit better now I have bit more time...

    First off, you are not a hypochondriac - just because they don't currently have a reason for your symptoms, for you feeling very very ill, it does not mean there is not a reason.

    For years they kept telling me that my symptoms were not neurological, that they must be functional - not once did ANY neuro turn around and say "hold on, you have pernicious anaemia and you've not had injections for nine years, NO wonder you're so severely ill".... I now have very little faith in the medical profession to always get it right....

    Therefore - just because the symptoms you are having do not have a current label for them, it does not mean there's nothing wrong. I promise.

    It sounds, by your B12 and folate levels both being low (B12 VERY low) that you have B12 and folate deficiency which would cause the neurological symptoms. Whether you have pernicious anaemia or folate issues or not, you should be on both B12 injections AND folate tablets. (I'm on 5mg a day for 3-4 months - my level was 2.3)

    My doc took me off my injections in 2008, and it's only since finding a new doctor's practice that they've finally reinstated them.. (I'm on every 3rd day until I see haematologist on 18th Sept) I'm not trying to make this about me - I'm saying, find another doctor, get ANOTHER opinion, you may just be lucky like me and find one that instantly puts you on B12 and sorts you out.

    So, in conclusion - fight to get given the medication you need. Excess B12 is pee'd out so even if they only give you ONE injection, it will be SOMETHING until you get your test results. (with your level being so low one injection would probably not be remotely enough)

    You need instant medication of B12 injections (hydroxocobalamin (think that's how it's spelt) and 5mg Folate. (Folic Acid) If you have to fight for this, then you really must. Let's just hope you are listened to now though, instead of all the years later, that I got listened to.

    I wish you luck - lots of it - that you find a doctor that is willing to help you!

    In the last resort you COULD self inject with B12 whilst you wait for results, but it would affect any future results.

    One of the other wonderful members will give you advice on that, I can't self inject due to my level of poorliness, and my Fiance would rather not touch me with something sharp and painful.

    Keep us informed of any progress sweetie.

    very best wishes

    ,

    Granny x

  • awww thanku so much fr ur lengthy reply...much apreciated!! its all very frustrating when you know your own body and i know im not well! it must of been awful for u being ill so long am so glad u found a gp that listened! i have appointment friday and am hoping she will start treatment asap if not then i think id go down the road of injecting myself as cant go on with feeling so ill!! thankyou for your encouraging words and al post let u no how i get on fri!! fingers x and thanku again x

  • You are deficient in B12 and folate is at the bottom of the scale. With your history and lack of medical intervention I wouldn't be waiting another 3 months before starting on the supplements.

  • What supplements would you suggest, I have bought B12 sublingual cyanacobalamin 2000 Mcfadyen and have been taking them for three weeks now and am not seeing any improvement yet, I am interested in what this site thinks about my tablets!

  • One of the more knowledgeable guys on here said that we actually only absorb 1-2% of the sub-lingual b12, so I would suggest either upping to the 5k one, or self injections.

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