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im sure I have pernicious anemia/b12 as so ill and gastrial parenial antibody but GPS wont agree

Posted , 4 users are following.

elizabeth07186
elizabeth07186

even with supplements my levels were 250 or 320.  I feel I am dying though I have other health issues may be causing issues..  I cant feel my legs and feet.  Im shaking.  crazy in mind.  emotional. never sleep. all night stomach acid, sweats, heart racing.  No menstruation only spotting for months.  All smears false readings for years.Hair falling out.  Psorisis.  brother has to have injections.  Ive changed 2 doctors surgerys now.  None will listen.  they say If i stop taking supplements for week and retest they will give me injections if below 200.  I know I wont go that low as takes longer than week for supplements to get out and it wasnt that low before.  Doesnt mean I dont feel ill and I thought it was about symptoms not numbers to be human!  Quite frankly even the slight improvement I get with spray Im not sure I can bear giving up.  Im awaiting to hear if I could have c at same time.  Aswell as suffering what I think is auto immune arthritis undiagnosed with no medications.  I dont know whether the under tongue spray is as good as injections in long term so just stick with that or whether to go week without supplements then to perhaps be told yet again I cant have injections anyway?  Is there any ideas out there people?  My D is also 52 when it should be 50-250 and Im on supplements for that too but they wont consider giving me anything for that either.  Anywhere private I can go?  I have visions of my body getting even worse by stopping things just to be told I cant have anyway.  My bones are crunching and I have severe issues with spine and hips as it is and dont want to feel worse just to be told I cant have injections anyway.  Is there anywhere in UK that you can have them privately?

0 likes, 10 replies

10 Replies

  • aveline
    aveline elizabeth07186

    Posted

    Oh no!  All of that sounds awful! sad  What "c" are you waiting to see if you have? Celiac? Crohn's? Cancer?

    Auto immune issues like Celiac or Rheumatoid Arthritis or Diabetes tends to affect many areas of the body and quality of life like you're describing. Have you been tested for those? 

    I'm sorry I can't help more as I'm in the U.S. and not familiar with the UK's health system. But, I wish you good luck for better health!

  • marion29181
    marion29181 elizabeth07186

    Posted

    Hi Elizabeth, how awful for you, this sounds just terrible. Do you have a private hospital anywhere near where you live? Sometimes they have their own GP's and you can pay to see them. They will also refer you if they feel you need to see a consultant. Have you ever been tested for underactive thyroid? Some of the low B12 symptoms are very similar, and the conditions are often linked. In this country they seem to believe that 200 is a magic level, but we can have symptoms at much higher levels than that. Some countries treat 500 as the cut off point. I do hope you can find some help and begin to feel better soon. With best wishes Marion
  • bluemaran
    bluemaran elizabeth07186

    Posted

    Demand that your GP refers you to specialists - a haemotologist and a gastroenterologist would make sense.  If they won't, contact Nuffield, and ask for the name of the nearest one you can see privately.  Phone and arrange a consultation.  If you have parietal cell antibodies you will almost certainly have pernicious anaemia, and this may be causing other deficiencies as well as iron.  This is NOT something that should be ignored.
    • elizabeth07186
      elizabeth07186 bluemaran

      Posted

      Bluemaran I have changed GP surgery becuase of this.  They still say no.  Yes I als have under active thyroid.   possibly something like RA.  I thoght changin DR would help but hey are overwhelmed with all y issues.  I have alo had mamogram for lumps in my breast and awaiting call for biopsy on those.  I wasnt told about gastrial partential antibody and found out by accident.  What other defficencies could I have.  I am ot ignoring it.  I am at my witts end.  First appointment at new Dr I tried hard to convince them I was deperate for injection they still said no even though my win does.  I bought spray for under tongue which seems to help with stomach issue at night as finding I cant eat anything without heart racing, sweats  etc.  Th rheumatologist I saw said until breast lumps confirmed will not do anything further.  What can I do?  Is the spray as good as injections?  If t is I wil keep bu

       

    • bluemaran
      bluemaran elizabeth07186

      Posted

      Sounds like you have several things going on at once.  OK, wait for the breast lump results, but your B12 deficiency is a digestive one, and you should be getting B12 jabs and iron tablets to resolve it while you get your digestive tract checked out for abnormalities.  Why are they so reluctant to give you B12 jabs - because you are within the minimum range for the British NHS?  These levels are under review, and you should aim to get over 500 at the very least.  I have jabs every month on the NHS, and tested 544 last time.  I feel good.
    • elizabeth07186
      elizabeth07186 bluemaran

      Posted

      yes.  nhs form says180-900-then comment 221-400 deficiency unkilely but seek further advice if suggested features such as neuropathy.  I think because I have so many issues they label me as making all up.  Thats why I have changed Drs I dont know what to do.  If someone can tell me spray is as affective I can continue to buy.  I need to know how long it will take to get in my system.  Am I making it worse by taking supplement ie will I then need to go without one to bring it down for long time.  Same with my vit D.  should be 50-250.  Im 53 taking 25 supplement but they wont give me anything.  I cant feel my feet.  My legs keep giving way.  My mind is crazxy.  Im screaming, crying all time.  If I dont take spray all night stomach bad in bed no sleep and sweats and heart racing.  Can I get as much B12 with spray as they would give me with injection?  They recommend 4 pumps = 1000.  I must admit been doing at least 5 times that (5000 I guess).  Do you know what strength injections are.  I guess its y NHS area.  I dont know whether to stop and suffer for a week though unlikely to bring below the last 319?  Or just take spray under tongue if as effective?  OIr just give up on life to be honest.  Ive had enough for sure.  Been through hell for year now.  Where are you in country?  Is there someone I can see?  I emailed the Dr Chandy but he is so far.  There must be something I can do?  Maybe my symptoms are from possible lump effects Im dreading to think about.  I have awlful hip and back issues.  They say I dont need iron.  I dont think they did lots of bloods.  When is review coming do you know and are you in industry?  I changed to new surgery hoping they would be different.  My brother has injections.  We are twins.  I dont know he carries gastrial parenial only me.  Im worried about stomach cancer.  Also taking anti inflammatories with the tablets that also affect stomach acid.  Worried these are making it worse.  Do you know injection strength versus spray?  How long it will take to make me better?  How long it would take to get spray out system if I wanted to try for bloods?  At end of day if spray same I may as well just buy it and be done with it!!!
    • elizabeth07186
      elizabeth07186

      Posted

      ok so can someone tell me if I definately have gastrial parenial antibody I always need an injection and what is loading dose strength?  I have printed that out from PAS website and at my witts end as GP still says it depends on what my reading is and not on the antibody.  I have already gone through 2 practices partly becuase I think I have upset them. I have tried not to tell people jobs.  They clearly know more than me but I know my body.  I am soooo ill with variety of things and I discovered I carried this a year ago and I asked GP what it meant and was told nothing.  Please can someone provide something other than PAS website that A GP will actually act upon and should I stop taking my spray for a week to try and get reading down?  Is there anyone anywhere that can write o my GP and tell them I must have injections?  My stomach is showing issues if I do not take spray excessively every day.  I am worried.  I mentioned stomach problems to the new Doctor but with all the millions of issues I brought up Im guessing they were overwhelmed.  Can I make everything ok with the spray or is this just an inbetween touch up??  Thank you anyone for advice.  I am desperate.
    • bluemaran
      bluemaran elizabeth07186

      Posted

      I think there is so much going on that it's impossible for anyone on this site to answer properly - which may be the problem with you GP too.  Here's a suggestion:  Write down all your symptoms and the drugs you are taking (prescribed or otherwise).  Keep it as brief and simple as possible.  Put it in a letter to your GP, to give them time to review the situation and prepare for your next appointment properly.  Then go in and see them again.  Take a short, written list of questions to ask, and note their replies down.  Try to work with them to develop a strategy for addressing your symptoms in a methodical way.  I think it is important for you to stress your gastric symptoms, as these could be significant.  Ask if they would be prepared to refer you to specialists.  Be cool, calm and organised.  If necessary, book a double appointment, so you will have time to cover things properly.  Best of luck.
    • elizabeth07186
      elizabeth07186 bluemaran

      Posted

      Hi Bluemaran

      Unfortunately I did do that.  Double appointment, bullet points for main issues then overview.  I even had typed a full review and asked If I could leave it with her but she said no.  Dont matter how I try I think I must make them feel insulted.  I did stress symtoms.  Tried to not talk too quick or get too anxious.  It didnt work. I did also write all they said down too.  Im not sure whether to just keep taking the spray for now to stop all the gastric symptoms but notice last night I still got it anyway.  I am really worried there is some damage in there but as I say I am awaiting breast clinic to call me in for other nasty things. If I could guarantee I could get same amount of B12 with spray as people do with injections and how much to use that would do for now.  Any ideas?  Thank you for all your advice.  Are you in profession or just a fellow experienced sufferer?  All your time has been grately appreciated.

  • bluemaran
    bluemaran elizabeth07186

    Posted

    Just a fellow sufferer.  I'm not sure why you feel B12 spray would reduce stomach symptoms.  From my reading, the gastric trouble could be the cause of the B12 deficiency, not the other way round.  If you've come to the end of the line with the NHS, then your only route is private medicine.  A referral isn't essential, and  - if I were you - I'd get myself a gastric specialist privately right away.  If your stomach is playing up, it follows that absorption of nutrients will suffer, with all kinds of different consequences.  The history of thyroid, parietal cell antibody and rheumatoid issues could all be linked.  Time to take control.  Best of luck with the breast lump outcome.
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