10 Replies

  • Posted

    Mine was 115. Got the 6 loading dose injections in Dec and due to get my 12weekly booster in a couple of weeks. 
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  • Posted

    I had my boosters 2 weeks ago and feel better but not right. Cant get to see doc till 23rd march so i made appt for another test without asking her.
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  • Posted

    Yes, I have tinnitus, lost the use of my left leg to neuro issues, slept 16 hours a day, lost short term memory. I began with loading doses then 1 shot every 8 weeks.  I would be fine for  a few day after the shot then begin crashing again. it took 5 years before I found the Pernicious Anemia Society so i went up and down but now I am prescribed 1 ML every other day and I am up and functioning. I do have permanent damage from being that low and not taking the supplements that are necessary to absorb the B12. I supplement daily, have my bloods done every 4 months, and listen to my body when it is telling me something is off. 

    I am sending my blessings and hope you are up to doing the required research you will need to stay on top of this problem.

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    • Posted

      Its awful isnt it! Im going to phone docs tomorrow as i am sure i need more now and cant wait till 23rd to see her. Ive already had 2 months off work sad x
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    • Posted

      I read the Facebook Pernicious Anemia Society information.  They have helped me so much and the information is invaluable when you have to advocate for yourself and doctors aren't listening. 

      It is amazing that we have to fight so hard to stay alive.  I am so blessed to have a physician that reads the information i bring him and works to improve my quality of life. Pernicious Anemia may be incurable but with enough B12 and Folic Acid, it is manageable. 

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  • Posted

    Mine is currently 108, was 119. I am due to go back to the doctors soon. Should imagine they'll be giving me the booster shots after this second blood test came back low again. 

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    • Posted

      Hi Jade

      Next doc appt is 23rd march! Ive booked blood test for next week as symptoms returning. I think i will speak to pharmacist today to see if its ok to take pill form too. People seem to think oh its only a vitamin defieciency but my god its awful isnt it x

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    • Posted

      Please do not take pills before testing.  You numbers will be falsely high. Have you been tested for Pernicious Anemia, Intrinsic Factor Antibody, along with you folic Acid, folate, potassium, etc.

      if you skew the numbers, then the docs will not treat you because all they are seeing is that you have B12.

      there is a formula of B12, Folic Acid, and other supplements that you need to activate the B12 so your body can use it.  There are inactive forms of B12 in many over the counter supplements that should not be taken if you have PA as it causes your body to dump active B12. 

      For you health and safety, I highly recommend you research the Pernicious Anemia Society files.  It is invaluable information that will assist you in managing not only your health but also your health care rights. 

      I am am not a medical professional.  I am a Pernicious Anemia with Intrinsic Factor Antobody survivor.  

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    • Posted

      Thanks Dena, i will read up some more, i actually showed doctor your reply and she gave me folic acid as that was also., and another b12 jab. smile
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