Serum B12 - 224 ??

I was told by this was "normal, no action needed" & picked up a print out today - the print out says my B12 is 224 & that it needs to be under 197/866 to be considered abnormal

My folate is 8.5 range is 4.60/18.70

LDH was borderline on the last test, so I was told to repeat & I asked for B12 to be added to the test after reading that POTs symptoms & much more that I live with can be down to PA - LDH serum seems okay at 459 this time.

There's a LOT of PA in my family, both sides, but especially my dads & Im only now realising how much it affects & feel quite upset & angry as I was refused tests many years ago, because I hadn't lost weight - I score well over "make an urgent appointment to see your GP" score on the PAS questionaire. I've always believed the weight gain was fluid, not actual weight - something only now I'm beginning to have taken seriously with heart tests & a diagnosis of hyperadrengic POTs

Though I'm not huge at s size 12, I'm bigger than I was & I constantly look 8 months pregnant, have lost feeling in lots of places, patches all over my body, finger tips, heels, etc, etc, heart racing, exhaustion, brain fog, hallucination (blamed on migraine) kidney disease & much more

My daughter is also very symptomatic & Im scared for her, she has an EDS Hypermobility diagnosis, but wasn't born with problems. She suffers a lot now she is almost a teen. Sensory processing disorder, POTs symptoms, diagnosed as such by an EDS specialist, but her 24 hour BP test was said to be normal & she's too young for the tilt test doctors now don't accept she has POT, dizziness, nausea & more

I've had to diagnose us & battle our GP for every thing, I was originally diagnosed as having M.E & Fibromyalgia, with chronic migraine, told not to transfer my health problems onto my daughter when she was clearly unwell, aching all the time & ongoing diarrhoea after a stay in hospital at 5 - this was blamed on growing get pains & IBS caused by school stress until she was diagnosed as having Joint Hypermobility at 11 - they now accept its EDSH, - which also turned out to,be my true diagnosis too - but where as I was like her, Hypermobile, I'm not sure it's the cause of how bad I really am - looking into PA, it fits far better, especially with my Mum diagnosed before she died, & 6 cousins, an aunt, grandfather & uncles on my dads side - my husbands sister is also diagnosed with PA, so our daughter is surely a high risk ??

I don't want her to end up like me, but I can see this is going to be another battle, so I would be grateful for any insight & advice please

Thank yiu

2 Replies

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  • Hi,

    Have you ever contacted the PAS? They are helpful and sympathetic and a source of info. If you leave a message they will get back to you.

    pernicious-anaemia-society.... 01656 769467

    I think the office is open 8am till 2pm today.

    I wrote a very long post with a lot of info on the thread "Self Injecting" by Bethvegan.

    Some of the info may be helpful for you.

    "I was originally diagnosed as having M.E & Fibromyalgia,"

    So many on this forum have a similar experience. Martyn Hooper mentioned this on his blog recently.

    martynhooper.com/

    b12deficiency.info/misdiagn...

  • Im sorry for all your and your daughters problems, i got my notes the other day and my old doctor had wrote 'shes looked it up on the web and decided she has it' !!! I changed doctors got tested my b12 was 124 (145-800) after other tests i was diagnosed with PA, We having a fight now as my adult daughter tested at 102 but because her IF is ok they refused to treat her! Ive self injected for years and after talking to martyn hooper at the PAS, i am a member, we decided to put in a letter of complaint and if they didn't treat her then she would self inject too, but the doctors decided to treat her, sorry for going on but its just to show you that you will have a fight on your hands because even though in our eyes your b12 is low in the doctor's eyes your b12 is low and officially he doesn't have to treat you, after getting in touch with PAS i would definitely think about self injecting, also theres no harm with self injecting yourself and your daughter and seeing if you have improvements then if you do stop injecting for a whike wait until your b12 goes low again then go back to doctors but it will take a long time, maybe a year fir this to happen, i know because when i got diagnosed my daughter got tested and hers was 168 they wouldn't do anything about hers as it was normal good luck

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