Blood levels.

[Leenda]

Hi everybody I'm new here in fact just joined right now. I've been diagnosed with Pernicious Anaemia for many years and receive regular injections. I was wondering what everyone else's blood test results are like and how often they get them done. I am interested if anyone knows what the optimum level of B12 should be for some one who has PA. Should it be nearer the highest level? Would someone with PA notice symptoms at the lower end of the guidelines even if it was well within accepted levels? I am very well aware that everyone is different but I suspect an optimum level for B12 should be higher for someone with PA. Thanks for reading my post and I look forward to your response. If there is more reading material on this subject please point me in the right direction. Thanks.

[fbirder]

Blood tests for B12 are pretty meaningless. Mine are above the upper limit of the assay (5999), yet I still feel like rubbish 8-10 days after an injection.

One thing you'll notice is that all of us in here push the notion that doctors should be treating the symptoms, not the numbers. If your regular injections are keeping you symptom-free then your serum B12 numbers matter not one jot. Contrariwise - if you're feeling crap a week before your next jab then you want to be asking the doctor for more frequent treatment.

Of course, they're likely to give you a blood test and send you away saying that your numbers look great, so you don't need more frequent jabs.

The latest recommendations from the British Committee on Standard in Haematology - bcshguidelines.com/document... - say that, once treatment is started no further testing is necessary.

[Leenda in reply to fbirder]

Thanks for answering my query. I agree. Test result figures are only numbers and are really just a snapshot in an on going film. I was just wondering if anyone had noticed significant differences in test results over the years without any change in injection frequency. With or without change in symptoms. By my own experience I need to be really near the high end of the guide lines to be feeling "good". But as I said snapshot in an on going film. Downloaded the bcshguidelines which I will read. Cheers for that.

[Sleepybunny]

Have you read these books?

"Could it Be B12" by sally pacholok and JJ.stuart

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by martyn hooper

Martyn Hooper is the chair of the PAS and has written other books about PA and B12 deficiency.

martynhooper.com/

b12d.org

pernicious-anaemia-society....

01656 769467

b12deficiency.info/

I think the PAS recommends having levels of at least 500. Have a look on Symptoms Checklist in library section.

pernicious-anaemia-society....

i've written some detailed posts in recent months.There may be some useful info on some of these if you search for them.

[Annalise32]

My 1st level was 212 (before injections), then 754, now >2000. Even tho the 754 is at the higher end of the range, my neuro symptoms have just recently started to subside a bit, after 2 months of every other day B12 injections. So I'm starting to feel better at over 2,000. Have a new doc, and of course he had to take blood work, with B12 included, even tho it's useless after treatment starts!