I feel utter rubbish and seem to have all the symptoms of low B12. Have pernicious anaemia RA (20 yrs) Fibro & PMR.
Blood results are all ok according to doc. Test results B12 1099 range (130-1100) ng/L ) 0.001 under top limit.
Serum folate >20 range (2.7-15.00) ug/L Albumin 35 (35-50) g/L
I can see lots of info. on low B12 but nothing much on such high levels. Like so many others on these sites I am at rock bottom.
Are you on 3 monthly injections?
Hi hampster1, no I have never had injections but have taken B12 tabs, but stopped about a week before the blood test. I am wondering if it gets into blood serum does it get into the cells.
If you have a diagnosis of PA you should be on injections, tablets aren't going to help you. Treatment should be as per the BNF section 9.1.2, which is shown here under dose:
evidence.nhs.uk/formulary/b...
Many of us also need injections much more frequently than these guidelines suggest, if you have neuro symptoms the more the better (the guidelines actually do say every other day until no further improvement).
You will find lots of info here:
And can I recommend you join this Facebook Group:
facebook.com/groups/1749289...
And these are the new UK guidelines about B12 and folate deficiency:
bcshguidelines.com/document...
hampster is right
Thank you for the links, something I was puzzleing about has been solved. My notes, in one place, says PA (Hosp record when I had hip replaced last June) but a later letter just says anaemia and I should have ferrous sulphate 2 x day which I have. I couldn't make out what was going on when I read about blood cell size was enlarged, as my MCV and MCH showed the opposite.
I am76 and a bit entitled to get a bit confused but docs. don't have that excuse.
Another hosp. record says I have a duodenal ulcer due to NSADs, but a rheumy consultant states in a letter to my GP that I have a peptic ulcer.
My iron blood levels are better but my symptoms are still more like PA.
My doc just keeps saying everything is.o.k. but it is very much NOT. I feel so despairing
Please don't despair, armed with the right information you can get the treatment you need. A couple of things spring into my head. Firstly, if you've had a lot of surgery chances are you've been exposed to nitrous oxide anaesthesia. This inactivates all the B12 in your body so you can't use it, even though levels might look good. Secondly, you say you have an ulcer, are you prescribed anything for that? PPI's make it very difficult for your body to absorb B12 and other nutrients, such as magnesium. Thirdly, are you on methotrexate for your RA? If you are, you are probably also taking high dose folic acid. This would correct any megaloblastic anaemia thus masking ongoing B12 deficiency. Iron anaemia also masks B12 deficiency, as it pulls the MCV and MCH down. Finally, you don't have to have anaemia anyway to be suffering from severe neuro symptoms of B12 deficiency. You need to go back to your doctor and ask for injections as per BNF 9.1.2. for neuro symptoms. Get copies of any tests you've had done, it's particularly important to have good levels of folate and iron.
Are you supplementing, injections or orally? I had levels over 1000 without supplmenting and I was still deficient. I have functional B12 deficiency with neuro involvement and have been self injecting now for 2 months every other day. Certain conditions can elevate B12 such as cancer and maybe RA can elevate it too. If you are having injections testing B12 is useless because it will always be high.
Roslin
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