Pernicious Anaemia Society
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Can't raise B12 levels

I was recently diagnosed with pernicious Annemia. My initial B12 level was too low to read on the blood analysis system used.

I received 4 injections in a week and my level rose to ~260. I thne began receiving injections every tow weeks for the last several months and my level does not rais above ~225.

Has this happened to others? Do i need a bigger dose (I assume there is "normal" dose?)or a dose more frequently? Seems odd that the level won't raise much above 200. Could this be an indication of some other issue?

3 Replies

Tthat sounds quite frightening , I think you must have more under lying problems , have you any autoimmune history in your family . You must have an absorbtion problem , get a 2nd opinion dont delay your B-12 level needs to be beyond top of the range .


Info about B12 treatment here:

Have a good look around that website as it's full of lots of useful info and links to support groups, such as the PAS and the PA Facebook group.

I suspect that you're just not getting enough B12, you say your levels were undetectable on diagnosis? That's truly frightening. Do you have neuro symptoms? If so, you are entitled to injections every other day until no further improvement in symptoms (i.e. indefinitely) under the BNF section 9.1.2. Symptoms list here:

Also important are co-factors folate and iron/ferritin, the B12 is just wasted if these levels are not good. You need high end of the range for folate and at least 80 for ferritin. Some people on frequent injections need 5mg folic acid per day pretty much permanently, otherwise their symptoms return.

Other things worth getting tested for are vitamin D deficiency, and as johnbarriesmith says other autoimmunes such as under/over-active thyroid.

Hampster x


My levels were 80 on diagnosis of PA and I had injections every other day for 3 months and then twice a week for 6 months after that. My levels took around 1 year to rise and that was even after such regular injections. I was diagnosed 3 years ago and I still self inject once a week now, if I miss a week I suffer for it. I also take daily folate as otherwise I don't benefit from my injections. My ferritin levels were below what they should have been so I take regular spatone iron supplements, kinder to the stomach and keeps my levels up.

I also saw a nutritionist and got all of my vitamin and mineral levels tested. This also helped. My vitamin D was very low so again, I take regular vitamin D but in liquid form. I struggle to absorb anything in tablet form because my stomach has suffered.

You need to get other tests done such as thyroid but give it time with the B12, it doesn't improve overnight.


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