B12 results

[morgan45]

I have had FBC and B12 tested for various reasons. I have got pernicious Anaemia. My B12 was 805 only six weeks after my last injection. My new GP has been making me stick to 12 weekly gaps. Any thoughts

Thanks

[fbirder]

Do your symptoms return before the 12 weeks are over? If so, ask the doc to check out the latest (online) version of the BNF for recommendations on hydroxocobalamin. They were recently changed to allow dosing every 2 to three months. That means there is no reason at all not to inject every 8 weeks if the patient needs it.

If that doesn't work - Keep a diary of symptoms vs injections. After two cycles show it to the doctor. Again, ask why you can't have jabs every 8 weeks.

If that doesn't work - Write a letter to the doc, asking why you cannot be treated in line with recommendations. cc it to the head of the practice. Include your symptom diary. If you can score the most variable symptom (I used level of fatigue) then try graphing it - frankhollis.com/temp/Fatigu... - and include the graph (a visual image can have much more impact).

If that doesn't work - You may have to accept that you need to take your health into your own hands and look at injecting yourself.

[Gambit62 Administrator]

there are a number of limitations to using the serum B12 test to identify a B12 deficiency - so much so that the BCSH recommends following symptoms rather than test results in determining B12 deficiency. The test measures the amount in your blood but says nothing about the efficiency with which it is transferred from blood to cells which is where it is used, or the efficiency with which B12 is used in the number of processes that require it. This varies considerably from individual to individual meaning that the ideal serum B12 (in absence of an absorption problem) varies significantly from individual to individual. The strength of serum B12 in diagnosis of B12 deficiency is seeing significant drops in serum B12 over time - but that only works if B12 levels are being monitored.

The BCSH standards do not recommend testing B12 after loading shots and using it as a way of determining treatment thereafter (this was a change in 2014 but a number of local standards have yet to catch up with this recommendation)

One problem with using serum B12 as a measure of B12 status after injections is that the injections themselves introduce a new factor that makes normal range totally irrelevant. Immediately after an injection serum B12 levels will be off the scale and they will gradually reduce as excess B12 is removed from the blood so what you are measuring - particularly at 6 weeks - is this effect and not whether enough B12 is getting into your cells. To make life more complicated significant numbers of people seem to respond to high serum B12 levels in a way that means the transfer from blood to cell becomes much less efficient meaning that they need much higher levels of serum B12 after injections have started. For some people this also seems to make the process that removes B12 from your blood for excretion via the kidneys much less efficient as well, meaning that serum B12 levels stay very high but your cells just don't get enough B12 to run all the processes they need properly ... which just means that using serum B12 as a way of determining treatment just isn't going to work.

As fbirder says you need to request treatment in accordance with revised BNF guidelines - 2 months for maintenance with neurological symptoms, 2-3 months without neurological symptoms. You should also draw their attention to the fact that the BCSH guidelines clearly discourage retesting after treatment has started unless there is a reason to believe that you are not complying with treatment

BCSH = British Council for standards in Haematology

The standards can also be found here

onlinelibrary.wiley.com/doi...

and your GP should be able to access them through the BNF