Hi just out of interest, those on 12 weekly B12 injections via the NHS, what should your b12 level be if you randomly had it tested? Mine recently was 700 but that seems quite low despite being on injections.
Anyone have any ideas? Seeing doctor tomorrow and asking for more frequent injections etc.
the initial studies on the retention of b12 post injections showed an enormous amount of variation - in some cases serum B12 levels remained high for years after an injection, so not really possible to give an answer to your questions. some people feel okay at 700 whilst on injections and others aren't.
This is what my total B12 levels look like over time with injections every 12 weeks. This is total B12 (my active B12 follows the same trajectory). The 2 peaks are around injection time. The low points are when I am between 10 and 12 weeks after injection. Whilst I never enter the deficient levels, I come very close. I develop symptoms at around 8-10 weeks after injection, and that is the critical indicator rather than the numbers. This is the information I will be taking to my GP next week to make the case for 8 or 10 weeks between injections. My practice nurse told me to do that after I told her how I was feeling. She said GPs are highly reluctant to increase frequency from 12 weeks but will listen to a well reasoned case. Mt previous surgery had me on quarterly injections (so every 13 weeks in effect). Over 3 years this pushed my levels far lower than they should reasonably be. They didn't see the difference between 4 times a year and every 12 weeks...
Units are pmol/L
and here are my active B12 levels over the same time period and data points. Units are pmol/L
I have had them from nhs for 20 years . I have them 10 weekly
Hi,
I think when last tested, my B12 levels were well above the top of the range, probably above 2000ng/L. The nurse had a very concerned face.
We're all different....My symptoms start to return about 3 days after an injection so NHS levels of treatment were never going to be enough. What should matter most to the doctors is the symptoms not the levels.
In UK, guidelines suggest that testing B12 levels during treatment is not necessary.
PAS article "Testing B12 during treatment"
pernicious-anaemia-society....
Article from Dutch B12 website - units, ref ranges, treatment patterns may vary from UK
"Testing B12 during treatment"
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Hi I was never properly diagnosed with Pa as the first intrinsic factor came back negative. So then the Gp said I didn’t have it… the latest b12 a non active one was 700 so top end of the range, my Gp said looked like I was fine for b12, and the new intrinsic factor also came back negative too. So now I don’t know what to do. She refused extra b12 injections and said my peripheral neuropathy is likely to be something else so has referred me to neurology - which will be a massive wait on the nhs. So now I’m not sure what to do? The neuropathy in my feet could be Arthritis as I also have RA and in a flare at the moment too, however if it’s b12 what am I supposed to do? I don’t know where to get the self injection stuff and I don’t even know if b12 is the actual issue here. Frustrated that the doctor is so useless and not helping me.
"I don’t know where to get the self injection stuff"
wedgewood has written some very helpful posts on this on the forum.
Have you asked your GP if you could have Antibody Negative Pernicious Anaemia?
See links below
Testing for PA
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
There are other causes of B12 deficiency.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
"said my peripheral neuropathy is likely to be something else"
Both B12 deficiency and folate deficiency can lead to peripheral neuropathy (PN) but there are many other causes of PN.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
NHS link about Peripheral Neuropathy
nhs.uk/conditions/periphera...
Maybe show her the NHS page on causes of PN, it mentions low levels of B12
nhs.uk/conditions/periphera...
"I also have RA "
As you already have a auto immune condition diagnosed, I would expect your GP to consider the possibility of PA, Coeliac disease, Crohn's disease, Diverticulitis, all auto immune conditions that can lead to B12 deficiency.
Have you been tested/examined for other conditions besides PA that can lead to B12 deficiency?
If you have gut issues, have you been referred to a gastro enterologist?
NICE guidance Suspected Neurological Conditions
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist
cks.nice.org.uk/topics/anae...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Should be other useful info in my replies on one of your other threads on this forum.
Thank you for all of these helpful links. I will save them and read them all. Do you have the link for the references that states that a negative Intrinsic Factor Antibodies test means that you don’t have PA? I need some things I can arm myself with for my next GP appointment but it looks like self injecting is the way I will need to go!
B12 stopping injections 
Stopping b12 injections 
B12 INJECTIONS
Buying b12 injections
b12 injections 
