I have been worried about my vit b12 levels for a while now. When I have it it tested its been around 166 - 174 and the doctor says it's fine. I have several symptoms which would suggest low vit b12 including memory loss, brain fog, numb lips, sore tongue, cold hands and feet, tingling toes and tinnitus. I also had a scan last year for something else that showed an enlarged spleen. I also had a low folate just below reference range - I don't have the figure but might be 5.
I finally got Fed up and went and had a private active b12 test which was 20. The lower limit is 25. When I took the result to my GP they didn't know about the test and said I needed to get further tests including another serum vit b12. I now have to wait for results then GP seeking advice from haematologist.
Does anyone have any Advice? I just want treated for this and hopefully start to feel better.
Written by
trew
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I think I must be incredibly lucky because my GP put me on 3 X monthly injections for life straight away when I was 175. My symptoms were similar to yours. Your story sounds horrendous. I don't know which country you are in but I am in the Uk and would probably get a private appointment straight away for a second opinion. I knew they are expensive but your health is so important. I'm really sorry you are having to go through this.
"and said I needed to get further tests including another serum vit b12"
Which tests are they going to do? MMA, Homocysteine, FBC (Full Blood Count), Folate, ferritin and b12 can all be useful tests to help diagnose b12 deficiency plus a "bloodsmear"
go to go so can't say more. have a look at some of my previous posts on other threads.
With your symptoms and readings i doubt very much that you will hear anything other than 'get it sorted' from any of us on this site. Lol
Has he taken further bloods, if not, do not actively take any form of B12 as it will skew your results. But yes personally i think he should be treating you.
Please try showing your GP the BCSH guidelines on treatment of cobalamin and folate deficiency - particularly the summary of recommendations - which clearly says that treatment should be on basis of symptoms not test results and that delaying treatment can result in permanent neurological damage
As frustrating as it is at the moment, if you can hold on and jump through all of the testing hoops that your doctor is putting in front of you, getting an actual diagnosis and officially sanctioned treatment are the best possible outcome. At the very least, having the diagnosis in your records will be helpful whenever you change doctors or have to fight for more treatment. It's best not to supplement while you're in the midst of testing though, so it's your call on whether or not it is worth it to wait.
Your levels are very low trew and it is unacceptable that your doctor is risking permanent neurological damage by waiting for even more tests when the treatment is so simple. I would try writing to the surgery and I hope this extract from the BCSH guidelines might help persuade your GP to begin injections as soon as possible :
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."
Here are links and an excellent film below, which explain more:
The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
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Active B12 test - again
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B12 Blood result
B12 Deficiency 
