I wonder if anyone can advise, I had a blood test in June, the following day I had my regular 10-weekly B12 injection, my blood test result then come back and my levels were over 2000.
My GP then stopped my injections and asked for the blood test to be repeated 3-4 months later, I had those results back and all other blood results are normal however my B12 is still over 2000.
My GP has written to the hospital to get advise but I’m starting to get the tingling symptoms back which surely I should be because my levels are so high.
My doctor has really worried me, I had a liver function test in June and that was normal and my other bloods are all normal, anyone else experienced this?
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Squashliv147
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Did the GP explain in detail why she stopped the injections?
I would expect serum B12 levels to be high if a person is on regular B12 injections.
Mine were well over the top of the range when last checked.
High B12 levels when a person has not been supplementing B12 or having B12 injections need investigating as it can sometimes be a sign of liver or kidney issues
I'd like to know why your GP was checking your serum B12 levels when you were on regular B12 injections.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
"but I’m starting to get the tingling symptoms back"
You could keep a symptoms diary. Pick up to ten symptoms to track. Score their severity every day (or weekly if daily is too much). Note any treatment you are given.
This could be useful evidence of improvement or deterioration in symptoms to show doctors.
The fact that your tingling is coming back suggests to me (I'm not a health professional) that you need your injections now.
If B12 deficiency isn't treated adequately, there is an increased risk of developing permanent neurological damage, including potential damage to spinal cord.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Some UK forum members resort to treating themselves as a last resort if NHS treatment is not enough for them.
Some get extra injections from private GPs or beauty salons. Some try taking high dose oral B12 tablets but this doesn't work for everyone. Some turn to self injection using injectable B12 from Europe.
Petition
There is currently a petition to get injectable B12 available over the counter in UK
When I was first given loading B12 injections, nothing happened. When I was then given a maintenance dose of 1 injection every 3 months, I got significantly worse.
My GP tested my serum B12 the same day I had my injection - it was >2000 ng/L as expected. 2 months later, it was 860 ng/L - still over range. She decided to restart B12 loading after blood tests including autoantibody screen, bone profile, folate, vitamin D, etc and crucially also included methylmalonic acid (MMA).
The result of this was that my MMA came back above range despite all the B12, which gave me a diagnosis of functional B12 deficiency. The two injections a week I was getting continued for six months, because finally I was noticeably improving. I was given 3 months of ferrous sulphate and folic acid tablets as both were low in range. Later, I was also given vitamin D on prescription as osteoporosis of the spine was found.
After having to ask the nurse each time whether I'd been injected yet, I finally felt an injection after three months at this frequency. Not painful, just joyous !
I still have injections at around this frequency, because it keeps the worst symptoms at bay most of the time, but I now self inject. It is not a cure, it is containment.
My GP retested my B12 for a good reason: I was not responding to treatment and she was focussing on finding out why. She followed this up with an MMA test because she'd once had a patient with functional B12 deficiency before - only one patient, a decade previously.
My MMA finally dropped into normal range after three years, on the 6th test.
I would imagine that my B12 levels now remain at >2000 ng/L. My GP never tested them again as she said there is no point !
It is all about intention.
If you have had a liver function test with a normal result, this could help to rule out another cause of either naturally high B12 or high MMA (renal problems) - so the logical next step would be to have an MMA test. Very difficult from primary care (my GP tried three times) but secondary care - a haematologist, say - would be able to get this done. Should your MMA level be above range, you might also be sent for a SIBO breath test (small intestine bacterial overgrowth) which is another cause of raised MMA and of B12 deficiency. The bacteria can rob you of many vitamins, including B12.
B12 deficiency with neurological symptoms should be treated differently from those without : firstly, every other day injections to continue until no more improvements can be gained (nerve repair can take a long time) and then an injection every two months. No further need for B12 testing.
This is the medical guidance in UK: see NICE, BSCH or BNF.
hi there I was put on b12 jabs every 3 months get a blood test it to high so jabs were stopped.It realy is a vicious circle.cut a long story short after years of and on jabs not only makes you ill but it takes toll on ur body.Doctors don’t know the full picture unfortunately.After talking to a new doctor and trying to explain he seems to understand.He mentioned I have pins and needles and numbness plus inside body tremor that moved around my body.He put me back on b12 jabs every 4weeks and blood test no longer needed.I felt a huge relief lift from me.
I had same issues however they tried too stop b12 in haste it comes from the gut what one person's level is different your gp is like mine stupid, in uk we can almost rate our own 1.25 is norm think you gp is rather stupid as each individual is different with low folic and high b12 it does not always show up on normal test blood they differ b12 protects system my go up and down due too slow transit of my gut , check it out as if gp has contact hospital not very good at his her knowledge your levels are showing high due too bile duct pressing on liver belive me i been there and vit d low all conmected
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