My B12 levels are 81! Advise needed!

[Zubes]

Hi everyone, just looking for some advice.
I have all the symptoms of b12 deficiency (no wonder!)
I had private blood tests done which revealed my b12 level being 81. The minimum is supposed to be 180 I believe. Had these done privately because I didn’t want to wait for the doctors and have just felt quite unwell for over 1 year now.
Took my private blood test results to my doctor and they have said they need to re do a blood test on the NHS and go from there.
Im concerned they won’t treat me if my levels are not low enough for NHS “standards” to treat.
So my questions are; what symptoms did you have? and also what level were you when they decided to proceed with treatment?

TIA!

When DD’s B12 levels were very low (100) her main symptom was tingling/pins and needles in her feet. She ended up having pernicious anaemia so had a series of 6 injections over 2 weeks to bring her levels back up to normal and now has one every 3 months for life.

@CherryValley5 Thanks for the reply! I’m hoping they will treat me, seems hopeful your DD had treatment with those levels, that I should be offered the same.
Is she feeling better now and how long before symptoms started to go?

As above, my B12 levels were super low. I had jabs every other day for 6 jabs worth then I have jabs every 12 weeks on the NHS. You can pay privately, around £30 for the jabs. Have you any symptoms?

To add, my jabs do work but around 2 weeks before I feel absolutely exhausted. I can always tell when I'm due a jab.

@MissRachelismycoparent Thanks for replying. What were your levels if you don’t mind me asking?
My symptoms are: tiredness, constant yawning, headaches, eye symptoms, breathlessness and aching legs walking up small inclines, lack of energy, general feeling of illness, low moods/mood swings, bloating, nausea at times, upset stomach. Just blah! some days it’s better than others.

DD never really felt bad or had any other symptoms to be honest, except for the tingling which gradually went away in the weeks after getting the loading dose of injections.

Most people will say that they crave their B12 injection and always know when it’s due because of tiredness, brain fog etc - DD has never had this nor does she feel an energy boost from the injections.

Level of 128; GP recommended tablets, starting at 4X recommended daily dose then tapering down over the course of 4 weeks. Now take a daily slow release. Seems to have done the trick quite nicely as symptoms resolved and blood levels good. Zubes, my symptoms were similar to yours. Couldn’t walk 200 m without getting breathless. Also headaches, shaking hands, tingling, loss of appetite, brain fog

Similar to this, but every 8 weeks for me.

@mamakoukla Glad you’re feeling better now! The Dr did say depending on my blood tests (NHS) that I’d have a course of injections and oral supplements for the rest of my life. Sat here with tingling in my feet now!

It's unlikely your levels will bounce back up between blood tests so don't hesitate to get the NHS test asap.

You and the GP need to work out if you are this low because you don't eat B12 containing foods (e.g. a vegan diet without supplements) and therefore might be fine with oral supplements or if it is an absorption problem. Absorption problems generally fall into 3 main areas - pernicious anemia or celiac or crohn's disease. Or some overuse of anti acid meds can prevent absorption too.

This is a useful page pernicious-anaemia-society.org/articles/testing-for-pernicious-anaemia/

@time4anothername Thanks for the info. My GP did say she is going to test me for being Coeliac and my iron levels at the same time, since I mentioned I do have a lactose intolerance.
fingers crossed I get some answers soon!