To demand treatment for B12?

[SweetMaryHell]

My B12 levels are 119.

I read last night that nhs guidelines in the midlands state that levels below 145 with neurological symptoms require immediate IM treatment (injections, loading doses every other day for 2 weeks then once every 3 months).
My GP is saying my B12 is “low end of normal” and therefore don’t want to treat it.

I’m so angry about this now. I have horrendous pain, memory loss, constant headache, hair is falling out in clumps and I feel shit. I’ve had 2 weeks off work because of it. Meant to be going back tomorrow but the way I feel today I don’t know if I’ll make it.

I’m going to request an urgent appointment with the GP today and outright tell them that I want B12 injections as per nhs pathway for the midlands (I’m not in the midlands). Even if they just prescribe the loading doses and I’ll pay for the 3 monthly one privately.
AIBU to do this?? I can’t function!!!

@RockinHorseShit

Have you tried sublingual B12 tablets OP, they are supposed to be better absorbed. Worth a try?

Not worth a try until diagnosis & treatment has been secured as they can mess up blood results, but not help symptoms & so block access to effective treatment. B12 supplements are advised only as a back up to treatment, not instead of, as deficiency is often due to malabsorption

This doesnt entirely make sense. Malabsorption is about supplements not being taken up by the gut, with sublingual tablets the b12 goes straight into the bloodstream as with injections.

This doesnt entirely make sense. Malabsorption is about supplements not being taken up by the gut, with sublingual tablets the b12 goes straight into the bloodstream as with injections.

@Porcupineintherough

You get only a tiny amount of the B12 in these pills compared to 100% with injections, they put blood test levels up though, but don't help symptoms as it's inactive B12

A good example is my DD, we had her on 20 plus of these pills a day as she was in a hell of a state & a wheelchair was a good day.

They did very little for her, though allowed her to touch the floor with her toe without screaming in pain.

Her loading dose of 6 B12 injections got her up & walking again & not needing a wheelchair in under 2 weeks. She took the pills for months before securing treatment & her blood results were always in range as BHS B12 tests aren't reliable as it measures all B12, both active & inactive, but only active B12 can help symptoms

My late father experienced similar treatment, so I took him to a private GP who prescribed injections. I would recommend doing that. I have had similar issues with thyroxine dosage for an underactive thyroid. I self-medicate a little higher than the GP gives me to stay awake...and my bloods come back within normal range. 'Normal' for a clinical range is not always leaving patients feeling 'normal'.

@RockinHorseShit ah, thanks for explaining.

@RockinHorseShit, that's an important point you've made about having the first injection under medical supervision.

My B12 levels are 119.

I read last night that nhs guidelines in the midlands state that levels below 145 with neurological symptoms require immediate IM treatment (injections, loading doses every other day for 2 weeks then once every 3 months).

The guidelines you're referring to state a lower limit for serum vitamin B12 of 145 ng/L.

You didn't state what units your measurement was in. The reference range is 160-950 ng/L or 118-701 pmol/L (unhelpfully, some trusts also state it as 160-950 pg/mL). If your level was 119 pmol/L it is at the lower end of the reference range and your GP is following guidelines correctly. If it was 119 ng/L it is very low and would require immediate treatment according to the guidelines you cited.

As we try endlessly (and unsuccessfully) to explain to medical students, numbers without units are meaningless.

This might be useful...

cks.nice.org.uk/topics/anaemia-b12-folate-deficiency/diagnosis/interpreting-investigation-results/

& this ...

pernicious-anaemia-society.org/wp-content/uploads/2016/04/uknationalqualityassessmentschemeforhaematinicassays1.pdf

My GP threw me off the books for asking for b12 injections as per guidelines.

It just doesn't seem to be taken seriously, along with thyroid and anaemia. Women's problems!

So I considered my options and, for me, self treatment was the answer. Learnt how to inject myself, did my first injection at my friends round the corner from A&E, felt a million times better and now go sublingual drops every morning

@nodogz

My GP threw me off the books for asking for b12 injections as per guidelines.

It just doesn't seem to be taken seriously, along with thyroid and anaemia. Women's problems!

So I considered my options and, for me, self treatment was the answer. Learnt how to inject myself, did my first injection at my friends round the corner from A&E, felt a million times better and now go sublingual drops every morning

Do the sublingual tabs work? Do you do regular injections or did you just have the one?

Do the sublingual tabs work?
Do you do regular injections or did you just have the one?

1. See my post below... basically very little

1. You need a loading dose of 6x injections over 2 weeks, must be taken with high dose folate, complete B vits & probably extra iron too & high potassium diet ... these work together to heal symptoms & are very important. If you have Nuro symptoms, you need a jab every other day until no further improvement

Your first jab needs medically supervised due to potentially dangerous allergic reaction needing an epi pen... you can pay a clinic for your first & do yourself, or that's not an option, my friend sat out side