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!!!

Join the wake up vitamin B12 group on Facebook. Lots of info on there about sourcing and buying your own B12. You cannot demand treatment per a pathway of another CCG .

I’m on that group.

It’s so bloody ridiculous that different parts of the uk treat a condition differently!

Yes YABU, normal levels are 118-71 pmol/L so your doc is correct in saying you're the very low end of normal.

*701

Yabu. Just take it orally you can buy it otc.

Well it's certainly worth a try.
Is it possible something else is causing your symptoms?

B12 deficiency often means that normal vitamins cannot be absorbed orally.

There's a lot of contention about b12 levels and what is normal. I can say that many other countries have a much higher threshold for b12 deficiency than the UK.

I had to see several dr's before I found one who took me seriously. Ask for a second opinion.

Honestly this is what drives me mad about google. The midlands pathway refers to ng/L. Your doc is saying that you're at the low end of normal, so is clearly using pmol/L. Nanograms are different to picomoles. There's no such thing as a blanket 'b12 level' as there are different units of measurement.

YABU The pathway (I haven’t read it) might also tell you not everyone needs injections, some can have it as tablets.

Do you know why it's so low? Nutrition deficiencies are often due to either underlying conditions preventing absorption (e.g. thyroid) or poor diet. Addressing these may be just as important as supplements.

Figure out why your b12 is so low in the first place op. Otherwise you are bandaging the problem but not addressing the source.

OP have you had your thyroid levels checked?

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

YADNBU & NICE guidelines are on your side too. Not to treat anything under 200 immediately is officially negligent too!! You can be symptomatic with higher levels too as the tests aren't reliable

They are putting your life & mobility at risk. Contact PALs with a copy of NICE guidelines & insist on treatment

My vit b12 levels where 115 when I got tested. I had the same problems as you, pins and needles, memory loss, hair loss etc. The day after I had my bloods taken my gp phoned me up and asked me to go in and see him that afternoon. He sorted out my loading doses and continual treatment.

This is what a decent gp should do. Go back and see him/her and ask why your low level is not being treated. Have they checked your intrinsic factor as well?

@DiscoLover

Yes YABU, normal levels are 118-71 pmol/L so your doc is correct in saying you're the very low end of normal.

At the very low end, w symptoms of deficiency. Op is not unreasonable at all.

I had a real battle with my GP to get tested and then diagnosed with a B12 deficiency despite having a family history and having under active thyroid which I had been treated for over many years. Eventually I was diagnosed with pernicious anaemia and started B12 injections. For me it would start to wear off after 9 weeks and as the GP refused to give me the injection more frequently than the usual 12 weeks ( although they can if there is a need) it really wasn’t a great solution. Anyhow COVID struck and they stopped doing the injections for a while so I purchased Vitamin B12 chewable lozenges online at a dose of 2500 micro grams I actually prefer them to the injections as a regular daily dose works better for me and I don’t have difficult weeks where I am just waiting for an injection.

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

There are only a few surgeries in my area that have continued to give b12 since covid, luckily mine is one of them

My mums, however, have employed someone to purge all records of patients that have the injections. Mum has now been classified as b12 deficient rather than the original diagnosis of pernicious anaemia. Meaning mum no longer gets the injections. She is suffering and looking for a somewhere that will do them, nowhere private does them here.

As you're already on the b12 Wake Up group you'll know how rare it is for deficiency to be treated as per NICE guidelines.

When you're as ill as you are, you have to make a decision as to how your going to use the little energy you have available. In my case I decided to self treat and two years later I'm on a maintenance dose of 1x weekly which costs around £50 per annum.
OP, for the cost it's not worth risking the damage low b12 can cause and if you're struggling the fb group have a donation scheme from where you'll be given help to access supplies.

Message deleted by MNHQ. Here's a link to our Talk guidelines.

DO NOT DO THIS until you have had your first medically supervised injection, it's dangerous & not recommended by anyone, especially not the B12 groups & PAS due to potential allergic reaction

You can buy a B12 injection at a clinic & then follow up with this, but diagnosis is important for all kinds of reasons that could affect future surgery etc. We need care with anaesthetic for example & B12 injections directly after any surgery

Most of us do do this between GP injections though as we are rarely given enough