To want B12 treatment?

[Chryst]

So my B12 levels have been dropping over the past few years. I’m now suffering from many B12 deficiency symptoms including hair loss, headaches, tingling limbs and absolute exhaustion. I mean I have no energy at all. I’m barely functioning.

My B12 level is now 163 and dr says it’s “normal”. Anything under 155 is deficient.

I just want treatment for it, I’ll pay for it! I just want to feel normal again!

Is there anywhere online where you can get blood tests cheaply for what you actually want?

I was low in folic acid for a while and was given high supplements, I was then tested again and told its ok, although I havent been given the results to check for myself, however I realised after the first set that they literally only tested me for a few things, I wanted a test for all possible deficiencies and my cholesterol, blood sugars etc etc. I have had pernicious anaemia before but through folic acid. Im on double strength multi vitamins as Im on a low cal diet at the moment but I do suffer from tingling in my hands and feet and this has come on in the past few months which worries me.

If you had pernicious anaemia before you still have it. Go back to your GP as a matter of urgency

Those of you who are buying ampules from Germany, is it hydroxocobalamin or the Cyno one?

I was told I just needed a loading dose (6 shots every other day) then the tablets, but to reassess at six months?

I felt so much better after the shots, but I feel like I haven't maintained those levels. I'm better than before I took the shots, but the tablets aren't anywhere near as good.

I haven't been told I'll definitely need more injections?

You are only on B12 injections for life if you have pernicious anaemia and cannot absorb B12.

For people who are just low, but who can absorb B12 through dietary sources, the loading dose should be enough to bump you up and then vitamins/dietary changes keep you topped up.

My levels abt 5 years ago were 59, probably had been for a year. Couldn't grip things, awful memory, balance issues, pins and needles in hands, etc, headaches, falling asleep at the wheel and everywhere else, etc, etc.
Back then normal levels were 300-900, but 600 seen as ideal according to my GP, but anything under 200 was seen as low and so treated, and under 100 extremely low.
I had loading doses every other day for 2 weeks and then every 12 weeks which has bever been often enough. I crash after about 7 weeks, but they've refused to do them anymore frequently saying it's against guidelines. Neuro symptoms never really gone and I have PA and barbaric issues.
Then levels were updated and range was increased to 150-900 being within range and only under that treated.
After a year my levels rose to around 180ish, but I still feel awful after abt 7 weeks. It's taken since then, so around 4 years, of fighting to get them to prescribe it for every 8 weeks, which they've finally just agreed to as my levels are dropping again.

I'm also deficient in Vit D, iron, haemoglobin, ferritin, calcium, potassium, etc.

They're mostly just not interested even though my mental health was really suffering from feeling so awful all the time.

That was meant to say bariatric issues but my phone autocorrected to barbaric, lol

Thanks, that sounds less contradictory to what I've heard!

Doctor couldn't figure out why my B12 was so low (it was below 145, I think), but I have been tested for intrinsic factor, and hopefully once I recover, I should be able to absorb B12 normally. I have an appointment in the New Year with a dietician to assess what I'm eating and how I can maximise my B12 intake. If that doesn't naturally get my B12 up, they'll have another think.

It's been quite helpful reading this thread, actually. Until I discovered my B12 was so low, I had no idea what was happening to me, but I thought it must be something terrible. I was shocked to find out it was one vitamin deficiency causing all my symptoms, as I'd never heard anyone talk about it, and it felt so extreme.

I honestly thought I was losing my mind, and I had no energy to do anything whatsoever. Plus the heart problems - oh, the heart problems! And my general depression and anxiety, which I'd never suffered from before.

A big thank you to the OP for starting this thread and to everyone else for contributing. It's nice not to feel so alone.

PS Why isn't this more well-known? Low B12 is awful, and I bet most people have no idea what the symptoms are!

I was surprised that this had never come up with my monthly full blood count prior to cancer med issue, but apparently B12 is a separate test.. Ive not felt un well except for recent balance problems and my nails have flaked and split really badly, hair is also thin and lank but Ive put that down to chemo meds.

I’m getting my first injection tomorrow! Gone private, £16 from an aesthetic nurse

anyone know how quickly I should expect to feel a difference?

It was gradual for me, I remember it took a few months for me to start feeling better.

Did you get tablets to take too?

Well by chance I spoke to the GP today about something else and just grabbed him quickly (becuase you cant ask about other medical conditions if you're in a discussion about something else) and mentioned the tingling hands and feet and said I wanted a test for b12 so he said he would put a slip through. I hope he has.

That's rubbish-whoever told you that is ill advised.

People with pernicious anaemia, some medications cause it...

I felt an instant boost after the first two injections, but then the improvement became more and more gradual (which TBH, was a little disappointing as my expectations from the initial boost left me hoping for some kind of miracle).

I think you'll feel a lot better quite quickly, but it will take several months to fully get back to where you should be.

@bellac11 i use a company called thriva they’ve been very good.

i’m about to order a new set of tests (haven’t had any for 18 months) as I have generalised anaemia (not specifically the type mentioned here) and lots of symptoms. First GP appt available?…16/1/23 🙄

If you are low but don't have any issues absorbing, I took the natures plus source of gold multivitamin
I knew it was working as I went for bloods and my B12 just came back as HIGH with a note asking if I was on B12 injections!
It's the only time it's ever flagged up out of all the multivitamins I've used and have had so many blood tests

Has anyone B12 deficient tried sublingual tablets/chews?

There are a lot out there and different doses too. Not sure which one to go for.
I don't know "how" deficient I am (as in the numbers)... just that it was very low.

My B12 was 148 earlier this year. I am vegetarian, if that's relevant.
I was convinced I needed injections and that my body could not absorb B12.
They put me on B12 tablets and my levels improved.

I have the hydro.... B12 jab every 3 months at GP surgery. Never notice any change at all.

Have a look privately. Many nurses near me do it as a sideline. I pay 35 per jab. Afyer the 1st I felt amazing. 2nd nothing at all. Failing that, get oral drops as these absorb better than tablets.

As above.
lots of medical aesthetics clinics over b12.
enter your city and B12 onto google and you will get some show up.

£30-£50. But please make sure it’s a health care professional injecting you are surprisingly there are non medical people offering this service.

I'm really pissed off about B12. Despite now realizing that I have a medical condition that impacts absorption, I've never been tested and lots of symptoms have been attributed to other things.

I'll be starting injections when I can get an appointment and really hope they'll work.

Why aren't they routinely testing when you're a likely candidate for low levels?