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!

This is a big problem for people with gastro issues like IBS, BAM etc.

Can I ask, does anyone else here with low B12 also have stomach issues?

Since I've been treated, I've had on-and-off awful stomach problems and struggled to link them to anything. Is this just another part of the B12 car crash? I've been wondering if that needs investigating, but I'm scared I'll get diagnosed with something like Crohn's, and I don't want another thing wrong with me...

Unless you are actually deficient then you are just wasting your money as the body will flush out any surplus

@SamphiretheTervosaurReturneth Do you not need sublingual or cheek spray to aid absorption? Or were you deficient purely due to diet?

My mom recently was quite ill from low b12, she had numb feet and balance problems among other symptoms. Hers is due to absorption issues so after the injections she started on sublingual tablets from Amazon and is feeling a lot better, but I think some of the feeling in her feet will never return. I think it has affected her mental capacity too tbh.

Dietary I think - nobody ever really did more after the initial loading - I only know about the megaloblastic anaemia as I was diagnosed with that in my teens by a newly qualified GP who was bloody marvellous - gave me a CFS diagnosis before it was 'the done thing'. My main symptom at the time was I fell asleep all the time, as I said nigh on narcoleptic. I seemed not to have any neuro symptoms, although I think I would challenge that now.

Have a look at the pdf I linked to, it makes the treatment pathways/decision making quite clear. She might have recourse to challenge her GP to do more!

Thank you for what you do, I appreciate this isn’t something you have control over!

Is there more treatment available privately at all? I’m on a low income, but the fatigue is taking over my life and as a working single mum I can’t be falling asleep whenever! I’d make cutbacks elsewhere if I could get proper treatment.

I buy my b12 vials from amazon.de and sharps etc from a uk based online supplier.

It is now understood there are some potential side effects from overdosing b12, but they're unlikely to be serious and almost impossible to achieve by injecting cyano or methylcobalamin alone, you'd need to be taking oral high dose adrenosylcobalamin or combining jabs with this high dose oral format.

It has risks, everything has risks, I wouldn't call it 'very dangerous' though no.

Buying the vials and the sharps yourself online is the cheapest way in the UK to get the treatment you require, you do have to be able to stab yourself though!

There is no need to do an intramuscular injection with it either, and this is whats painful about b12 jabs, so injecting it sub-cut (i do it quite deep but i have plenty of flab for that, as its quite a lot of liquid!) is much easier to achieve and far less painful!

My GP tried stopping my B12 injections during lockdown claiming the tablets would work just as well. The practice nurse advised me to eat fortified breakfast cereals (ie Rice Crispies). What a load of tosh.
If anyone has been diagnosed with B12 deficiency due Pernicious Anaemia then no amount of B12 taken orally will make the slightest difference. You can pop B12 tablets till you are blue in the face but they aren’t going to work if your body can’t absorb the B12 in the first place.
If you have been prescribed B12 by injection, then you should be on it for life.
The current NICE guideline dose for B12 is every 2-3 months.
The injections are not nasty if administered properly. Not even the loading doses.
Many people buy B12 for injection from Germany and inject themselves. Some inject daily, I don’t do this but I know the option is available if I need it.

It’s just a vitamin. Overdosing on a vitamin is not likely.

The Pernicious Society helped me enormously. I was able to persuade my GP to reinstate my jabs who was open to listening and asked me to forward literature and links from this site.

pernicious-anaemia-society.org/pernicious-anaemia/

I am prescribed hydroxocobalamin for b12 injections, my dr won’t let me have them earlier than 12 weeks, even though I am on my knees from week 8/9, so I also self inject.
Nice guidelines say you should have b12 injections every other day until no longer symptomatic, the reality is that most Drs just give you a 6 injection loading dose then injections 12 weekly. You can also be symptomatic in the lower end of ‘normal’ range but it’s often the case if ‘computer says no’ if you are ‘normal’. Normal isn’t optimal.

@Allthegoodnamestakken I get mine here. I used Google translate, they arrived in 3 days via DPD, my friend also buys from here.
www.versandapo.de/vitamin-b12-depot-panpharma-1000-mygml-iniecto-lsg-10x1ml-pzn-16199653

@Rubyupbeat you can’t overdose on B12, if you were having too much it would make your urine turn red as it’s urinated out.

@WednesdayFridayAddams
I get mine from the same place

That was what I was scared of. But, as it turned out, I was one of the many who had been 'diagnosed' without the full set of tests. It seems I have very low levels, negligible, of absorption and oral dosing works.

I also had a great practice nurse who explained how the process would work, so I didn't have to worry about 'running out'.

If anyone is in doubt the link I added upthread really is clear about treatment pathways.

I've just had my bloods done due to recurrent mouth ulcers and my GP thought it could be my B12 levels. My reading was 117 (normal is 145-914 according to the NHS) but a different doctor reviewed my bloods and told me that my B12 level is fine, no need any supplements! So I have to put up with 30+ ulcers on my tongue at any one time which makes me unable to speak and eat. Life is quite miserable at the moment 😞

Have you had a test for coeliac disease?

Yes @Anoooshka - it came back clear. I've been prescribed steroids for the ulcers now but it's now something I will be able to take forever. I just can't understand why the B12 level wasn't given anymore weight by the second doctor as it could be the explanation.

I just found out today I have 'borderline low' B12 levels. I only found out after having a full blood count as I had blood in my stool so am undergoing some investigations. My GP has said I need to be retested in 3-4 months, not sure what my exact level was.

@WaitingforToto so just take an oral supplement?

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

Your B12 level is low but it is within the normal range therefore you are not deficient. There has to be cut offs and if you're still within the normal range then GPs will just recommend you take B12 supplements - you can pick them up for a few quid in the supermarket and your body will just excrete any excess. You don't say in your post whether you already take OTC supplements, if you don't then I would definitely recommend starting off with those.

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

So pay for a private B12 jab then? Just Google "B12 near me" and it will bring up all the places you can pay privately for a jab.

I had baratric surgery on the NHS so I have a B12 jab every 6weeks or so. My level is 160 so the low end of the normal range and I wouldn't get a B12 jab but anything under 180 is classed as deficient for a baratric patient so I get one via the GP. Even then I had to go in to the GP surgery with a letter from my surgeon following my blood test, stating that the NHS and NICE guidelines advised it, before they would book me in as they had just looked at my result, seen it was in the 'normal range' and said no without looking at anything else.

I would challenge. I have the nhs app and that details my blood results and the range. I was 134 , levels start at 191 according to the info on my records. I had a course of jabs, a second test and now await seeing the doctor

I have just been told my B12 is "very low". My only symptom is hair loss (which has slowed down), and could also have been attributed to having Covid a few months ago.
I eat a diet rich in B12 already, and one of my multivitamins has it in, so I am not absorbing.
Injections are an absolute no. I am avoiding calling my surgery to chase it up because the thought of it is making me very ill. it took several wasted appointments to even get a blood test.
I am using patches atm, and will have a look at the tablets that dissolve under your tongue.

If you don’t have Pernicious Anaemia you should be able to absorb B12 orally through tablets or a sub lingual spray. Has your GP done a blood test to test for Pernicious Anaemia. There is a huge difference between PA and B12 deficientcy. I have PA and I could take 100 tablets and not absorb any B12 so I have to have mine by injection.

Im fuming. Had appointment to start B12 injections today, turned up at GPs only to be told should have collected a prescri ption for B12 jabs from chemists. No one told me Id have to source them myself . 20 minute wait at chemists only to be told they had none in stock. My count is 109 ! Dont know how long its been so low never had a test before.

Thanks for this thread Op.

I've recently completed the course of B12 injections and the difference in my energy levels is amazing. I didn't realise how bad I was actually feeling until I started feeling well again.

I also got diagnosed with an under active thyroid & low iron as well so not sure how much of the improvement is down to the B12 or other medication.

I'm getting another blood test in January to find out if I'll need the injections for life or can take tablets.

Good to know the injections can be bought from Germany

For those that say the injections hurt - ask the nurse/doctor to change the syringe. I had 6 injections last months and for the first 2 they hurt (more than normal injections would). On the 3rd injection the nurse said she's going to try using a 'covid' syringe (had a large stock of them left over) - it has a smaller needle. Had the last 4 no problem at all.

I have numb legs and feet and numbish hands - didn't realise this was a symptom of B12 deficiency (I'm also iron deficient). I hope it 'cures' this as it's really annoying now.

Going for my blood test this week after a month of being finished the injections.

Join the 'vitamin b12 wake up' group on Facebook and post your blood test results they will help you. I was really ill and couldn't leave my bed for months and gp just kept saying my blood test results were fine even though my b12 was right at the bottom I started self injecting and I am slowly getting my life back.