B12 deficiency symptoms but levels within NHS guidelines. Is it safe to self inject?

[MyheartgoingBoomBoomBoom]

For some time now I appear to have some symptoms of B12 deficiency (tingling finger tips on one hand, digestive issues, tiredness and no energy, sore tongue and in the corners of mouth, extreme anxiety, depression, vision issues, awful digestive issues, light headed especially from a crouching to standing situation).

Had lots of blood tests last summer and all came back ok. I looked on my records and note that some of my results came back as normal but on the low side, b12 being one of those with low normal.

It came back as 289 and the NHS range is 180-1000. GP insists it’s all ok.

However, I joined a few FB b12 deficiency support groups and they all tell me that my levels are very low and in other countries this would be classed as a deficiency. They say oral supplementation will not help and I should really be self injecting.

Anyone know much about B12 deficiency? Would I experience symptoms with these numbers?

I have never done anything like this before and wouldn’t know where to start and would be concerned what the hell I am injecting into myself, if I buy online. I know I can go to clinic offering this service but they are not cheap.

Has anyone done this? Where would I even start?

What's your diet like? I'd try supplements first and see how you feel. They worked for me. I wouldn't listen to people on Facebook and self inject.

What sort of vision issues are you having?
They're very rare and only happen if you're massively deficient - you would be considered deficient in some European countries and Japan, but not in the states.

What meds are you taking at the moment and what sort of digestive issues are you having?

sleepysleepytired my diet isn’t the best tbh. I have had a poorly digestive system for 25 years, I eat a very basic diet as a result, no dairy, no red meat, eggs etc. I only eat turkey and salmon for protein. I have been taking b12 supplements for some time but still have these symptoms.

underneaththeash I have these weird scotoma type visual issues, I call them my bright spots. Hard to fully explain. I also suffer from aura migraine so it could be related to those but these are slightly different to aura, they are like the blind spot I suffer at the beginning of an aura but these are much smaller and more frequent, they are bright when I blink against the sky or a white background, they don’t move at all, they stay put and are very distracting until they fade after a few minutes. They can appear anywhere within my visual field.
At one pint I was getting them all the time but I was also very iron deficient and had iron infusions which have helped a little now my iron levels have risen. I have had the vision issues looked at by many opticians but they can’t really tell me what is causing them.
Digestive wise, I have had upper and low issues for decades but they are getting worse despite clear colonoscopies, scans and endoscopies.
I have lots of nausea, indigestion, gurgling stomach, intestines and colon, excessive bloating, very soft stool, urgency and a general feeling of a very unhappy and unpredictable guy but despite following a strict low fodmap, dairy free and wheat/gf diet I have not managed to get it under control.

I take no meds apart from imodium a couple of times a week.

wow I could have written your posts, I also have IBS and fibromyalgia and vision problems. My B12 was around 170 in 2006 and I was put on injections for life. The docs stopped them in Covid and would not restart them, told me to take tablets, but they do not work on me.

I now buy the B12 from Germany and self inject. I taught myself from Youtube. Its scary at first but ok after that.

I go to a local clinic for b12 injections. Absolutely worth it, they give me so much more energy! I was like you, on the low side - the NHS guidelines for deficiency are largely nonsense, designed for cost cutting usually.

WashedUpHasBeen would you be happy to share where you buy your supplies from?

Dais79 is it expensive? I’ve enquired locally and they are charging £30-£50 per shot. How frequently do you have them?

I managed to get my levels to increase significantly by taking the sublingual nuggets - apparently B12 is absorbed better this way because if you take tablets that you swallow it's made less effective by stomach acid. Solgar used to do one, not sure if still available. I think this form is called methylcobalim but if anyone knows better please correct me if I'm wrong!

I’ll give those a go

My B12 is 291 and I’ve been having some horrible symptoms. I can’t say for sure they’re due to B12 deficiency though, and I’m certainly not about to start sticking needles in myself and injecting substances that haven’t been prescribed by a doctor.

My iron and vitamin D were low, and that can cause symptoms too, so I tried supplements for a couple of months. My numbers went up but it didn’t resolve the symptoms. So I started taking B complex and magnesium pills instead. This time it does seem to have improved, although I don’t know if it was the B vitamins or the magnesium that made the difference.

The tricky thing is, both my B12 and magnesium were measured as “normal” and the doctor said I didn’t need supplements. But 291 is still borderline and some countries will class you as deficient if your B12 is under 500. And apparently the levels of magnesium in your blood are meaningless, you can still be deficient even if your blood is measured as normal.

It can be tricky to treat generic symptoms such as tiredness, tingling, anxiety etc. There are so many things which can cause those symptoms. So don’t get too focused on B12. I would try magnesium as well, and supplement anything that was tested as being on the low side.

If you are taking b12 supplements but cannot absorb b12 (because of autoimmune issues or pernicious anaemia) then it will raise your levels (so they look normal) but that won’t be a true reading.

The FB groups should have told you that? Stop taking the supplements for 4 months (and that includes things like marmite) to get an accurate reading from a blood test.

Your first B12 injection should always be in a medical setting as there is a (tiny) risk of anaphylactic shock.

Silmar I’ve tried various forms of magnesium but they all upset my IBS (I have awful daily gut issues yet all tests have come back ok). I’m just so fed up feeling below par all the time, thought the iron infusions I had last year would have made a difference but sadly they haven’t helped much at all.

Have you been tested for coeliac?

the NHS guidelines for deficiency are largely nonsense, designed for cost cutting usually.

This. You have to have a level lower than the very lowest limit of the (notoriously low) NHS parameters to be considered deficient in anything!

Silmar I have, had blood tests for it and a gastroscope with biopsies, all clear for coeliacs.

Yes you can self inject safely. Many do and get their B12 from Germany. Look for the FB Pernicious anemia group. Lots of amazing info regulated by an expert GP.

watcherintherye Absolutely! In my experience the NHS are pretty poor with these kind of health issues. 2 years ago I was dragging myself through each day with ferritin levels of just under 3, almost non existent iron stores yet the GP kept saying there was no real guideline for this and just to carry on with supplements (which obviously weren’t helping), I had to lay down just climbing the stairs I was that weak.

vivainsomnia I am on that group, just so apprehensive at the thought of self injecting as I have a needle phobia.

I'd look into getting a different GP.
One at my old practice tried to say I didn't need the injections and supplements would be okay - even though the hospital doctor said I couldn't absorb enough orally. My new one has no problem with it, and they will even nudge the injections a bit sooner than 3 months if I feel I need it.

The best way to absorb magnesium is through your skin. The skin will take up all the magnesium you need and then stop, so it's also the safest method.

How to do this? Epsom salts! Put them in your bath if you bathe - or bath salts, which are just Epsom salt with added smells & colour. If you shower, you can rub your body with Epsom salt before getting wet and/or slap handfuls on while washing.

You can make a magnesium body scrub by mixing the salts with petroleum jelly (or any other gloopy medium, like hair conditioner).

Best of all - it costs around £4 a kilo.

... ...

Your symptoms could have lots of causes; please don't leap to self-prescribed injections. You can up your magnesium as above, try the sublingual B12 supplement, and experiment with dietary exclusions such as dairy and gluten.

I have most of your symptoms and have ME-CFS. I really hope it's nothing like that, and that you can restore your health with some sensible self-care.

Good luck!

I have B12 deficiency treated by injections. Sometimes symptoms return in the 2 weeks before my next jab and then I use oral spray which seems to reduce the symptoms. May be worth a try?

Anxiety could cause all those symptoms too.
Mt Sinai (USA) says "Normal values are 160 to 950 picograms per milliliter (pg/mL), or 118 to 701 picomoles per liter (pmol/L)."
I mean try what you like, but I don't think you have identified cause & effect here.

MollyButton I’ve booked with another GP for next month so hopefully she’ll be more helpful.

Thanks 2024GarlicCloves I will get some Epsom salts, I have used them in the past but probably not for long enough to have a lasting effect. In all honesty I don’t really relish the idea of self Injecting especially with something I’ve purchased off the internet but I’m just so fed up with my daily issues which have been going on for years now. I am very careful with my diet due to decades of IBS, been dairy and wheat/gf for years.

YorkshireGoddess think I will try the spray or sublingual drops and see if that helps.

lljkk I’m not feeling particularly anxious

You need to stop taking any supplements before you get tested as your results won't be giving true reflection. Many supplements interfere with results for example biotin can skew thyroid readings. If you've got an appointment next mi th I would stop all supplements now.

I apologise for suggesting dairy & wheat exclusions, @MyheartgoingBoomBoomBoom: I now see you're already doing that along with many other things.

Is your diet too restricted, possibly? Salmon and turkey are both excellent foods, but a normal, healthy gut needs a wide variety of things to digest. If red meat's problematic, could you add other fish? Poached/steamed chicken, maybe?

Are you getting enough carbs and fibre, really? Potatoes, other veg, fruits?

Yoghurt's very soothing to the gut; I love the Alpro ones, and also their custard!

Despite what I've just said, I'm going to suggest trying another exclusion. Everybody raves about how healthy oats are; I'm one of the many with an oat allergy (yes, even organic, hand-cut, etc). Oat intolerance is actually very common.

And - I hope it's obvious that every diet needs treats! Permit yourself chocolate, cakes, popcorn and what-have-you 😊

I use these

Vitamin B12 Depot Panpharma 1000 [my]g/ml iniecto -lsg 10X1 ml (versandapo.de)

and

Unisharp 1mL 25G 25mm (1 inch) Fixed Needle Low Dead Space Syringe (exchangesupplies.org)