B12 deficiency - does anyone have experience of this?

[Coffeeisnotmycupoftea]

I am wondering if this could be contributing to some of my health issues.

I have struggled with some chronic health issues for many years and was iron deficient and anaemic for a long time.

I just can not get some of my issues under control. I happened to comment on a Tik Tok the other day and a lady messaged me explaining that many of my symptoms where in line with B12 issues. It turned out that she is an expert of B12 deficiency and runs a well know B12 charity. She asked for my blood test results (which are all 'normal' according to my GP and NHS guidelines) and said that I am more than likely deficient in B12. We had an interesting telephone conversation, she was so helpful with advice and guideance. Tbh, she more helpful than any GP I have spoken to over the years.

I am now wondering if this could be one of the causes of my years of issues and it is something that I really need to explore.

If you have or have had a B12 deficiency can I ask what your symptoms were and do you know what the cause was?

Yes, I have regular injections. There is a Facebook group that may help, here.

www.facebook.com/share/g/1Sn9Zxxem6/

I'm no expert, but my mental and physical health have improved dramatically since starting to take iron, vitamin D and a vitamin B supplement daily 2-3 years ago. I can't remember why I added in the vitamin B supplement, but I was definitely deficient in vitamin D and had very low ferritin levels.

Oh, these are some of my symptoms:-

Exhaustion despite sleeping 8 hours per day
Sore tongue
Tinnitus (which drives me insane)
Jaw clenching and headaches
Daily digestive issues
Anxiety
Depression
Very cold hands and fingers
Can not tolerate heat or cold
Eye lid twitching (sometimes my chin too)
Tingling finger tips
Aura migraines (although I think these may be hormonal)

Thank you. I joined that yesterday.

My ferritin was at 3 for over 8 years, my GP did nothing about it. I ended up needing iron infusions in the end but that was only because my gynaecologist arranged it as I needed surgery.

Are you taking a regular iron supplement? Unless they've resolved the cause of the low iron stores it's likely to drop again even if you have had an infusion. I take spatone daily (double dose when I'm on my period) and that seems to be sufficient to keep my levels up at a reasonable level and it's gentler on digestive systems than the tablets.

Your GP can test for VitB levels. If you are worried I'd ask them to do that. You could just start taking a supplement, but there are side effects to too much vitamin B so it's worth checking your levels first.

PS - I had many of the same symptoms as you but I also had very low ferritin levels so I don't know if it's the iron, the vit B (or the vitamin D) that has helped. I suspect it's a combination of them all.

DH has low B12 and lots of the symptoms you describe but he’s also recently diagnosed diabetic so it’s impossible to know what symptoms are caused by what, really.

I know personally I feel better when I take regular B12 and Vit D supplements.

I had iron infusions in 2022 followed by a uterine ablation a month later (very heavy periods being the cause of my deficiency). I was advised not to take any form of iron now that I no longer bleed but to just insure by diet is iron rich.

I have been tested for B12 and it is within NHS lab range but my folate is low (although no range given so GP has ignored this). Most people on the vitamin B12 deficiency support groups tell me low folate will often produce a false higher B12 reading and the NHS is very behind on B12 research. I am also told B12 supplements are useless and injections are needed for full recovery.

I was told by the president of the B12 society (the lovely lady I spoke with yesterday) to get my transferrin sats taken and that will give some answers, so that's what I am going to try next.

Did you have the active B12 test or just the standard B12 test?

I imagine it was the standard B12 one as it just says serum B12.

Omg. I literally came on to post the exact same thing. I had blood tests yesterday and my results came back at 109 Ng/L for VB12.

I had a missed call from my GP at 9.20pm last night (I was asleep) and then a text at 8.30 this morning saying an appointment has been made for me next Tuesday to discuss my results but doesn't specify that particular result.

I maybe did the wrong thing and googled and it seems incredibly low.

I've been feeling awful the last couple of months and thought I was hitting menopause which was why the bloods were ordered in the first place.

In experience are my results ridiculously low or just normal low?

Tia 🙂

From everything I've read about B12 that does appear quite low, my friend's levels were similar and she qualified for B12 jabs via the NHS.

I experienced similar symptoms but others too. V12 test normal. I did a lot of research, join the FB group (think you might be talking about Pat) and decided to self inject.

This was 10 years ago. To be fair, it all started at the same time as the menopause and realised that a number of symptoms were caused by anxiety.

However, one symptom is characteristic fir me and that's breathlessness. After about 10 days, I start to get really breathless doing the exact same walk as I do regularly. 2 days after the injection and I can do it running.

I hope you get answers/help about the VitB issue, but if you're getting bloods taken I'd ask them to check your Ferritin levels too.

My ferritin was 3 for many years, it's currently 60.

Around a year ago I have various symptoms -

Vibrations in right foot that were so irritating I struggled to get to sleep at night
(combined with tinnitus, but that started after an ear infection so unrelated)
Numbness in foot
Eyelid heaviness/droop
Ice pick headaches
Short/stabbing pains in groin, bingo wings, thighs, scalp, breasts
Warm hands/feet
Off balance
etc

I had bloods at GP - B12 Serum, Iron, Vit D, Folate and all came back fine and GP helpfully diagnosed as "we all have niggles as we get older" and wasn't interested in checking further such as B12 Active as my B12 Serum was fine 😡

Everything I looked at lead back to B12, especially as I had a long history of PPI (8 years omeprazole use) and signs of magnesium deficiency (nightly leg cramps) too.

I got a bit sucked into the social media groups saying "treat the symptoms", and ended up giving self injecting B12 a go as thought no harm - it resolved the vibrations/numbness/stabbing pains etc.

But I did it without blood tests first, which in hindsight I regret. I am now 2 years off PPIs, and stopped injecting and taking supplements 8 weeks ago. I normally get symptoms back around 12 weeks, I am hoping to get to 4 months without supplements then blood test privately (IF, MMA, Active B12, Iron, Folate etc) and see what is going on now.

Being dependent on getting B12 ampoules from Germany and a reliance on self injecting long term concerns me so I would like some clarity if I need to and try to get some medical oversight.

Can I ask who you use for your private blood tests? I feel that I may need to go down this route.

@Coffeeisnotmycupoftea I haven't yet, but considering Medichecks.

They do a Pernicious Anaemia test which includes most of the B12 and related tests at £280 😮, I think I read somewhere there are 10%-20% off codes sometimes in the B12 forums.

There are other tests on the site but they don't have the IF and MMA tests.

From what I read you should really be supplement free for 4 months before testing.

On the B12 Wake Up facebook page they have files with other blood testing places and other codes off. I need to do a bit more reading to work out what I am doing, but got another 8 weeks before I hit 16 weeks off injections or supplements.