B12 deficiency - Can I ask what were your symptoms if you have this or have previously suffered??

[InkyTreasuresbookstore]

Following on from some private blood tests, I may (possibly) have a B12 issue.

I have been suffering from some chronic health issues for many, many years and getting nowhere with the NHS on this and am now looking into paying for a few more tests to know for sure.

I hope that I am no 'barking up the wrong tree' as such but I just wonder what issues you had that lead to you seeking out or discovering you had a B12 deficiency?

Not me personally but a family member - deep cracks in heels and a sore tongue.

I never considered cracked heels to be a symptom? I have a lot of issues with my heels (and sore tongue along with many other symptoms).

Sore tongue, toe nails falling off. Tinnitus. Parts of body going numb. Confusion. Falling over. Crawling feeling on scalp. Tiredness. Low oxygen.

Pins and needles
Exhaustion
Problems with digestion
Brain fog

If you decide to supplement sprays are better than tablets (injections better than sprays)

Exhaustion - I remember being at work and barely able to hold my head up
Forgetfulness/brain fog

I have been experiencing the majority of those issues for quite some time.

I have just sent a MMA urine test out today. I had contacted Dr Klein in Cambridge, he had suggested the MMA test because he feels my recent blood tests may suggest a B12 issue.

So I will await those tests and see what the results suggest.

For those who have managed to raise your levels did you do so with supplements or injections?

If I do have a deficiency I'd be concerned if I'd be able to raise my levels via supplements because my diet is actually really quite high in B12 so not sure why I can absorb it well.

Just extra tired, but I wasn't in the deficient range, more low.

I’m sure the nhs b12 levels aren’t what they should be for women, it’s worth checking what your levels are against other guidelines (not just the nhs one). Mine came back boarderline so the nhs wouldn’t do anything. I paid for a private injection at a pharmacy and it was around 15-20 pound. Then kept on top of it with tablets.

I was prescribed tablets. I had bloods done a couple of weeks ago, and my levels are currently okay.

Extreme fatigue
Brain fog
Forgetfulness - would forget someone's name mid conversation despite knowing them for years.
Tingling and numbness in hands
Brittle nails

Initially went to the GP because I thought I had early onset Alzheimers (lost DBro to that horrible disease) . GP was brilliant - she said low B12 was not a diagnosis but a symptom. Eventually diagnosed with coeliac disease.

My GP will only check Serum B12 which is in the grey area, I paid for Active B12 to be tested and that’s low but GP will only test Serum, she also won’t test MMA so I’ve had to do that privately too.

If that comes back out of range I’ll have to get some private clinical advice as to which would be the best way to administer the B12. If it’s injections I’ll have to self inject as I can’t afford regular private B12 jabs.

That’s good to know as I’d prefer to take a supplement than injections.

I had a B12 deficiency along with vitamin D, prescribed vitamin D supplements and purchased over the counter vitamin B12 supplements. I found once my vitamin D was at the right levels my B12 tests started to improve. I also had an iron deficiency and took liquid supplements for this. Took about a year for everything to actually feel the difference.

I too have all of those symptoms and worry so much about dementia, I care for my mum, she has advanced Alzheimer’s (so sorry you lost your brother, it’s an evil disease).

I have gut issues and SIBO and wonder if they may be contributing to my low B12 (all other gastro tests clear).

That’s interesting. My vitamin d levels are fine according to my GP but they are on the lower side so I’ve started supplementing those.

Hair thinning, irritability and irrationality angry.

Yes I think it could be an absorption issue. The supplement I took was 40,000% of the RDA which should mean at least some gets through. I also have stomach issues, I have had loads of different tests and nothing comes up so I think it's probably IBS.

Totally exhasted
brain fog
forgetful
air hunger
sore feet
felt like my limbs were full of lead

Am sure there was more, but it’s over a decade since I was diagnosed.

Don’t take any supplements now, as they will skew any further tests. If possible, I’d also get them to test for anaemia, size/shape of your blood cells. My low B12 was down to pernicious anaemia (have a look at the website for the Pernicious Anaemia Society for more info). If this turns out to be the reason for your low B12 then tablets won’t do you any good as you won’t be able to absorb via your stomach. I now have injections every 10 weeks for life (supposed to be every 12 weeks, but my surgery/nurse amended the frequency).

Dr Klein advised to hold off taking any b12 or folate until I’ve finished testing. I was anaemic for decades but have that sorted now although I now have high iron saturation but GP isn’t bothered about that.

A psychotic episode and no I’m not joking

@InkyTreasuresbookstore do you take any PPIs for your stomach issues?
Lansoprazole, Omeprazole & the like are known for preventing B12 absorption - they’re responsible for my v low levels.

Cuts at the side of my mouth just before my injection is due. I have injections due to absorption issues (inflammation in terminal ileum due to Crohn’s) When my very first B12 result came back so low (before diagnosis) they said unless I was a vegan it was almost impossible for my diet to have caused this, it’s not being absorbed properly.

I had severe "lightning bolt" spasms in my left side (just below my breast) that were excruciating. They struck randomly and left me doubling over each time I felt one. I went to A&E three times, with no relief. Over the course of three weeks I had an x-ray, a CT scan (with dye), an MRI, and an ultraound. All texts found nothing that could be causing those pains.

Most days I was in tears. I was afraid to do normal things like drive because I didn't know when the bolt would hit. I walked doubled over, clutching my side. It was awful.

Finally, at a follow-up visit with one of the locum GPs, she suggested it could be a mineral deficiency (she had suspected magnesium). She tested me for all vitamins and minerals. Results showed that my B12 was dangerously low, and she gave me an immediate injection. By the end of that day, the bolts had stopped completely. I received 5 more injections over the next 10-day period, and I was prescribed a B12 supplement.

I saw a PP comment on omeprazole - my first A&E doctor prescribed that for me, thinking my issue could have been stomach-related. That was a bad mistake because the omeprazole actually depleted my B12 stores further. I'll never take that again.

Good luck, OP.

My b12 level was 17.
For weeks I was getting more and more ill.
I couldn't hold a conversation, I could hear words but not understand sentences. I couldn't recognise faces or remember names. I couldn't grip anything with my hands and I had pins and needles in my fingers.
I was so tired it was unreal.
It turns out I was coeliac and was not absorbing any b12. After a course of b12 injections and a gluten free diet I am 100% better but it took a good 6 months before I started feeling myself again.