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?

I can quite believe it.
My mental health is rock bottom.

No, I don't take anything. I'm not sure what would have lead to a deficiency of I do have one other than my gut issues and maybe some kind of absorbency issue?

This
also tinnitus
numbness
breathlessness

That's what I've read. I eat meat with virtually every meal so I get a large amount of B12 going into my body so not sure why my numbers are not higher.

Thank you. That all sounds like it was a very frightening time for you. Good to hear you got it resolved.

I’d strongly recommend reading up on pernicious anaemia, you could eat a whole cow and still not get what you need if your body isn’t producing what is needed to extract the required B12 from what you eat.

I was diagnosed with this about 12 years ago. My symptoms were fatigued like I’ve never known in my life, brain fog and sore tongue

Fatigue, flaking nails, dry hair, brain fog. All fixed by a 1000mcg daily supplement.

My level was 171 in a recent FBC test, the only thing that was on the low side. It's in the normal range but still a bit low I think?

Do you know what the range is that the lab uses? Annoyingly, the ranges vary over different health authorities, but that’s a whole separate moan!

if I recall correctly, B12 is one of the few vitamins that you can’t “overdose” on. So you could safely supplement if you wanted to, to bring it to the mid/upper numbers of the range. Any excess B12 is excreted when you pee, you don’t need to worry re overloading on it.

145 to 569 pmol/L, so definitely at the low end of ok. It reminded me to take my vitamins anyway and see if that makes a difference. Also it was 239 five years ago.

I won’t be rude and ask your age! But levels can definitely start to decrease as you get older, hopefully taking a daily B12 supplement will improve things for you.

I'm very interested in this as I have a family member diagnosed with ME but we feel there's definitely more to it. The nhs literally just did bloods a few times waited a few months then declared it must be ME/CFS. Could lack of b12/pernicious anaemia be an issue here?

No it's fine I'm 51. Thank you for your advice. I've been having a little brain fog (and only that really) and put it down to menopause as I've not had a period for nearly two years now, but I also noticed it seemed to improve when I remembered to take my supplements. Then reading this thread I realised perhaps my B12 is a little on the low side, so it could be that.

Could well be. I have also been diagnosed with CFS, but that’s after years of being on lifelong treatment for Hashimotos and pernicious anaemia. I feel shite enough as it is, let alone how I’d be feeling if those two conditions weren’t being treated. The GP should be ruling out absolutely everything else before landing on CFS.

get an appointment with Andrew klein in Cambridge to look at pernicious anaemia, if you have that he will recommmend self injection & you just buy them online and do EOD until symptoms improve. Is v easy to self inject. Also remembering to take the co factors or you feel worse. Read everything from the B12 society. There's some learning to be done, but it's quite easy when you get your head around it.

Exhaustion, the can't walk up the stairs after you've just had 8 hours sleep kind.
Brain fog, literally forgetting words and what you were saying mid sentence. Feeling very fuzzy headed also.
Pins and needles
Low immune system, so getting colds and taking a while to recover, more frequent cold sores.

I had pernicious anemia, which they have to sort out before the b12. I also appear to drink the stuff up, and despite injections every 8 weeks, I've had to have the loading dose 3 times to get my levels back up to a base level.

I was recommended him on here a few months ago. I emailed him with my results last week and he said it's highly likely I have a deficiency and suggested I did an at home MMA urine test, I did this yesterday.

He's told me to email back the results when they return to me so fingers crossed he can help. He seems to be highly regarded on the subject.

I have all of those symptoms too. Hopefully I can get to the bottom off things soon, very festive up feeling so crappy all the time.

Are you feeling better now?

I had pain in my feet that I thought was arthritis which turned to numbness which travelled up my legs, got fobbed off by my GP for 9 months until I demanded a private referral to a neurologist who at first told me he thought I had MS but after head, neck & spine MRI scans & blood tests decided it was B12 deficiency, by this stage I was unable to walk properly, was on crutches & even after loading doses & me buying my own B12 & self injecting daily for a year saw no improvement. I've had nerve conduction studies & the damage is irreversible, I'm now housebound, haven't driven for 6 years, suffer falls, I'm so angry with my GP for fobbing me off, he has cost me my life.

My level was less than 100, they aren't supposed to retest according to NICE guidelines.

@InkyTreasuresbookstore It's cyclical. My symptoms are never as bad, but you do get reoccurrence of the symptoms, especially if you're delayed with the jabs.
And, for me, it's not a case of you have the jab = you feel better. It's a case of, you have the jab, and 2 weeks later realise that although you're still tired, you haven't had to put your head on the desk at work and literally power nap for 5 minutes to get through the afternoon. You just feel less bad.

It also goes in yearly cycles for me. I've realised that most years in October for the last 10-15 years, Ive ended up in the doctor's getting blood tests, because the fatigue is debilitating again. These normally end up with another cycle of iron, low(ish) white blood count to be retested in a month, and told that the next step is a referral for chronic fatigue, which will get refused anyway because I'm holding down a job and living a life.
Unsure why this happens every year- could be a crash after a summer of juggling childcare, the drop in vitamin d after the summer months, SAD, new viral strains around. But this year I'm trying to counteract by adding iron and vitamin d supplements anyway, not booking myself in for too much, and trying to embrace early nights.

If brain fog is a symptom for you, I've found CoQ10 helps me at a decent dose, alongside liquid iron.

@Nat6999 that is terrible - so sorry to read your story.

Some GPs are shit. I have sero negative rheumatoid arthritis, but no diagnosis for around a decade 😟- not fun.

I'm so sorry this has happend to you, I have been reading so many similar personal accounts of people ending up with permanent nerve damage, some in wheelchairs.

How can something so easily rectified at an early stage be dismissed for years? Then again I was left with ferritin levels below 3 for over 8 years, so sadly I do believe it.

Thank you, I will try that.