Vitamin B12 deficiency

[skinnyamericano]

I’ve just found out that I’m deficient in Vitamin B12, and am likely to have been so for at least 5 years.

It was picked up in a blood test then, but I wasn’t told. I’ve had virtually every symptom going, but the GP never repeated the test, until a nurse picked up on it when I was there for something else.

I’m freaking out now - stupidly Googled it and have read about permanent damage. Anybody got any (positive!) advice please?

What are your levels? Mine was at 200 something for years and I’ve come back ok from it

Thank you - mine is 180, so not massively different. Glad to hear you’re ok. Thanks again.

I think it can depend on age. My lowest recorded level was 76 and have thankfully no permanent damage. I'm on 8 weekly injections and folate supplements. I'm in my mid-twenties.

My mum on the other hand had a level of 140 and sadly has some persisting symptoms 7 months later. Neuro thinks it will resolve but it's no dead cert.

Have you had loading doses and are you on a regular injection regime? Is your folate level okay?

I’ve only just found out the results, so waiting for an appointment now.

Glad to hear you’re ok syne, hope your Mum gets there too. I’m pretty sure my numbness/pins and needles are here to stay 🙁

I’m early 40s

I’m early 40s too op. I think it’s ok to come back from at this age

I have pernicious anaemia, I suffered with chronic fatigue, but was diagnosed due to a sore tongue!

I have some numbness in one big toe, but am assured that this is not a symptom as it would be both feet the same. It does seem to be slowly improving, but has been numb for a few years.

I also have 8 weekly injections.

Oh, and I was diagnosed shortly after having DC3 who is almost 9, i’ve just turned 50

I have permanent damage from B12 deficiency neuropathy. If you did, you would know.

Make sure you get your loading shots promptly and make sure the underlying cause is identified.

Treatment of low B12 seems to be a total lottery, and some doctors seem to think B12 deficiency doesn't exist.

The normal range in my part of the UK is 180-1000, so at 180 my GP would declare that normal and not consider treatment. NICE guidelines state that normal range begins at 200.

Neurological damage from low B12 can be permanent. Make sure you tell your GP about any neurological symptoms you have as the treatment should be different/more intensive.

Do you eat a reasonable diet? B12 is only found in animal products (dairy, eggs, meat, fish) and in some supplemented foods like yeast extract, breakfast cereals and bread. If you are eating a few portions of any of these a day, your low B12 isn't caused by diet and there must be something else going on, most likely an issue with absorbing it.

If caused by poor diet, B12 can be supplemented with tablets. If not, it needs to be injections.

Some common drugs can cause low B12 too - medicines for reflux/indigestion and diabetes for example.

Thanks so much for your replies.

Been back to GP today - trying a course of tablets for B12 and ferritin deficiency, then blood test in 2/3 weeks. She’s going to test for PA and coeliac disease then.

I think that’s a fairly reasonable outcome.

I’ll be surprised if it’s diet -related as I eat everything and am pretty healthy. Not on any medicines either.

Rubber sorry to hear that 😞

Been back to GP today - trying a course of tablets for B12 and ferritin deficiency, then blood test in 2/3 weeks. She’s going to test for PA and coeliac disease then.

I think that’s a fairly reasonable outcome.

Yes, that sounds appropriate. If you're still low on retesting, quote NICE guidelines and insist on injections.

(Thanks it's a bugger. Caused by a GP who noted a low reading, but didn't take any action and didn't tell me.)

Hi @RubberTreePlant

It's really important that your GP doesn't retest your B12 whilst you are taking supplements as it will give you a falsely high reading. You need to be at least 4 months clear of taking supplements (or having injections) before a blood test will give an accurate picture of your body's B12 stores.

NICE guidelines do state that B12 shouldn't be retested once treatment has begun. If your levels are low despite a good diet, then it implies that you have absorption problems. The treatment for this should be B12 injections for life. If you can't absorb B12 from food, you won't be able to absorb it through tablets either.

However, I'm currently battling over this with my GP and getting nowhere. I hope yours is more enlightened!

BI

Thanks again rubber - my GP seems to have done the same. Last test, 5 years ago, was low but I wasn’t told and no repeat tests ordered. I’m feeling quite upset about that as I’ve had symptoms that I’ve been putting down to hay fever/ageing/peri-menopause etc, when I should have been in my prime!

Hi BI sorry you’re in the same boat. I was thinking that my level wouldn’t rise particularly if I wasn’t absorbing it - what do you think?

B12 tablets won't help unless your deficiency is from your diet. If you eat dairy or meat you need injections. If you have any neurological symptoms you need injections every other day until the symptoms resolve. If you are on Facebook this group is really brilliant and knowledgeable. www.facebook.com/groups/PAB12DSupportGroup/

Don't let Dr retest your B12 levels after supplements, you may have higher levels of inactive B12 but this will not help you. Treatment should be based on symptoms once a deficiency has been found.

Interesting thanks ginger. I’m booked in for a retest in 2 weeks. Not quite sure how to extricate myself from that. Perhaps I’ll just go ahead with it and see what the levels are, then have a discussion with GP.

I think if you're taking B12 it might also mess up the PA test too (which is ridiculously unreliable as it is)

Did you get a folate level on your test results too? That can cause same symptoms as low b12, they're closely related

I’ve got a folate test booked in.

Why is the PA test so unreliable?

Thanks for the Facebook link ginger - I’ve joined up!

The Intrinsic Factor test for PA can give a false negative result up to 60 percent of the time, although if it comes back positive that's a definite diagnosis. PA is hard to diagnose, and there can be other problems with absorption that are even harder to diagnose. Basically, if your B12 is low, you have symptoms and eat a reasonable diet it means that you're not able to absorb it through your gut (for whatever reason) and you should be put on regular injections for life without further testing.
Good luck :)

Thanks BI 😊