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Unexplained Vit B12 deficiency - anyone had this?

20 replies

iknowimcoming · 11/05/2023 08:34

I'm 52, recently had blood test for possible under-active thyroid as my weight doesn't seem to tally with my food intake and I have numbness/stiffness in my fingers every morning when I first wake up. Tests came back everything within normal ranges except B12 very low, gp started every other day B12 jabs for 2 weeks and did further blood tests (for intrinsic factor etc) all normal.

Every time I've been for a jab the nurses keep asking if I'm feeling better/less tired? I've said I didn't think I felt particularly tired before but no, not noticed any difference. GP asked if finger numbness has improved - nope. They've said I'll have the jab every 12 weeks now for ever but GP says she doesn't really know why I'm low in B12 and has referred me to a haematologist. Just wondering if anyone else has had this and what to expect next really please?

OP posts:
Skybluepinky · 11/05/2023 08:39

I know lots of women over 45 that are having the B12 jabs so Mayb something to do with peri or menopause?

NHSmummy84 · 11/05/2023 08:51

I have injections too. I'm convinced that mine was caused by having prolonged heartburn.
There are cells in the stomach lining that produce intrinsic factor. The intrinsic factor test only tests for intrinsic factor antibodies, not the actual intrinsic factor.
B12 has a really complicated pathway of absorption and activation in the body. The intrinsic factor antibody test can also be unreliable if antibodies are still low.
Usually the cause is never found, as it's not really important as it doesn't change the treatment plan.

Anetra · 11/05/2023 08:54

Yes I’ve had this and didn’t feel much different after a few weeks of b12 jabs. The improvement for me was more gradual

iknowimcoming · 11/05/2023 09:02

Thanks all - forgot to add that my iron level is within the normal range by 1, presumably I should be taking an iron supplement but I've thought I shouldn't really change anything until after the haematologist does blood tests as it could skew results - I will ask at the telephone consultation which is in 2 weeks or so!

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lndnbrdge91 · 11/05/2023 09:18

I've had low iron the past and take a daily supplement. Nobody said why it was low so sorry not much help! All I know is I feel a lot better when I take my tablets. My iron is now normal range, but not by much at all. I am a similar age to you

lndnbrdge91 · 11/05/2023 09:19

Sorry, age 42...so poss hormonal

iknowimcoming · 11/05/2023 20:58

Bumping for the evening crowd!

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ForeverTired89 · 12/05/2023 21:57

I have low B12 due to Coeliac Disease. But I was also low on iron, folate and vitamin D when diagnosed.

muuummypig · 12/05/2023 22:10

Yes me, early 30s. Been this way since first pregnancy. Low b12, low iron, no cause for it and on horrible tablets for the b12 which I'm hoping I can exchange for an injection because the side effects are horrible!

AuditAngel · 12/05/2023 22:19

I have pernicious anaemia.

You have parietal cells in your stomach lining that release intrinsic factor, that locks on to the B12 in your diet and allows you to absorb the B12.

In pernicious anaemia the parietal cells don’t work, it’s an autoimmune disease. If you have one autoimmune disease, it is likely you will collect more.

I have Pernicious anaemia, psoriasis, Arthritis and I now seem to have Reynaud’s disease.

injections every 12 weeks for maintenance May not be enough. I have them every 8 weeks, the week before it is due my symptoms return, and it takes nearly a week after the injection for me to start to feel better. So I feel rough for 2 weeks out of 8!

the doctor thinks my final pregnancy triggered the Pernicious anaemia.

BarrelOfOtters · 12/05/2023 22:20

I did in my mid 30s, incredibly low b12, but I was really tired with it…..course of injections and I was fine. GP said I’d had the b12 levels of a 90 year old. I take the odd sublingual b12 when I remember but it hasn’t reoccurred and they didn’t know what the cause was.

Plainbobgrandsire · 12/05/2023 22:23

My Dad, his sister and I all have issues with intrinsic factor and we are all low in b12

KatzP · 12/05/2023 22:24

Normal ranges for iron (ferritin being more important) and other vitamins and minerals are based on the range of results from the labs not necessarily linked to an optimal for health level so I'd try to get levels to top end of the range if you can.

Ferritin for example often has a range starting around 15 (varies by lab) but NICE guidelines say below 30 is iron deficiency (even if not with anaemia) and some can be symptomatic at levels below 70 (I think that's right figure could be less).

there is also a lot of interaction between vitamins and minerals so you need optimal levels of folate for the b12 to be used as an example.

things I've read suggest folate should be 20 (ranges often start at 5) and b12 should be 600+ although once having supplements you need active b12 tested instead.

Winter2020 · 12/05/2023 22:28

The sources of B12 are animal products so if you are vegan you won't get natural sources and would have to rely on fortified foods or supplements. If you are vegetarian you might not get enough natural B12 without consciously eating fortified foods or taking a supplement.

GulfCoastBeachGirl · 12/05/2023 22:35

I'm 62, have Pernicious Anemia (Intrinsic Factor Antibodies way, way out of range😕). Never had any symptoms whatsoever, even my B12 wasn't terribly low at 285 when I was diagnosed. Monthly B12 shots recommended, but I stretch that to every other month since the shots make me feel awful for a couple of days.

No idea what caused this; just one of those things🤔I feel perfectly fine, always been active and athletic and certainly no lack of energy!

uggmum · 12/05/2023 22:35

Mine suddenly dropped and so did my Sister's.
I was in my forties.
I started feeling very tired. Had bloods done and was really deficient.

I was borderline for injections so opted for tablets. Was on them for months until my levels went up to a normal
Level.

They haven't dropped since.

sunsetssky · 12/05/2023 22:40

I was tested for B12 recently and the result was 103 which I was told is normal but reading on here its low.
I'm always tired with tingling hands in the morning and night if I wake.

sunsetssky · 12/05/2023 22:40

Folate is 12.9

MeetMyCat · 12/05/2023 23:24

I was mid 40s when I suddenly became very dizzy, faint and tired, and I got numbness and pins/needles. I was diagnosed with low B12, I’m not vegetarian and don’t have pernicious anaemia, so it was a mystery. I had 2 weeks of alternate day injections, this was miraculous, I’ve had 12 weekly injections ever since and feel fine.

iknowimcoming · 12/05/2023 23:41

My b12 was 147, folate 4.7 and ferritin 31, intrinsic factor antibody 1 U/ml. I'm not veggie or vegan. I think GP has referred because my dad had stomach cancer and there are some increased risks with things like Pernicious Anaemia so we'll see I guess. Thanks for all the replies!

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