Unexplained B12/folic deficiency

[betwelve]

I've been to the doctor a month ago because I was having symptoms like extreme fatigue, weakness, brain fog, breathlessness etc. They ran blood tests which showed a bad B12 deficiency and also low folic acid and a high red blood cell count. They asked me questions around my diet, other medications etc.

The thing is, I eat what I consider to be a very balanced and healthy diet. I eat a diet based on fresh vegetables, dairy and beans/lentils. I cook from fresh and snack on fruit, for breakfast I have Greek yoghurt with linseed and frozen berries or kefir. I eat green vegetables every day and I don't overcook them. I don't drink, I don't smoke. I don't eat sugar. But I felt they were suggesting I either drink or have a very poor diet. The local area has people who struggle financially so I expect many/the majority of patients don't have a great diet, but I am lucky to not be in this position.

I've had a blood test for pernicious anaemia which I believe has come back negative because they haven't called me back in.

Poor diet - I disagree
Drinking/drug use - no
Medication - not on any medication
Pernicious anaemia - excluded by blood test

So I feel the B12/folic deficiency is unexplained, whereas the doctor seemed to be taking the position that it was down to poor diet or possible drinking.

I've had the loading B12 injections and now I'll have one every two months indefinitely. I still don't have a great improvement in my symptoms so far, maybe just slight. I still have fatigue and the other symptoms.

I queried an underlying condition and the doctor said it didn't matter because the outcome and treatment (B12 injections) would be the same anyway.

Acc. to google the red blood cell count is normally low with B12 deficiency, but mine is high.

If anyone has any thoughts, I'd welcome them.
Also, I would like to get private blood tests to see how my B12 levels are now that I've had some injections, and some more comprehensive tests just to try and spot anything "off", how long should I leave that?

Thanks.

I eat spinach, rocket, spring greens or kale every day.

Interestingly my B12 was fine when I had folate/vit D deficiency and I have a terrible vegetarian diet mainly as my disability makes it hard for me to prepare meals so rely on microwave stuff and I forget to take any supplements regularly. I only eat eggs or dairly if it's in something else. I drink oat milk in my gallons of tea though which is supplimented with b12 so can only assume that's why it's ok. So I would think its an absorption issue

Exactly this.

Amenorrhoea, but what would be the implication of heavy periods? I've only heard of iron deficiency in relation to heavy periods, nothing to do with B12.

@Bananatoasties Sorry to hear that the microwaved stuff is impacting you. I had a vitamin D deficiency which I use a spray for now. I'm forgetful too and the spray made it easier somehow: "see spray => spray in mouth" was easier for me to manage somehow.

Sometimes it’s just one of those things. When I was vegetarian I developed low B12 despite eating plentiful eggs and dairy every day, blood tests didn’t show pernicious anaemia or coeliac. I went pescatarian, no improvement. Then we thought maybe lactose intolerance was stopping absorption so I went vegan and started taking a daily B supplement (something like 1000% of the RDA) but still can’t absorb it so just have the injections now.

I had low ferritin and folate for years. I ate lots of cauliflower and everything else that contains folate to try and get it up. Turns out l have Coeliac disease, results all fine now and l don't eat much cauliflower now. I can't remember what my B12 level was though.

are you taking folic acid now too to counter the folate deficiency?

I'm not a vegetarian and I have exactly the same problem as you. I have low B12 and low folate and high MCV I think it's called.

Mine wasn't fixed by the Vitb12 but is improving with me taking both folic acid and vitB12. Just taking one didn't work - I had to take both together.

They have no idea why mine is like this. I don't have pernicious anaemia, I'm not a coeliac, I still have periods (age 50) but they aren't heavy anymore as I've had an ablation. They asked a few questions, did a few tests but it's basically been labelled 'unexplained'. I have a good diet and eat more than enough meat and green leafy vegetables. I can't tolerate milk much so don't have a lot of dairy but other than that, my diet is fine, weight is fine.

They tested my liver and that was ok too so they ruled out drinking causes (I hardly drink anyway).

I did go and see someone to do a full health check after this was found but they didn't find anything either. So I'm guessing it is just one of those things.

I had low-ish B12 levels 18 months or so ago, and was getting some of the typical symptoms. Like you, I assumed I was getting enough B12 in my diet, because I ate meat and eggs a few times a week. I was worried that perhaps I had a malabsorption condition, so I started taking B12 supplements and eating lots of liver. A few months later my levels had shot up.

I think some people must need a lot of protein to be sufficiently nourished. I have a large frame and am muscly, so I probably need more meat, fish or eggs than a smaller woman. I was trying to be "good" and cut down on meat, but I eat more of these things now with complete impunity.

@GeraltsBathtub That's interesting, thanks. It's puzzling to be shovelling down all this dairy/eggs and then be told it's done nothing, isn't it?

Yes, it does seem I'll just have to settle for injections and stop questioning it. Lactose intolerance is an interesting thought and completely in the other direction re:dairy. I don't know how they diagnose that, though.

Another question: why do they just test B12 and folic acid and focus on treating those? If someone truly had a poor diet or absorption issues, wouldn't there be deficiencies of other vitamins and minerals to address? I know they do routinely test iron and vitamin D, but what about all the others?

Im B12 deficient and eat masses of meat and dairy which confused the doctors no end. However, I do have IBS which they think may be the cause of my lack of intrinsic factor.

I have very low Vitamin D and low Vitamin B12 (151 - which the GP didn’t even mention - as it didn’t ‘score’ at 150 which is the cut off!).

I have no idea why but it did seem to go awry at perimenopause. Hormones and levels of minerals/vitamins in our body are more linked than we think.

I also think it can be quite complex - they do iron, Vit Bs etc as these are indicators of a lot of things and can both also be treated. Other vitamins for example Vit C isn’t stored in the body. So it’s not as easy as being able to test accurately for every vitamin and mineral. Also, some vitamins and minerals may spike during the day or week so a one off might not be accurate. And some can be dodgy to supplement because there are effects of over doing it.

So that’s why I think they just narrow it down to a few that are important, can be low and can be treated.

You said you are on B12 injections but how much folate are you taking? You should be on 5mg a day if you are deficient.

I had low folate after having covid (infections can sometimes cause some vitamin levels to lower).

FeigningConcern - it's so interesting you say that. I had the strong feeling it was Covid that had caused my B12 and folate deficieincies.

I was diagnosed low B12 & folate last year after similar symptoms to OP - given daily B12 for three months then retested, at which point GP said levels were back to normal & I'm to continue with daily B12 indefinitely. Various blood tests had been done so I assume it's the same thing as NosyHamster - just one of those things that some of us are predisposed to? My symptoms definitely improved after a couple of months of taking B12 - they haven't gone away, but they're much more manageable now.

OP, if you don't think you're eating enough to have 2 or 3 portions of dairy a day maybe you're not eating enough in general and that's why you're low in some nutrients? I'm vegetarian and a little bit underweight but easily eat enough dairy – a few cups of tea or coffee with milk each day, some grated cheddar or grilled halloumi for example with lunch/dinner, some natural yoghurt for breakfast some days. A portion of dairy is pretty small – half a pint of milk, a small yoghurt, a matchbox sized piece of cheese. Plus a few eggs a week and the odd portion of fortified plant milk or breakfast cereal. I also take a multivitamin that contains B12 and folate so I'm consuming plenty of B12 yet my levels were still low. Sometimes you don't find a reason!

@downintheweeds were you taking b12 tablets or having injections?

Oh, and butter. We only use real butter (no spreads/margarine etc.) and if I have toast I have a LOT of butter on it. Butter in cooking sometimes too. Vegan sources of B12 like seaweed and yeast extract apparently contain a form of B12 that can't be absorbed properly so they're not helpful.

Low B12 and folate crew gathered here! Looks likes there's loads of us.

@Frankley Turns out l have Coeliac disease
Sorry to hear that, although from what I hear the sooner you know the better so you can take action on eliminating gluten. Yes, this has been raised and I think I've been tested. Overall the malabsorption/digestive issues seem to be the only common possibility that is left (though there's a few outliers like the one about working with a specific gas mentioned above).

@CherryBlossomAutumn low Vitamin B12 (151 - which the GP didn’t even mention - as it didn’t ‘score’ at 150 which is the cut off!).

My results just say > [less than- can't find the symbol] 150, not sure what that means exactly.

@FeigningConcern You said you are on B12 injections but how much folate are you taking? You should be on 5mg a day if you are deficient.

Thanks for highlighting that! I was prescribed it but thought it might be cheaper to buy it as I pay for prescriptions, but when I went to the vitamins section of the supermarket I realised I had no idea of the dose so didn't buy it. I'll get on that right away, even though my loading doses are finished now.

@BlackInk A portion of dairy is pretty small – half a pint of milk, a small yoghurt, a matchbox sized piece of cheese.

Thanks, I didn't realise a "portion" is so small, so I may be meeting that. My intake sounds pretty similar to yours tbh.

Vegan sources of B12 like seaweed and yeast extract apparently contain a form of B12 that can't be absorbed properly so they're not helpful.

Oh, I didn't realise this! I was thinking of eating a sheet of nori every day. Looks like that won't be effective, then.

Question for people on permanent B12 injections: do you still try and make big efforts to increase your dietary intake or do you just say to yourself that the injections are covering it, so there's no need to make an effort any more? I'm asking because I've already made big adjustments to my diet on the back of the first blood test which was pre-pandemic, but I'm now severely deficient anyway. I could just abandon those efforts, i.e. stop eating eggs again because I hate them 😅

Also: did anyone else experience completely missing periods as a result of B12 deficiency? Did they come back after supplementation?

OP... are you me?

I also went to the doctor after I had missing periods and didn't feel right, and I was diagnosed with low B12 and low folate.

As has been said already, if you've been taking the loading doses recently, your B12 levels will be artificially high. My GP spoke about leaving at least 6 months for a re-test because of that.

I was sent to a dietician, but my diet was ruled OK.

My intrinsic factor is fine.

The conclusion was 'it's just one of those things.'

I did temporarily try eating meat (before I started on the loading doses) and it didn't help, so I'm back to being veggie.

OP, I'm now on supplements only, and my periods are normal again. My energy is finally starting to come back, and most of the brain flog has gone. It does get better. I couldn't believe that during the worst of it, but it does get better.

I didn't realise low B12 was a thing. It is surprisingly common. I wish there was more awareness, or I wouldn't have suffered for so long. I ignored the exhaustion and the brain fog - it was only the period irregularity that prompted me to see someone, as that was a major change in my 'normal' and it stood out to me as something being wrong.

You accept the exhaustion (even though you can barely move) and you assume you're just getting older or stupider. But the missing periods? If you've always been as regular as clockwork, that's what jumps out at you.

PS I've never knowingly had Covid. The first two things my GP asked about were menopause and long Covid. Apparently, a lot of the B12 deficient symptoms are very similar.

@nosunshinewhenshesgone Yes, it does sound almost identical 😀Like you, I tried a dietary change after the first results showing a deficiency pre-pandemic, but it wasn't effective whatsoever because the levels plummeted. Interesting that so many are saying the same thing, that changing their diet wasn't enough. Except for one person who ate liver, which I'm afraid is a step too far for me.

The exhaustion is absolutely astonishing, isn't it? I fully expected to be told I had cancer or something.

Glad to hear your periods are back! Weird to miss them, isn't it? But it tells you everything is OK.

I hope my brain does go back to normal functioning, I've definitely lost several IQ points through this and I didn't really have room to lose them 😅

I mean, jokes aside, I really am significantly less bright these days to the extent that I don't think I could do the Master's I was thinking of doing because I just wouldn't be up to it, which is scary.