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.

It's a vegetarian diet so that's your answer.

The biggest source of B12 and folate is meat. Without that you are going to have to work really hard to have enough.

Google MTHFR - Ben Lynch is great on this.

I have this and it was sorted with a round of high grade supplements / jabs. Until of course the next year’s blood test. I eat meat too, plus broccoli most days. Doc not that interested in working out why but with patch up the result.

@AnnaMagnani

Thanks, but it's not a vegan diet and since finding low B12 levels a few years ago I've been really conscious to include things like kefir and eggs to up my levels. Is that not enough?

I though folate came from green veg, I'm going to have to re-read more carefully, honestly difficult at the moment with the B12 brain fog!

Do you have heavy periods?

Also, I knew about the low folate as well since a test before the pandemic, so I have been sooo careful to eat my greens raw or very lightly cooked. And I have them every day, most people don't do that 😩All my measures seem to have been for nothing!

@Vermin Yes, they're not interested. How bizarre for you, though, when you eat meat and broccoli.

@Paq amenorrhoea, was another reason for the doctor's visit. I thought it was menopause, but also excluded via blood test (apparently).

Maybe just take iron supplements. Take them alongside vitamin C and avoid caffeine. If you are generally healthy then don't worry too much about the cause.

Are you underweight?

My iron levels are generally the low side of normal, it's just how my body runs.

I have low b12 diagnosed in 2019 and have 3 monthly injections since then. I don't specifically know the cause of mine either but suspect it was when I cut out diary and whole food groups. I also have a bad stomach which can impact this.

Once you start regular injections they should test your b12 again and I would ask them about the red blood cells.

Do you happen to work anywhere that entonox is used?

Hi OP, there are various sources online where you can check the B12 content of different foods and work out whether you're eating enough. As a vegetarian myself and with low B12 I've checked and consume plenty – as a rough guide I have 2 or 3 portions of dairy a day and a few eggs a week. There's also added B12 in some breakfast cereals and plant milks, although I don't often eat a lot of these. There's no B12 in vegetables, pulses etc, although they're a good source of folate.
My pernicious anaemia test came back negative too (it's called intrinsic factor, and is not always positive with PA anyway). After some to-ing and fro-ing with my GP I am on B12 injections indefinitely as they eventually agreed that my deficiency wasn't linked to diet so I must have trouble absorbing B12 through my stomach – I tried high-strength oral supplements but my B12 levels actually went down!

There are a few possible reasons for your levels to be low despite a diet rich in b12 and b9
Do you take medications? Especially anti-acids or antacidsor proton pump inhibitors (used to reduce stomach acid) . Or metformin?
Do you drink a lot?
Do you have bowel issues or pancreas issues? Is there a medical reason you follow a (great) vegetarian diet?

Why don't you have your periods? Do you have PCOS? This can interfere with absorption.

I was diagnosed with low B12 several year ago, I don't have pernicioius anemia, and I'm not vegetarian. My GP came to the conclusion I'm just one of those people who don't absorb B12 very well, so I now have regular injections and I'm fine.

PS - its not usually advised to be retested once you've started injections; once you're having injections your B12 will be high, but that's due to the injections, if that makes sense.

It took me about 5 months to properly recover once I started treatment, and i was rather up and down for the first few months, but I'm fine now. I just ensure I keep up with my injections.

@Miscellaneousme No, but that's a very interesting call and exactly the kind of thing I'm interested in hearing about just to get to the bottom of this.

@Fofftwenty21 Did you resume eating dairy, out of interest?

@BlackInk I have had my eye on my intake for a few years now, so I thought I was doing well. But I will definitely check the precise amounts as you say because I suppose it's like when you're trying to lose weight, sometimes you calorie count and realise things are not what you thought. Dairy three times a day would be a bit much for me (not counting milk in hot drinks), purely because I don't think I eat enough to do that.

@MatchaTea No medications, absolutely no drinking (religion), no bowel symptoms or known condition. Just vegetarian as brought up that way from being a child.

My problems started in perimenopause. It messes with your gut and causes absorption issues.

It's also possible to become celiac in your 40s.

But be aware you may never get to the bottom of this - I felt like you when I was diagnosed OP, but sometimes people are low in B12, just because they are!

@NosyHamster Thanks for the info on re-testing, I was wondering where the injections would leave me. And interesting to hear how long it took you to recover, my impression from the nurses and the GP is that I should be fine now, a few weeks on, whereas your experience is indicating it could be longer. That corresponds with what I'm going through.

Lots of people posting here with unexplained B12 deficiencies! If it's that common maybe that's why the doctor doesn't seem worried.

Do you low carb at all? Less than 75g carb in a day regularly? Under 1000-1200 calories regularly? I did Fast800 for 4-6 weeks and ended up diagnosed with folic acid deficiency. I wasn't coming to it from a great diet to be honest. I felt absolutely awful, it was actually palpitations that made me see the GP but ah the brain fog. I did feel better after a couple of week of eating more and taking folic acid tablets. You may just need to eat more at certain times of the month. I do intermittent fasting and higher carb days and that suits me much better.

@MistySkiesAreGone I don't do low carb as a diet plan but I don't eat carbs like pasta or bread because type 2 diabetes runs in the family so I try to avoid blood sugar spikes. I thought folic was coming from green veg, though, so I wasn't worried about not eating bread. Perhaps I need to see a dietician.

Can you get B12 from fish? 🤔

I’m coeliac and had very low B12 levels when I was first diagnosed. Had injections and then a gluten free diet has helped heal my gut so it can absorb B12 from food better. Might be worth getting a coeliac blood test?

Here you go...also chick peas a and kidney beans

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-b/

I’m f you’re veggie, chickpea, cauliflower and spinach curry is an absolute folate winner!

That's a great suggestion but I eat things like that all the time already. I eat a dark green leafy vegetable every day. I'm always eating chickpeas, lentils and other legumes. That's why I feel it's unexplained.