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.

Hi,

Apologies if anybody has already asked and I’ve missed it, but has your GP checked your thyroid function? I have had 3 monthly B12 injections for years, I have a very truculent under active thyroid and when that starts misbehaving, my B12 levels usually plummet at the same time. My GP is keen to stress that quite often there is no underlying cause for low B12 levels, and that some people just don’t absorb it too well intestinally. She hasn’t got a clue why mine seems to dip with my thyroid levels, so if you’ve never had your thyroid checked, it might be worth a mention, as there’s obviously a link in my case.

Did anyone else experience neurological symptoms prior to be treated? I felt faint and dizzy, I got pins and needles in my arms and legs and I couldn’t feel my feet. I was convinced i had MS, so the low B12 diagnosis was actually a relief!

Yes @NosyHamster I was investigated for MS, sent for MRI scans and neurology tests. Scary! I was looking up how to cope. I had pins and needles, electrical feelings all over, and my eyes felt weird!

They said it wasn’t B12 but as it was so near the cut off (151), and I had very low Vitamin D I’m sure it was related now. Which is actually a huge relief as this is fairly easy to remedy. My levels of B12 and Vit D still get quite low but am taking supplements. But then I got kidney stones and a bit worried it was the Vit D! Am 50 so I think a lot of things are occuring in our bodies and they don’t work quite as well, very un medical opinion.

@Lambstails My thyroid function is fine. My poor GP, bless her, tested me for absolutely everything possible. She was adamant how I felt wasn't normal and she wanted to figure it out. I'm so grateful for her persistence - apparently, if you don't treat the B12 deficiency, it can have some quite nasty permanent side effects.

@betwelve I had issues at work. I'm a high performer normally, but I wasn't operating at full power or full speed. I decided to leave and start somewhere new, because whilst I'm mostly recovered now, I don't appreciate the way I was treated when I was ill.

It felt like I was losing my mind, and it was really scary. Makes me dread dementia in my old age.

I put some professional exams on hold as I couldn't cope when I was really ill, but I've since done them now most of my brain function is back. Hold on. Don't rule out that Masters permanently. I promise you, the loading doses and supplements will make a huge difference with enough time.

Does anyone who has low B12 levels also suffer from breathlessness - not wheezing, but air hunger?

I also get quarterly injections, so my levels will be high, but I have unexplained breathlessness, and wonder if it could be related to folate, which as far as I can tell after looking at my last blood counts hasn't been tested.

(I am seeing a pulmonary consultant, but we are going round in circles looking for a cause, and if it could be as simple as this it would be a huge relief)

@ShyMaryEllen I had problems with my heart rate - because of the low B12, blood wasn't pumping around my heart very well, and my heart rate was dangerously high just walking quickly. My friends have stated that I looked like I was dying - I was visibly unwell when exerting myself (and pretty much everything counted as exertion at that point).

My resting heart rate is still a bit higher than it should be for me, but it's now back within normal ranges.

(I have both low B12 and low folate. I wasn't initially tested for the folate or didn't show low folate - that was only picked up after the loading doses of B12.)

@nosunshinewhenshesgone
Thanks. I've ordered some folate to see what happens. If it turns out that that's all it is after three years of tests and worry I will explode. It will be a relief though. I've just come back from the hairdresser, which is a five minute walk (less for a fit person) and I had to stop to catch my breath half way home.

I can't say for sure whether it was the B12 or the folate that did the trick, but my GP reckoned the breathlessness was B12 related.

As well as being breathless, are you still exhausted? I'm wondering if you need more B12 than what you're currently getting. I mean, you could be getting enough to take the edge off, but not enough to ease the other symptoms.

One masks the other - and I can't remember which way round it is

But I had been taking vitB12 and not folic acid and it was only once I was on both that it fixed itself. Years of doing the wrong thing!

But surely testing for folate would have been routine before it got to the stage of a consultant referral? I thought it's standard anyway?

I'm not sure if I wasn't tested for it the first time or if it dropped when I was retested for everything. (The trouble with having suffered from brain fog is it means I'm not the most reliable witness when it comes to the last year or so.) I wasn't flagged as having a folate deficiency when I was diagnosed as having a B12 deficiency. Still, when I was retested, and my B12 levels were artificially high, my folate was very very low.

But as @Fibonacci13 says, the two things are linked. That bit I am sure about.

Apologies if it’s been mentioned, I only skimmed through but OP, do you suffer from heartburn at all? And take rennie/gaviscon etc for it? I was told this can affect b12 absorption.
mine is not so low to need injections just tablets for now but waiting for my follow up results

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

I do have pernicious anaemia so that explains my B12 deficiency😀.

One thing I've learned along the way is that it's fairly common to develop thinning of the stomach lining as we age and this can cause absorption issues. Low B12, folic acid, vitamin d can result from this.

So it's possible OP that while you might be consuming adequate B12 it's just not getting absorbed.

As the doctor said, the treatment is going to be the same regardless of the cause.

They said it wasn’t B12 but as it was so near the cut off (151)

@CherryBlossomAutumn 151 is really quite low. I know they use these ridiculously low cut off points, but when I was diagnosed with pernicious anaemia my B12 was 285. I was also completely asymptomatic.

I am not exhausted other than when my injection is due. I've been back through by bloods results and can't find any mention of folate.

The consultant referral is because of breathlessness which is being treated as asthma or possible pulmonary hypertension. Obviously I very much hope it is not PH, so I may be clutching at straws, but as I know I have trouble absorbing B12 I am happy to try taking folate to see if that improves things.

The problem as I see it is that GPs now refer everything to consultants, and they have their own specialisms. A pulmonary consultant will not be thinking about B12 as he was asked to consider aggravated asthma, and nobody talks to anyone else.

I was diagnosed with low B12 and folate last August. It actually explained a lot of things. I have been so much better since being on B12 and folic acid, my blood test in March this year was normal but I am still taking them. B12 is water soluble so does no harm.

Like you, my diet was good but I think, on the whole, is even better now.

In my case, age was a factor; I am in my early seventies. Apparently, it isn't unusual for 'older' people to have such a deficiency. It doesn't bother me as I am quite well now, previously I felt dreadful a lot of the time and had peripheral neuropathy. Now all I get are some twinges and numbness at night and then not severe or for long.

It sounds to me as though you are doing everything right, op. Alcohol does exacerbate or even cause low B12 and folate which is why your doctor talked about it but it certainly isn't always the case as illustrated by you and me.

You'll be fine. Just keep up your healthy diet. You may think it achieves little but you would notice a big difference if you neglected your diet.

Were you given folic acid to take? I thought I was getting dementia then felt better in 2 weeks of starting these.

You say you have a high RBC? how high? Is it something they are looking into?

Following as I have the same.
Going for neurology's tests and also got arm numbness.
The doc keeps saying eat more iron rich food but like.... I do

it's fairly common to develop thinning of the stomach lining as we age

This started when I was 37, is that really old enough to see such an effect?

You say you have a high RBC? how high? Is it something they are looking into?

Red blood cell count: 5.04
Red blood cell distribution width 13.8 which is just below the upper limit of the range given in brackets

@ShyMaryEllen Do you have a history of asthma already? Have they offered you inhalers?

Yes. I have had asthma for over 20 years - I didn't as a child. And I have three inhalers. I understand why the consultant is looking at that, but it isn't being controlled by inhalers, and I don't wheeze - I don't think the breathlessness is asthma at all.

My folate wasn't tested till v late in the day. And it was only once I started taking both that everything started improving.

Apparently it's called Macrocytic anaemia.

It certainly does make a difference. Both folic acid and B12 are water soluble so they aren't going to harm you if you don't need them, you just excrete the excess.

You are what you eat and what you absorb.

you either aren’t eating what you need or aren’t able to absorb it due to poor gut health

i would wager both.

buy some steak, , chew your food and consider digestive enzymes. Take a decent women’s multi eg Cytoplan or Lamberts.