Folic acid deficiency

[Haydux]

Hi guys, for the past 2 weeks I’ve felt super dizzy, eye sites wary and hard to focus, out of it and weak. Did a blood test and it came back as folic acid deficiency. Anyone else experience these symptoms before? It’s very scary it causes panic attacks 😭

[Nackapan]

Yes. My folate always been okay.

Waiting for blood results

Last done early February so will see.

They are b12 deficiency symptoms too.

[Sarisoo]

Yes, I have had a folic acid deficiency. It can feel terrible. Can adversely affect mental health symptoms. Plus having low folate will adversely affect your B12 uptake..so need to always take folate with B12 injections as they are vital to each other.

[Av42]

Most definitely, unfortunately I waited 2 months before taking myself to gp as thought I’d developed severe anxiety, lost a stone and was a shaky mess . Got diagnosed with both folate deficiency and b12 at the same time .

[Haydux in reply to Av42]

Have you recovered now? If so how long did it take for you to start feeling better?

[Loola88 in reply to Haydux]

I was exactly the same! I waited 6 months as I was paranoid I had bad MS at the age of 29. I was a nervous wreck and skinny as a rake And has been losing clumps of hair! My journey wasn’t a simple get better as every time we balanced one thing another would drop, as soon as folate was sorted iron plummeted to 7, then once that was on the up vitamin D dropped to 19. But I’m nearly 3 years diagnosed and I feel like a completely different person. Some people have long complicated journeys and some people gradually start to feel better over time. I hope you feel better super soon xxx

[Av42]

I was prescribed folate from doctor and b12 and anxious feelings went within a month but it did take a while for b12 to kick in . Apart from having to go an extra month this time before getting injection due to covid I manage very well on 3 monthly injection and multivitamin with recommended daily folate included .

[Hidden]

I had a problem with low folic acid levels just after starting with B12 injections. It was as if I was back to where I had been before them. A course of high strength tablets sorted it and now I take daily maintenance dose.

[Haydux in reply to Hidden]

How long did it take for it to all kick in and feel better? Recently started on high dose of folic acid and dizziness is better but still quite shaky etc

[Hidden in reply to Haydux]

I can’t really remember. I think it might have been up to a month but can’t be sure. I still take my daily dose though now.

The problem with all this, and it is clear from posts on this forum, is that some people get all sorts of aches and pains and it is very easy to put those down to our basic B12 deficiency problem. I am one of them and this is confirmed as being peripheral, neuropathy, by a neurologist, and she wants to do nerve biopsy to find out exactly what is going on.

In the results of her investigation of the blood sample after her consultation there appeared some substances which are now under further investigation. The haematologist has determined it is MGUS, (Monoclonal Gammopathy of undetermined significance). This is benign possibility as the other is Multiple Myeloma. No cure, no treatment. Fatigue is one of the problems associated and it fits with how I have been over the past few months. So now I will be having the phlebotomists trying to get blood every month or so from now on.

They still haven’t come up with any effective treatment for the peripheral neuropathy though so I shall continue with my B12 injections as required despite the neurologists scepticism at its effectivity. She suffers from one serious defect in that she is arguing with the Worlds Leading Authority on the subject - ME. She will never, ever, know everything about me as she isn’t inside my body and doesn’t know what is going on, she is working on hearsay and that isn’t exactly reliable.

All you can do is keep telling the doctors what is happening and get upset at any who doubt what you are telling them. You do eventually find one with some curiosity still live in them who will find out what you need, but it takes time.

I find codeine very useful.

[fbirder in reply to Hidden]

Are the B12 injections actually helping the neuropathy? If not, then the neurologist is probably right.

My neurologist wasn't inside my body. But he used the various tests he carried out to diagnose me. He said it wasn't because of B12 (which I was fairly certain of already). He told me that, if his diagnosis was correct, the neuropathy wouldn't spread up my legs and hands. He said it would stay at its current extent with very, very slow degradation over decades.

That was four years ago. Everything he predicted has come to pass.

Despite him not being inside my body, he knew much, much more about what was wrong with me than I was.

[Hidden in reply to fbirder]

I am sure they do but it just gets up my nose when they say the effect I get, which is relief from the neuropathy for several days is not actually happening. That is just plain rude.

I have been the victim of several misdiagnoses over the past few years because ‘that shouldn’t happen’ only to find that another doctor finds that it does after long periods of mistreatment and the problem gets cured. There is far too much tick sheet medicine these days and following guidelines for fear of being censured.

[e66--]

Hi there. I just want to add that I've had the identical symptoms the past 2weeks with extreme exhaustion and horrid anxiety and weird sleepiness. I thought I had some kind of viral infection. Hope we feel better soon, tired of feeling like a zombie. Best regards.

[Haydux in reply to e66--]

Hi, I was the exact same and thought I had a viral infection too until it didn’t go away then I found out by GP it was low folic acid! Definitely get checked for that! It’s horrible to live with!

[e66-- in reply to Haydux]

Take my folic acid every day without fail along with regular injections. Still feeling like Im dragging my knackered body around and rather weird in the brain cells! Also watering eyes and intermittent calf aches. Apart from that I am fine!!

Hope you feel better soon. We somehow have to find something positive in the day! Best wishes.

[Haydux in reply to e66--]

Hey, I just got prescribed a high dose of folic acid and also on b12 drops. Did you find the folic acid gives you really bad indigestion?

[Dewy9698]

Hi

Yeah, I had folate deficiency at the same time as my Pernicious Anaemia was picked up. The two seem to go hand in hand. It was treated at the time, and now varies between being ok and borderline but never been actually deficient again. The symptoms, I'll agree, can be very scary though, but they'll sort themselves out once you've been treated. 🤞😊

[fbirder in reply to Dewy9698]

Yup, PA and folate deficiency are two results of the underlying problem - autoimmune gastritis.

That kills cells in your stomach that have two jobs - make Intrinsic Factor and make stomach acid.

IF is needed to absorb B12. WIthout IF you cannot absorb any B12 from the gut - you have PA.

The lack of stomach acid causes a problem because the folate in food is bound to several molecules of glutamic acid. They need to be removed by pancreatic proteases before the folate can be absorbed. And pancreatic proteases need stomach acid to activate them. No acid, no proteases, no absorbable folate. Luckily folate in pills doesn't come with the glutamic acid baggage, so is absorbed even without stomach acid.

[Haydux in reply to fbirder]

Hi, can the folic acid cause bad indigestion? Currently on a high dose for 2 weeks to speed it up and have now been experiencing really bad indigestion and acid reflux. Folic acid Pills have definitely helped the other symptoms though!

[fbirder in reply to Haydux]

I've heard of some people saying that they have an adverse reaction to high dose folic acid.