Hi, I'm new to this forum but have just been diagnosed with low folic acid
.. I’ve just been diagnosed and given meds for 3 months but I’m struggling to understand why as I’ve read it’s mainly down to poor diet and heavy drinking and neither apply to me.
I’m on HRT 100patch and Progesterone. I also take Esomeprazole and was until recently taking 40mg for about 3 months and have now tapered to 20mg. I read that taking PPI’s like esomeprazole can cause low B12 but there’s no mention of low folic acid so wondering is this is menopausal? – have tried to contact GP and all I got back was an NHS link which I could have looked at myself!
I asked about my B12 and they said it was borderline..
I do suffer with health and general anxiety and it seems to have gotten worse over the last few weeks, I have pins and needles especially at night in my hands and usual aches and pains ( I'm 55).. I keep getting an intermittent metallic tingly sensation in my mouth and recently lips which actually makes my hands go cold and tingly which is really unnerving .. Just wondering if anyone has experienced? Pick up my meds today
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Missprettyshoes
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hello, I am assuming your gp has prescribed folic acid as 1x daily, 5mg tablet for the 3 months.
As nackapan post says , this should NOT be taken before B12. It can cause SACD (sub acute combined spinal degeneration), your gp should know this; that folate level can mask B12 deficiency.
Pins and needles are a neurological sign of B12 deficiency; and ppi's in lowering stomach acid can result in B12D/P.A..
NICE treatment for people with neurological involvement: Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
This maintenance dose of 2 months is inadequate for many who require more frequent injections.
I had this. It happened after I started HRT. I also had low normal B12. Also had the metallic taste. I took folic acid for about 6 weeks but felt awful and had to stop. I was retested and my folate was sky high. My GP wouldn’t entertain B12 injections so I got one from a beautician and instantly felt better. I’ve switched to sublingual B12 for now as that seems to work for me at the moment. I think I was on too much oestrogen. I have lowered it and things are slowly settling.
Oh that’s really interesting…. I’m on 100 hrt patch but think that’s ok as had private menopause bloods etc taken last year … in fact she advised to up to 125 but I didn’t
I just really want to know why my folate levels are low as nothing I can think of indicates why they would be
I’d never had it before either, but I’m struggling to maintain folate levels still. I can tell if it’s too low because the metallic taste comes back, but I don’t tolerate supplements at all. If I get the metallic taste I take one folic acid tablet (5mg) and that is usually ok and also up my B12 supplement a bit which seems to manage it but I’ve got loads of symptoms that come and go. If I take too much B12 I can’t sleep. Same problem with any B vitamin complex. I’m not sure whether to stay on HRT or not as the only thing it controls for me are the hot flushes.
Me too ! But I did go cold turkey about a month ago and stopped taking the hrt and I had a permanent head ache and the hot flushes came back with a vengeance
I did the same thing last year. Came off it completely. I actually started to feel better for a while and then felt terrible again so went back on it. It’s a nightmare trying to just feel normal 😩 xx
Hello browny52. I was taking sublingual B12 but found it gave me gastric problems, that I put down to the mannitol in the tablet. Could I ask you the brand of sublingual B12 you take, just in case I have not come across it already. Many thanks.
Oh ok. It's just that the things you mention may suggest thyroid issues. Did you have the correct testing or just the TSH ? I have Hashimotos and a B12 issue due to surgery....
I would be very concerned that you are showing low folate - especially with the fact that your diet is good, my experience of low folate with a good diet has caused numerous problems. I would also worry because when you take the folic acid this will change the results that you get from NHS blood tests. If you can afford it, I would buy an Active B12 test (medi checks and others do these really quickly) and get this done as soon as possible - the GP's won't necessarily listen to that but in the first instance you will know and then everyone can advise on action needed.
At the age of 40, I went to the drs with pins and needles in my hands and was told that my folate was low and my B12 was ok. My diet has always been high in folate but this was never taken into consideration - I was prescribed folic acid supplements. Six months later I couldn’t walk, and was diagnosed with some rare neurological condition and have spent thirteen years on high dose steroids which enabled me to become mobile again. However I had all the symptoms of a B12 deficiency and a family history and an antibody. My daughter went down as severe eight months ago…low folate too. But as she had to see a GP urgently due to her job, she was sent to a private one who used Active B12 and she was very low. Sadly the NHS GP’s didn’t respond and there were substantial delays in her treatment - her amazing consultant told me on Tuesday she was weeks away from permanent serious disability. I have had over the last five months had to come off the steroids which as expected made my Active B12 drop considerably and I started B12 treatment three weeks ago, which is working but will take sometime and I am a little nervous as expected.
I am also at that menopause age, but I will say that currently any symptoms I thought I had disappeared in the first two weeks and mentally I feel like a new woman.
My son has also tested low on folate, his diet is folate rich too….this time there was no hesitation and the B12 for him has been life changing.
Folate and B12 are very linked - I don’t get the biology and neither do many people and it still needs research but if you can test your Active B12 do so.
I grow my own veg (slowly at the mo!) so was mildly insulated to be told to take folic acid supplements. I do have Pernicious Anemia. I only found out yesterday that B12 and folic acid work hand in hand. So if you need one you probably need the other.
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2024.
Local b12 deficiency guidelines
Try to track down the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health board in Wales/Scotland as your GP is likely to refer to these.
If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not helpful. See blog post below.
Hello. I will tell you right up front, tell your Dr. you want an IF test. That's the intrinsic factor antibody test. This will kill two birds with one stone and will help you to avoid a year or two of scary symptoms and save precious time, which means it will keep you from getting worse because if your symptoms go long enough without treatment it can lead to permanent damage. Many people on here suffer needlessly for months to years due to doctors not understanding vitamin B12 deficiency and or anemia (and their god-like stubbornness).
Now if you take the test and it comes back negative for pernicious anemia then that is good because it means you may just have B12 deficiency, and that is good because it means you can absorb B12 via your diet and or pills, sublingual, etc. However, if you test positive on the IF test, you will need to have injections for the rest of your life because you won't be able to absorb B12 due to those antibodies. I'll stop here because this could be a longer write, but I hope this helps. My advice is to get on top of this before it becomes too pervasive. Don't mean to scare you or anything, but don't delay or it will be scary.
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