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Severe folate deficiency

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Hi I’m new to this forum. I have been diagnosed recently with severe folate deficiency, it was below 2. I had the pins and needles like tingling down my arms and legs. So went to doctor and got bloods done which resulted in folate deficiency. I have been on 5mg of folic acid now for a week. The tingling has eased but still get it now and then and like a burning sensation down my limbs at night. The doctor said that it could take months before I feel better as my nerves need to repair themselves. Feeling weak in the morning and I’ve also noticed a weakness in my left arm. I can still use it fine but it’s feels weak which can feel unpleasant. Just wondering if anyone else has experienced this? Thank you

25 Replies

Has the doctor done any investigations as to why your folate was low, and has your B12 level been checked.

That last is important. Taking high levels of folic acid while you have a B12 deficiency can make nerve damage worse - ncbi.nlm.nih.gov/books/NBK1... If your B12 hasn't been checked, or if it were towards the low end of normal then contact your doctor immediately to fix that.

Hidden
Hidden in reply to fbirder

I did ask about my b12 and he said it was fine. Over 450 whatever that means. They didn’t investigate why it was low assumed bad diet. Which I would agree with. Haven’t been eating as I should. But I was also taking a laxative to help with water weight which I know is stupid and I have stopped that. I think that’s why I wasn’t absorbing folate.

fbirder
fbirder in reply to Hidden

Yup, 450 sounds great for B12.

After a month on the folic acid you should get your levels tested again. If they're OK, and it's very likely they will be, then just 400 mcg a day should be enough to keep them there.

Hidden
Hidden in reply to fbirder

Thank you so much for your reply. Any advice will help 😊

Samsungtracy
Samsungtracy in reply to Hidden

I would get an active b12 test not just a total one. It’s more indicative of b12 issues .

Have a read here

forthwithlife.co.uk/blog/wh...

Gambit62
Gambit62Administrator

Unfortunately nerve damage does take a very long time to recover.I experiences some nerve damage as a result of (mis)using some equipment whilst doing some scrub equipment last February. It resulted in severe aggravation of existing carpal tunnel - to the point where I was struggling to use a computer for any length of time. Looking at and correcting posture helped a lot but certainly wasn't resolving it. I found that using a muscle rub that contained chilli helped as well but what eventually did the trick was time - but it was a good 6-8 months.

My GP did prescribe some gabapentin but I experiences side-effects that I couldn't tolerate. Amitryptyline was another option (which can have fewer side-effects) but I didn't really feel like trying that.

Hidden
Hidden in reply to Gambit62

Thank you so much for your reply. I think I am just impatient hoping for a quick recovery. I guess I just need to give it time. It’s only been a week. 🤞😊

Gambit62
Gambit62Administrator in reply to Hidden

Hope that things resolve themselves soon - and that you do manage to get to a place where you can improve your diet - dietary folate is definitely the best sort. There are a number of forums on HU for people that are struggling with getting diet right that might be helpful.You might also find it useful to look at some free on-line courses on diet available on some platforms like futurelearn.

This one on the mediterranean and okinawa diets and why they are considered healthy might be off interest

futurelearn.com/courses/oki...

Hidden
Hidden in reply to Gambit62

I have improved my diet massively. For over a week now since getting my diagnosis. Eating all sorts of greens and fruits etc now. So it’s been a huge wake up call for me now. Hoping it will all work soon 😊

Gambit62
Gambit62Administrator in reply to Hidden

glad to hear that you have managed to improve your diet. :)

Bellabab
Bellabab in reply to Gambit62

I have no problems with Amitryptyline - it works very well in low doses for pain.

I would consider supplementing b12 as well alongside the folic acid.

Definitely get your b12 checked again after the 4 months as your level is likely to drop while taking folic acid. It's important you don't supplement with b12 before then as you won't get a true reading of your level.

fbirder
fbirder in reply to Choox

Taking folic acid will not make B12 drop.

If it was 450 before then a deficiency is very, very unlikely.

Choox
Choox in reply to fbirder

I was folate deficient & after 4 months supplementing my b12 level had dropped from 250 to 217. Some of my symptoms had improved with taking folic acid but I still felt very ill and although my b12 was classed as 'within range' I was very symptomatic of b12 deficiency at 250. I was advised to take a b12 sublingual and while my serum levels rose quickly and my energy improved, my neurological and some other symptoms did not improve. After a long hard road trying to fix my health it was only after I saw a neurologist, who prescribed B12 injections, that my health improved.We are all different, some people may be ok at a 250 level ... and higher ... but some not.

I feel it's prudent not to supplement until all 'true' results are in.

fbirder
fbirder in reply to Choox

450 is a lot higher than 250.

Choox
Choox in reply to fbirder

It's interesting that in Europe under 500 is classed as deficient and I believe there is research going on to have the numbers raised in the UK.Imho if the UK took symptoms more on board rather than just going by numbers a lot more people would be getting the treatment they need.

fbirder
fbirder in reply to Choox

No!

Under 500 is not classed as deficient in Europe, Japan, or Outer Mongolia. That is a myth.

No, the number will not be raised in the UK. That is a myth.

Yes, doctors should treat symptoms, not numbers.

There is a big overlap between people with 'normal' B12 levels but with symptoms of a deficiency and people with 'low' B12 levels yet no sign of a deficiency at all. The current ranges are set to try and minimise the number of normal people who get needlessly classed as deficient, while trying to minimise the number of people who are deficient who get classed as 'normal'.

I wrote about it here - healthunlocked.com/pasoc/po....

Gen89
Gen89 in reply to Choox

Hi can I ask how long your neurologist advised you to have B12 injections for. I have low borderline b12 with neurological symptoms and my GP has only put me on the anaemia protocol of six injections over two weeks whilst the Nice guidelines say to carry on for longer. I was wondering about asking for a referral but wasn’t sure whether to see a neurologist or haematologist about the B12.

fbirder
fbirder in reply to Gen89

A neurologist. Your main problems are neurological.

A haematologist might see that you are not anaemic and pronounce you 'cured'.

Gen89
Gen89 in reply to fbirder

Thank you

Hidden
Hidden in reply to Choox

Thanks for your reply. If you don’t mind me asking, what symptoms did you have? 😊

Choox
Choox in reply to Hidden

Chronic fatigue; balance issues; eye problems; anxiety; irritability; fearfulness; lack of concentration; forgetfulness; noise intolerance; weak voice; breathlessness; inner tremors; thinning hair; pins & needles in my foot; tinnitus.I was housebound for almost a year & was told I had CFS. I was a physical & emotional mess, I feared I was going mad.

My b12 when my symptoms were at their worst was 217 & folate 3.5.

I was given antidepressants which sent me nuts, ended up in a&e twice.

It's been a long road to get the right treatment but I'm doing really well now.

I get one prescribed monthly jab but I also self inject weekly.

I also had low vitamin D & now supplement that too.

Hi, I have kept a health diary for the last two years and I emailed a copy of it to the neurologist before my appointment... which he said he found really helpful...and he agreed with me that I was symptomatic of deficiency. I was prescribed loading doses and am on monthly injections, symptom led...I'm 6 months on injections now & doing much better.I've found keeping a health diary to be really helpful & my GP asks for regular updates of it which she keeps in my file

Gen89
Gen89 in reply to Choox

That’s really useful to know. Thanks

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