low folate again

[Leigh33]

Hi, I was wondering if folate levels stay low over a long period of time and neurological symptoms occur can this cause long term effects? Can it be irreversible? My folate has been low for years despite supplementing either prescription for 3 months then on to multivitamins and eating well, my b12 deficiency the cause was never found but thankfully on injections every 8 weeks. At the moment I have quite a lot of neurological issues, tingling, nerve pain, weakness and extreme fatigue. I have other health issues too so it’s hard to determine what is linked to what. Just want to know really are there any lasting effects from folate deficiency if it’s been left too long? As I’ve felt quite unwell for a long time.

[Technoid]

"The neurologic manifestations of folate deficiency overlap with those of vitamin B12 deficiency and include cognitive impairment, dementia, depression, and, less commonly, peripheral neuropathy and subacute combined degeneration of the spinal cord. "

pubmed.ncbi.nlm.nih.gov/243...

Folate and B12 operate very closely together in the metabolic cycles that involve them. Many (but not all) of the problems of B12 deficiency are caused by the unavailability of B12 where it is needed in the folate cycle.

Prescription folate (usually 5mg) is useful to quickly raise folate and get out of a deficiency state but its not uncommon to hear of folks who stop folate supplementation entirely and their folate then drops too low. I would check your multivitamin folate content - you may need 400mcg which is a common, safe dosage. If your folate is a bit low but still in the normal range I wouldnt be too concerned and you might just need to up folates in your diet and/or moderately increase your supplementation to keep your folate at a good level.

[Leigh33 in reply to Technoid]

I’m deficient again down to 2.5, I have peripheral neuropathy which I have had for years, also b12 deficiency that got diagnosed in 2017, I’ve felt very unwell recently just barely functioning, so I’m wondering if my folate has been low for a long time can it cause permanent damage the same as if a b12 deficiency if it’s left? As my last blood test for folate was over a year ago which was 2.8 and I was put on high dose for 3 months and then went on to multivitamin, just wondering if it’s caused harm if it’s been deficient for a long time…..I’m waiting to hear from my GP so will ask them.

[Technoid in reply to Leigh33]

As the paper suggests, it's going to be near impossible to distinguish neurological damage from a B12 deficiency from that from a folate deficiency as both cause a problem in the folate cycle that has the same neurological effects. I think it is a waste of mental energy to think about whether that damage is or is not fully reversible - many are seeing improvements years into treatment but there are no certainties.

All you can do is quickly and effectively treat whatever deficiencies exist now and try to setup a diet or supplement routine that keeps them away. I know thats not so easy and can be somewhat trial and error (within safe limits and regular testing if possible). I would advise to wait for the response of your GP as with such low folate, you may need a deficiency treatment dose again.

When your folate does come back to a good range, do consider a moderate maintenance supplementation to keep it up, and even adjust that upwards if 400mcg is not working out. 1mg is the folate upper limit so if you need a bit more up to 1mg to maintain good levels that shouldnt be a major concern. Consider the influence of other conditions of course. Best of luck with it

[Leigh33 in reply to Technoid]

thank you for your help 😊

[pitney]

Im struggling with low folate too at the moment, first time since PA diagnoses about 12 years ago. Felt dreadful for the last month then slightly better this last week but I think the folic acid is giving me really bad heads so im off to see a nutritionist next week to see if she can give me any tips. Hope you feel better soon😀

[bookish in reply to pitney]

If folic isn't suiting you, you may find that folate is better. I use a methyl(tetrahydro)folate liquid in small quantity and it helps considerably. Some don't process folic well. Alternatively your supplement may have a filler that doesn't agree with you. Best wishes

[pitney in reply to bookish]

Thank you for this, I am going to talk to the nutritionist about it as it had crossed my mind many thanks👍

[Zac2022]

you might find it useful to look up the b12 society and the b12 groups on social media. They suggest that people on b12 injections need folate support permanently. Sadly the NHS does not do this and also gives injections so infrequently that people remain sick. I learned to do my own injections. I have two per week plus folate everyday and have no symptoms.

[Cherylclaire Forum Support]

The GP checked my ferritin and folate when I still had hair loss and bleeding gums after my B12 deficiency was being treated. Although never out of range, they were both low witin range, so she put me on 3 months treatment for both.

Like you, I found that my levels would drop again, and so I would have to supplement. To do all this effectively, you need a GP to closely monitor your levels - to tell you when to supplement, whether to up your supplements, when to stop.

It took about two years before before my ferritin and folate were stabilised at useful levels. My GP thought that ferritin below 60 ug/L could give symptoms, oral medicine consultant later preferred above 80 ug/L. The folate better in top third (around 15 ug/L), but GP would say to stop when over 20, as unable to measure above this level.

My levels were never lower than 35 ug/L for ferritin and 5.5 ug/L for folate even at the start.

For those with B12 deficiency with neurological symptoms: the NICE guidelines advise every other day (EOD) B12 injections until no more improvements can be had, and then an injection every 2 months. If EOD injections were not given, or not continued for long enough, this could be worth repeating to eliminate this as the cause.

I was restarted on 2 B12 injections a week as I continued to decline on the usual 3-month injections and my MMA was found to be raised. This was continued, because it was effective, for 6 months. My MMA finally went down to a mid-range level after three years, on the 6th test. I think only the frequent injections got me there.

It seems that, with more support from your GP, your situation could be much improved over time. In any case, it would be worth trying for.