Folic Acid….need new advice/nice guidelines

[Miss-guineapig]

I have just replied to smg1950 question re folic acid and now doubting my own reply. I have happily bobbed along talking 5mg folic daily. for a few years, then questioned my GP who reduced it to 5Mg every second day. I have been well except for recent gastric issues which are being investigated. However I have just read the lates nice guidelines and not sitting happy with my folic acid dose. I am speaking with my GP next week, and wonder from all you ‘experts’ what I should be asking. Thanks in advance x

[Nackapan]

What are your folate levels on your last blood test? I always thought s high dose was only for short term. 😕

Saying that some need a daily higher dose .

I woukd go by blood results

The guidelines are better as just saying to treat b12 first ,then folate.

[Miss-guineapig in reply to Nackapan]

…it is, only first two month I believe if you ate deficient. Mine was never changed, will discuss with GP soon.

[Nackapan in reply to Miss-guineapig]

Yes and get your levels tested on a blood test so you know where you are

[Miss-guineapig in reply to Nackapan]

will do x

[Sleepybunny]

Hi,

I suggest trying to find the local B12 deficiency and folate deficiency guidelines for your ICB (Integrated Care Board) or Health Board.

ICBs (England)

nhs.uk/nhs-services/find-yo...

They may be included in Anaemia guidelines.

If you can't find them online, try submitting a FOI (Freedom of Information) request to your ICB or Health Board website that asks which folate deficiency guidelines (and B12 deficiency guidelines) they are using and ask for a link to or copy of those guidelines.

Other links that mention folate deficiency

Some are aimed at health professionals and may have details that could be upsetting.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

Patient Info website - Folate deficiency

patient.info/doctor/folate-...

B12 books I found useful (folate deficiency is also mentioned)

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

[Miss-guineapig in reply to Sleepybunny]

Thank you for this bunny

[Sleepybunny in reply to Miss-guineapig]

NHS link about B12 deficiency and folate deficiency

nhs.uk/conditions/vitamin-b...

[Miss-guineapig in reply to Sleepybunny]

Thank you for this x

[Technoid]

We cannot really recommend anything without knowing how your folate labs responded over time to this dosage. If they're consistently well overrange that would suggest you may be overdosing. 5mg daily or even alternate days is a huge dosage as I explained in the other thread. 400mcg a day is more typical. Did your GP explain why such a massive dosage is warranted on an ongoing basis? Some people do have problems with folate absorption so its impossible to give an off the cuff recommendation without knowing if you do have such an issue.

[Miss-guineapig]

Thank you, I will chat with her as she is a new GP for me and has been very attentive in her listening. I think the previous GP may have changed 5mg daily to 5mg on alternative days because I questioned it! I also phoned the pharmacist at the time but no joy !

[Michelle___justme]

hi, I was told I was folate difficent after having been hospitalised with food poisoning my bowel was not working correctly and needed time to heal and wasn’t absorbing the folate I ate so I was put on tablets after many symptoms eg rapid heart beat tired etc. I was on them for 6 months and then taking off them altogether then symptoms came back and had them for another 3 months after that I was ok bloods were all fine my b12 did drop but not to a level of needing anything I still take one every week just buy it now as I don’t ever want to get them back. Maybe your bowel isn’t absorbing correctly too. Hope this helps and you get well soon.

[Miss-guineapig in reply to Michelle___justme]

thanks for this, definately think about all this x

[MorningMist]

5mg folic acid at varying frequency is prescribed for people taking prescription medicines which deactivate it.

Methotrexate for rheumatoid arthritis is one I know of.

As a cofactor to B12 though I think most people manage with much smaller doses of either folic acid or methyl folate. 400mcg a day as mentioned by Technoid. It is trial and error though to find what suits you

[Miss-guineapig in reply to MorningMist]

thank you so much

[Lincsangel1]

Hi everyone... my folate level when last tested in June was 4.6... my gp prescibed me 5mg folic acid daily which I'm still taking now.I'm going to request another blood test in the next week or so.

However... I have been chatting with members of the B12 Society.. who say to continue with 5mg daily...and that folate needs to be in the high range to support B12 injections..but after reading this thread I'm now doubting as to what I should be doing... I inject daily

[Miss-guineapig in reply to Lincsangel1]

I am in the very same boat as you Lincsangel and never gave it a thought till I read this post. I questioned my previous GP as I was advised 5mg daily, and after discussion she thought 5mg every second day would be fine. Anyway, I am speaking with another GP next week so I will ask her then….will let you know the outcome x

[Lincsangel1 in reply to Miss-guineapig]

Thankyou... my Gp only prescribed it as I told that is what the B12 Society recommend ..so I'm really confused now x

[Miss-guineapig in reply to Lincsangel1]

I believe initially 5mg folic along with iron supplement is very important form healthy red blood cells, normally 4-6 months. Then folic can be reduced to vast amounts lower eg 200/400 micrograms. I took 5mg for years must be about 8 yrs. Anyway GP said I don’t need to take it now but I will still take a very low dise, even every second day. To be honest this is the first time I have asked GP re folic, I was happy just bobbing along xx Wishing you well x