Hi everyone, just an update from me on this one - I asked for details of my test results (as told all satisfactory)and it turned out that they’d never had the folate and ferritin returned, so I had to have more bloods done. Anyway, results were 46 Ferritin (with low end of range being 15) and 3.3 for Folate (with lower than 3 being where they would treat). There doesn’t seem to be a range for folate anymore, so anything over 3 is supposed to be ok. Does anyone know what the range is/was? And what would be considered to be too high?
Interestingly, my folate at the time I started B12 injections was 4.7
Anyway, discussed with doctor that I am at low end and he’s put me on 5 mg of folic acid a day for a month which, he said if I feel better, he’ll put on repeat. I guess main question is, is 5mg ok to take daily longer term (if this does actually resolve my burning mouth issue)?
Thanks everyone 😊👍
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Colb53
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Thanks fbirder. I thought that was the case but didn’t know the dose he was giving me until I just picked up the prescription. I actually have 2 months supply but have been asked to report back after a month. I asked if I’d need another blood test and was told no and that it would just go on repeat if I felt better. Glad I checked! 😬
I'm also on the Facebook groups and they REALLY push using such a high dose of folic acid daily. I think the Facebook groups give a lot of very bad information at times, unfortunately. They also aren't open to discussuions. It's their way or the highway!
I was researching this a bit and came across the study below where the participants used large levels of folic acid daily and had positive results. I'm not advocating this, but I am interested in your opinion if you have one.
Yes - however the dangerous is stated as:- " recent folate intervention trials raise concern aboutpossible adverse effects of folate supplementation and suggest that too much folate in inopportune settings may be potentially harmful in individuals at higher risk for cardiovascular disease and cancer." So its not regarded dangerous - just as potentially so in some circumstances - indeed high levels of folate may help prevent some cancers and is certainly found to be beneficial where there is a B12 problem. These scares may have been unjustified and I suspect the balance of harm to people is much more in favour of high levels of folic acid supplementation.
If someone wants to take the risk then it's up to them.
I shall continue to warn people that high doses of folate may be dangerous. And I shall consider anybody who does recommend taking 5000 mcg a day, not under a doctor's prescription, as dangerous.
I think you need to be much more nuanced and warn of a possible problem for some people. The BNF say this about folic acid and I wish I had looked there before agreeing to reduce my doses - now I probably have a fight on my hands with my GP as my folate related improvements have now reduced considerably.
Cautions
Should never be given alone for pernicious anaemia (may precipitate subacute combined degeneration of the spinal cord)
Side-effects Frequency not known. Abdominal distension; appetite decreased; flatulence; nausea; vitamin B12 deficiency exacerbated
That recommendation is for pregnant women - it's limited because the effect of folic acid on the growing foetus is unknown and neural tube development is complete by 4 months so supplementing then is no longer required.
Recommending that pregnant women take folic acid would be the equivalent of a horse owner bolting an empty stable. That's because the neural tube defects caused by a folate deficiency happen before most women know they are pregnant.
That's why the recommendation is for Females of childbearing potential
And the recommendation is for just 400 mcg, because 5000 mcg is potentially harmful.
Bellabab. If you read further afield and look at recent peer reviewed research papers published in accredited medical journals, you will find that there is increasing concern about long-term supplementation with high dose folic acid (including the potential for irreversible neurological damage). There is also documented research evidence that finds that high dose supplementation can increase frequency and duration of seizures in those with epilepsy.
These are not just 'scares' and what you call 'the balance of harm' is NOT in favour of 'big dose' supplementation. To be clear for others reading, it is most certainly not 'more favourable' to take high doses of folic acid on a long-term basis.
I DO have to take large doses of folic acid because of treatment with methotrexate but folic acid levels are monitored regularly (i.e. enough folic acid to counteract some of the side effects of methotrexate WITHOUT going consistently over the top of the reference range)!
I'm sorry if this sounds a little pointed but this has been discussed before in one of your previous posts, with the same advice given by many responders.
We do ask that those on this forum DO NOT promote the idea of routine high dose supplementation with folic acid. 5mg of folic acid daily on a long-term basis is potentially dangerous. These kind of doses should only ever be taken when there is a proven need - and under medical supervision.
I do not want to start a fight about this - I do want to make sure people have the correct scientific advice.
I have looked into credible research and can find nothing to support any danger from high dose folic acid supplementation - except in specific circumstances.
I agree that the BNF says:-
Should never be given alone for pernicious anaemia (may precipitate subacute combined degeneration of the spinal cord)
This is one very important yet singular circumstance - not at all meaning high levels of folic acid supplementation are generally dangerous.
Again you say:- "There is also documented research evidence that finds that high dose supplementation can increase frequency and duration of seizures in those with epilepsy." So only for those with epilepsy - another specific singular circumstance.
Likewise we often say there are no side effects from long term use of B12 injections yet BNF says:-
General side-effects Frequency not known
Diarrhoea; dizziness; headache; hot flush; nausea; skin reactions; urine discolouration
Specific side-effects Frequency not known
With intramuscular use arrhythmia; chills; drug fever; hypokalaemia; malaise; pain; thrombocytosis; tremor; vomiting
Of these hypokalaemia can probably be prevented by eating a small banana daily - thrombocyctosis is more dangerous. This leads me to believe we should be checking serum potassium levels and platelet counts regularly when injecting every other day. All the other side effects and in particular arrhythmia need to be watched carefully with medical advice.
We need to be very clear and up front about all these issues otherwise we undermine our desire for the medical community to take our widespread observations about PA seriously - and potentially exposing people to avoidable danger. On balance I believe we should stick only with the BNF advice and do so openly and fully.
I have no intention of starting what you call 'a fight'.
I am sorry, but you are wrong.
The BNF is a prescribing guideline - it is not, nor is it intended to be - a publication that keeps up-to-date with recent research findings - indeed, that is not it's intended purpose. The BNF does not issue scientific advice, nor does it routinely update it's content in line with new findings.
The BNF is a starting place for gaining information...not something to 'stick-with' to the exclusion of all else!
To reiterate - nobody should take 5mg folic acid on a daily basis - unless under direct medical advice and supervision.
I have the same burning mouth issue I have been taking Iron, B12 for a couple month and I still have it. I get bloodwork done tomorrow so I will see how it is I just want this to be gone now
It’s awful isn’t it. I am sort of learning to live with it which is not good 😔. When you have your bloods, maybe ask them to check your folate too. I will let you know if the folic acid works for me 👍
MY folate was ok last bloods and I'm getting it done tomorrow again. My Ferratin was a 6 so that was super low and my B12 was lower side of normal. I have been doing liquid Iron and B12 for a few months so it will be interesting too see where I am now. I haven't been diagnosed with PA yet I am going to call my Rhumy to ask her to test me wiuld that be the coombs test ?
I have burning mouth as well. After about 8 months of shots it subsided, though it’s my first sign I’ve gone too long without a shot. Perhaps farther into your treatment it won’t be a regular occurrence for you.
Thanks tradkita. I’ve been on B12 injections since 2017 (now 10 weekly) so maybe need more frequent injections. I have had a lot of stress recently so maybe this has depleted it quicker than normal.
It’s purely anecdotal, but I did benefit from more frequent shots. I was struggling when I started at 3 shots a month. Currently at a shot every 5 days and I feel “normal” unless I overdo it (whether high stress, sickness, or being overactive). It’s worth a try to fight the burning mouth.
That said, you’re a veteran compared to me haha (started treatment in 2019). I feel silly giving advice. Wishing you good health.
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Low B12 *Update after seeing unhelpful GP*
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another.
Active B12 10 to 30%
Update, letters from consultants
What do these results mean please. I have hashi underactive, type 1 d, fibro.
