B12/B9 balance

[ADDG]

Since diagnosis with PA last year, I have had bi-monthly B12 injections and take a daily supplement of folic acid (Boots, 2 tablets). I have noticed that for 5-6 days after each injection I have signs of anaemia (odd sensation in feet, purple patches on fingers and some incontinence). I have also noticed that upping my daily dose of folic acid improves matters. However, if I take too much folic acid or take a higher dose for too long, I again get signs of anaemia. It seems to me that B12 and B9 need to be properly balanced. My problem is I don't know how to do this and a haematologist I consulted privately said there are never any adverse effects from taking too much of B12 or B9. (He also said that no one with PA needs more than 1 injection every 3 months which I think is contrary to NICE guidance.)

I wonder if anyone else has noticed this problem and whether anyone can offer any advice/insight.

Many thanks.

[Nackapan]

Do you have regulat blood tests to see your folate level so you csn get a maintenence dose you need?

Also the same for iron, vit d

You may need a higher frequency of b12? As symptoms return.

Some need daily sone twice s week some weekly ect .

My daughter needs 400mcg folic acid daily

I don't but need s low iron supplement as a maintenence alongside b12 injections.

Yes specialists differ.

I had one neurologist who said I wax addicted and it's dangerous and told to wean off . ( not on letter to Gp though!- )

Another said to keep 2 weekly .

Another......

As fir Gps 2-3 ,monthly they are keen to withdraw

Go by your symptoms and blood results.

Hope you get on okay

[Technoid]

Haven't experienced exactly what you describe but I felt a lot better when I stopped my folate supplementation - I get more than twice the RDA of folate in my diet so I quickly went overrange and now highly doubt that I should been supplementing in the first place, even that it may have worsened things for me as I had a steep early treatment decline. I was changing a lot of things at one time though so its now hard to correlate things. I found the following two papers on folate<-> B12 interaction to be interesting.

haematologica.org/article/v...

academic.oup.com/advances/a...

I've not heard of excess B12 negatively affecting folate metabolism or folate levels but I have heard the opposite, that excess folate may negatively affect B12. But its a tricky area and there are conflicting views/papers.

[Gambit62 Administrator]

what dose of folate are you taking, and what type. It is possible for too much folate to result in B12 being trapped in the wrong from in your cells (called the folate trap) it may be that this is what you are experiencing.

Best to avoid daily doses greater than 1000mcg unless prescribed for a folate deficiency.