supplementing with folinic acid

[Skingal74]

Hi everyone!

How much folinic acid should one be supplementing when self injecting b12 daily?

Thanks so much!

[Gambit62 Administrator]

Nothing specific in injecting B12 that would mean youalso need to supplement folate in any form.

If you have a B12 absorption problem it can affect absorption of other vitamins and minerals - most common are folate and iron so you might need to supplement to counteract an absorption problem.

Some people don't get on with methylated forms of B12 like folinic acid and find it makes them anxious. Some find it helps with some symptoms eg I find a methylated form helps with shooting pains in ankles when I stand.

Unless you know you are folate deficient don't take doses over 1000mcg a day as this can result in B12 being trapped in the wrong from in a methylation cycle.

[forshaw2 in reply to Gambit62]

Hmm, so why are we advised on some facebook groups to take 5 mg of folic acid daily while injecting B12 daily.

[Gambit62 Administrator in reply to forshaw2]

You would have to ask them. Think someone has picked up the 5mg used to treat deficiencies and assumed that everyone who is B12 deficient is folate deficient.

[Technoid in reply to Gambit62]

The 5mg Folic Acid cult. 🙌

.

[Skingal74 in reply to Gambit62]

is folinic acid methylated? I thought it wasn’t. I was taking methylfolate before.

[Gambit62 Administrator in reply to Skingal74]

not a chemist but as I understand it there are several methylated forms

[Technoid in reply to Gambit62]

No, Folinic Acid is not methylated.

[Cherylclaire Forum Support]

When I was first found to be B12 deficient, it was not long before my folate and ferritin levels, as Gambit said, were also found to be low (although not out of range).

My GP initially gave me 3 months' worth of supplements for both, mainly because my hair continued to fall out and my gums continued to bleed after B12 injections loading dose. It took about two years for me to get both stabilised at good levels, as both would drop again soon after stopping supplements. For this, I relied on regular monitoring and blood tests from GP. It helps to stick to one GP that you trust - and who knows what you look like at best and worst !

Worth also getting vitamin D checked, as later on, a Dexascan revealed that I had osteoporosis of the spine, so I now get vit D on prescription.

Since it is now difficult to even speak to a GP now, I rely on symptoms to warn me if I need supplements on the odd occasion. If I still feel tired, sleeping too much and am losing too much hair, I have a daily multivitamin to see if this improves things over time. Mostly, not necessary now. Not exactly scientific I know, but continually improving diet alone does not seem to change things for me.

My need for B12 has not lessened.

[mabs79 in reply to Cherylclaire]

wwhat supplements are you taking and how often are you having b12 injections?

[Cherylclaire Forum Support in reply to mabs79]

I was initially given ferrous sulphate and folic acid for 3 months from GP to address low-range issues and symptoms.

GP believed that ferritin best above 60 ug/L to avoid any symptoms, Oral medicine consultant prefers me to be above 80. Difficult to get there and stay there.

Folic acid also difficult. At worst, needed to take 800ug (double dose) daily to bring level up and stabilised. Never more than that.

I now self inject about twice a week (usually every three days). I was first given this frequency by my GP - for six months. This was because I was unresponsive to usual regime of B12 injections and continued to decline. My methylmalonic acid (MMA) was found to be raised which confirmed my GP's suspicion that I had functional B12 deficiency - where B12 does not manage to get to tissue/ cell level easily. The MMA is supposed to link with the B12 to get it there. As she had already ruled out renal problems as the cause, the testing lab confirmed her diagnosis. Small intestine bacterial overgrowth (SIBO) also ruled out as a possible cause. Although result of the breath test were "inconclusive", trial of antibiotics failed to make a difference - and in fact I had a bad reaction (constant headache and bad vertigo) which might well have been B12 depeletion. So frequent B12 injections continued.

Usually, the loading dose of B12 injections will rapidly bring MMA back down within range. In my case, it took 3 years of frequent injections to do that. My 6th test was the first one in range.

This is unusual. My GP knew of only one other patient in her career, ten years previously, who had this condition -which is why she knew what to ask for, who to send me to and what to continue to monitor. I was lucky.