trying to find what works for me

[Andypandy30]

Iv been taking my injections weekly and been doing ok but can’t seem to get the correct folic acid supplement to keep levels up . Any help from anyone . I was taking 400 mcg otc ones daily and when I tried to Increase these I felt jittery and had a poorly stomach . I then tried an over the counter multivitamin they had 200 mcg folic acid but I felt my muscles very weak and burning feeling and don’t know if it came from that so I’m now trying to eat folate rich foods to keep levels up . Last result in November was 10 for folate . I haven’t tried methylfolate at all as Iv heard people can have a reaction to it so what else can I take ?

[Cherylclaire Forum Support]

Hi Andypandy30 -

at first my serum folate levels were around the 5 or 6 ug/L mark (range 4.6 - 18.7 ug/L) and after prescription supplement (3 month's treatment) would be over 20, then go back to where it was originally ! This takes time, experimentation and a GP that will monitor your readings. Often "Normal- in range" is not the whole picture.

It's quite hard to tell what symptoms are B12 deficiency, what could be folate or ferritin. My GP believed my hair loss and bleeding gums to be more likely due to low folate and/or iron than B12. Often lists of symptoms have some overlap so it's difficult to tell for sure.

It takes a long time to make a difference .

Since all of mine seem to be improving together, these symptoms have gone without being able to attribute them to an individual deficiency. It would be useful, but never mind, they're gone because I supplement - B12 , folic acid, multivitamins and minerals (including iron and folic acid).

My folate level is now consistently over 20 ug/L, and my GP has suggested stopping the supplement . I'm a vegetarian and do eat a lot of folate-rich food but to no real effect since becoming ill. If you can get a better level by food alone, it would be a lot better (and cheaper) - certainly worth trying first.

Expect it to take time. Even the NHS prescribed course is usually 3 months.

It was suggested that I should be aiming for the top third of the range for folate and ferritin levels. Not by a GP, but on this forum. It seems to work for me as a goal.

Weak muscles might also be due to B12 deficiency, which also takes a long time to improve.

Keep a record of symptoms: frequency and severity. Include the ones that are visible. Take photos of these. This way, you have something to show GP/ consultant (some will be interested, maybe not all !) and a way to check back once improvements start. It can boost morale, so worth it even if you don't show anyone.

Good luck.