Confused about Folate

[Cinders70]

I’m halfway through having B12 loading shots (6 over three weeks, it’s the only way they could fit me in). Then have been told I will need shots every 12 weeks.

I’ve questioned the treatment, given the fact I have very bad pins and needles and numbness in my hands and a load of the other symptoms talked about in here. I thought I might need more loading doses and more regular shots after.

I’ve been told by the GP a lot of my symptoms are due to the fact I also have a folate deficiency.

Is this right? And is it the folate deficiency (2.8) which has caused the B12 deficiency (85 ng/L). Although I eat some, I don’t eat a tonne of leafy green veg. But I do eat meat and dairy (and occasional a shellfish), so have I caused this myself? My IF test was normal, as was ferritin.

[Sleepybunny]

Hi,

I wrote a detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful. There is also some info about folate deficiency.

healthunlocked.com/pasoc/po...

[fbirder]

No. Your low folate hasn't caused your B12 deficiency. What is most likely is that the same problem has caused both.

The neurological symptoms you describe can be caused by a B12 or a folate deficiency.

If I were you I would start taking folic acid supplements (400 mcg a day, from the supermarket) and then complain to the doctor that you still have your symptoms and demand a referral to a neurologist. Although in the current climate that will take a while.

I would also demand that they treat you in accordance to the British National Formulary - injections every other day until there is no further improvement, followed by injections every 8 weeks.

[Gambit62 Administrator]

How on earth - in the presence of both folate and B12 deficiencies - can your GP be sure which is causing your neurological problems? or may be he's just unaware that B12 deficiency causes neurological problems.

What have they done about treating the folate deficiency? Treatment for folate deficiency should start a day after first B12 injection. The best form of folate is from food so it would be a good idea to try upping the fresh veg.

The IF test is notoriously insensitive and gives false negatives around 50% of the time so the fact that it came back negatives does not rule out PA. The BCSH standards on diagnosis and treatment of cobalamin and folate disorders even refers to IFAB negative PA in recognition of the fact that the test is so flaky.

If your diet contains meat etc then your deficiency is going to be an absorption problem - and PA is the most likely absorption problem

[Cinders70]

Thanks for the replies @sleepybunny, @fbirder, @Gambit62

I was given folate 5mg tablets to take, which due to a delay in being able to start my loading doses, I started a week before the B12 shots.

Since asking for confirmation about the treatment plan I’m on, the GP has said she will refer me to a consultant gastroenterologist (I questioned why not a haematologist and was told that gastro deal with B12 problems around here and the haematology dept probably wouldn’t be clued up on it!). However, this will take some time, so I’m guessing it will be 6 loading doses.

I was also told the IF test is 95% accurate.....

[fbirder in reply to Cinders70]

While your GP is correct is thinking that PA is a gastro problem, you really need to insist on also seeing a neurologist as that is your main problem right now.

The IF test is 95% accurate if it is positive. But, only 50% accurate if it is negative. A positive result means you almost certainly have PA. A negative result means nothing at all.

[Cinders70 in reply to fbirder]

Aha, that what she was getting confused about!

[Miss-guineapig]

Hi Cinders, I have read so much and greatful for all the advice on this site. I too was confused about folate etc, so will try to briefly share my experience. 2 yrs ago had B12 , folate and iron deficiency. Diagnosed with PA. Took loading doses, and continued with 5mg folic acid and iron for 4 months, which is normal practice in Scotland....and you need folic acid to make good red blood cells. After 4months my GP stopped iron, but I was to continue with 5mg folic acid every second day and VitB12 injections 12 weekly. I still had a little tingling, brain fog etc, so GP said I could inject 8-12 weekly, so long as she knew. I now self inject 8 weekly (but buy VitB12 ampules from Germany, and give one inbetween...so I have an injection every 4 wks, not informed my GP on that bit lol).

I read about 5mg of folic being too high etc, and people recommending 400micrgrams, which is so much lower than I take! Anyway, I spoke with my GP. She did bloods for folic, iron and B12...I was slightly panicking re B12 result being sky high, and any questions the result might initiate...but of course it didn't. Anyway, she still recommends that I take 5mg every second day.

So that's what I do...5mg folic acid every second day, inject B12 every 4 weeks, and also I buy a vitD3 and take that every second day too, but I have stopped all other supplements for now.

It takes time, Cinders but I feel pretty well, sometimes I still get tingling, a few months ago my mod wasn't great, but that's fine now. Brain fog and my memory is annoying but much much better than early days. Hope this helps and I wish you well x

[Cinders70 in reply to Miss-guineapig]

Hi @Miss-guineapig thanks so much for your reply and for taking the time to pass on all that info, it’s good to hear from someone who also has the folate problem and how you have tackled it.

Good to hear that things are improving for you!

My next challenge is to try to get my GP continue my loading doses of B12, otherwise I should finish 6x this coming Wednesday!

Take care and keep well!

Cinders x