Confused : After reading several post... - Pernicious Anaemi...

Pernicious Anaemia Society

32,627 members23,989 posts

Confused

Pasjc profile image
14 Replies

After reading several post below on folic I'm soooooo confused and concerned im PA and self inject twice a week what is the smount of folic should I be taking there seems to be several opinions not just on here but on the B12 forum to. Im going to remove myself from the other group so any advice isn't conflicting. I very good graphic has been put on but it might as well have been in Spanish for all the sense it made to me thats no reflection on the person who posted im just not in their academic level.

Written by
Pasjc profile image
Pasjc
To view profiles and participate in discussions please or .
Read more about...
14 Replies
StaceyWall profile image
StaceyWall

I feel your pain with this. I’m b12d but not PA. I’m on a Facebook group that tells you all sorts and honestly, I’m starting to question their advice.

Have y out spoken to your doctor about this?

Pasjc profile image
Pasjc in reply toStaceyWall

I haven't as I don't want him to know I self inject

Nackapan profile image
Nackapan in reply toPasjc

Unless you deficient by your blood results you only need to eat lots of green leafy veg.

Or a supplement of up to 400mcg of folic acid.

Most mutivits have 200mcg in.

I only take a supplement if 200mcg 3 rim4s a week. When I took 400mcg daily I went above range. Most child bearing age women are advised 400mcg folic acid.

When you have bloods next done check it.

Pasjc profile image
Pasjc in reply toNackapan

I will thank you but I'd assumed as I don't absorb b12 from food the same applied to folic

Nackapan profile image
Nackapan in reply toPasjc

So did I and I was wrong as I absoeb folate from food obviously. I do need iron though?? And have needed vit d before b12 deficient

Mammaelf profile image
Mammaelf in reply toNackapan

Gosh, so did I ! It went on for 8 years . Back and fore the GP with chronic exhaustion and headaches. First is was “ ah you need vit d”. Then “ ah you need folate , then “ ah you need iron”. Eventually “ ah you’re B12 active is very low. Jezzz I mean come on. Just because I’m borderline they didn’t think of it. I now injection myself. Twice weekly. It’s changed my life !! I still take iron and folate twice a week. 5mg.

All I can say is they were going to put me on immune suppressants, and thank god I found this group. !

Nackapan profile image
Nackapan in reply toMammaelf

So glad twice weekly b12 injections have changed your life after 8 years!!

I've recently having more frequent injections every 5-7 days as the last year every 2 weeks prescribed not moving me forward. I'm nearly 2 years in from a b12 deficiency diagnosis. I was ill before that but was put down to stress ect ect . Headaches weakness bad fatigue paranoia but it creeps up dosent it. As I've said alot on here just so annoyed not done more routinely on blood tests . I was also falling over alot and had been to the dicties twice with sore ribs and saying I'm not right. After about 7 years of not needing to go you think it wouldve raised a red flag!! Nor even a blood test offered. I now as more 'with it' amazed I didnt push more and just accepted I was clumsy ' eyesight failing fatigue headaches flat emotionally. Unbelievable. By the time I had my first b12 serum blood test it was 106 range (200-900) of course they said I was depressed. I wasnt. Like you say gezzz

Hindsight hey.

Interesting the same order if events.

Pasjc profile image
Pasjc in reply toStaceyWall

I've just had very good advice on here im deleting myself from the other 2 sites im on ive been overloading myself with folic but I trust this site

Gambit62 profile image
Gambit62Administrator

B12 and folate are both absorbed in the ileum. If you have problems absorbing B12 then you are likely to have problems absorbing folate as well (iron is another common problem). This is why you might need to supplement folate.

Folate and B12 are used in a lot of the same processes at the cell level which is why the symptoms overlap. However, that doesn't create any need for extra folate if you have a B12 deficiency ... it's just the fact that a problem absorbing B12 is likely to mean a problem absorbing folate and both need to be addressed.

The dosages quoted on the face-book group 5mg=5000mcg are doses that relate to treating a folate deficiency and would be taken for a month or so and then folate levels would be rechecked. They are much larger than the doses you might need for maintenance of folate levels if you have an absorption problem but are not deficient.

The best source of folate is definitely food but if you have an absorption problem then diet alone may not be enough - which is where supplements come in. Large doses of folate taken daily for an extended period of time can cause problems in some of the processes going on at the cell level. Maintenance doses of 400mcg are well within this range. Doses of 1000mcg or more are the ones that seem to cause problems.

Pasjc profile image
Pasjc in reply toGambit62

Thank you yhink I understand now ill get the doctor to check my folate then take it from there. I have to have iron infusions periodically

deniseinmilden profile image
deniseinmilden in reply toPasjc

Gambit62's advice is always correct and extremely valuable so very well worth being guided by.

You are right to doubt some of the things said - often very bluntly - on the Facebook, and indeed any, groups. While there are thousands of people in the groups, and many of the contributors are excellent, there are some in all the groups who like to think their opinions and experiences are more valuable than the basic facts!

Miss-guineapig profile image
Miss-guineapig in reply toGambit62

Perfect answer Gambit, thank you x

Scothyroidy profile image
Scothyroidy

I inject twice a week and take no folic acid supplements. I had my bloods tested twice this year avd folate levels are fine.

Pasjc profile image
Pasjc in reply toScothyroidy

Thats good to hear as folic acid gives me stomach pain even though I take it after food x

Not what you're looking for?

You may also like...

Confused

I have symptoms of tremor brethlessness brain fog alopecia and my sister has a confirmed diagnosis...

Confused

Hi Its been agreed im having injectioms ih help from martyn hooper about low b12. Ive told...
Mandlou profile image

Confused about folic acid

Hi sorry to keep asking questions. Just trying to figure things out re my deficiencies . I am...
Andypandy30 profile image

So deflated and confused

Hi I’m just back from gp app and it didn’t go in my favour in that he wants to change b12...
Andypandy30 profile image

Thoroughly confused about B12

Hi all I would be very grateful for some help please. I am diagnosed with severe Fibromyalgia...
Catleighcat profile image

Moderation team

See all
Foggyme profile image
FoggymeAdministrator
Gambit62 profile image
Gambit62Administrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.