Please help! Folate: Hi, I don't know... - Pernicious Anaemi...

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Please help! Folate

Elge profile image
Elge
7 Replies

Hi, I don't know if any of you remember but I posted a while ago when I was due to have surgery and Low B12 and Iron. My surgery was cancelled as the anaesthetist wasn't happy. Anyway, I'm due the surgery on Thursday and have had some blood results back and the B12 is >1500 Ferritin is 29 but my Folate is now 3.0. I have never supplemented Folate and they have been 4.0 in July, 4.4 in August and now dropped to 3.0. Question is, will this level affect surgery prospects again? Also, would the rise and drop be because I had the loading doses? I went from loading doses to weekly for 4 weeks and now I'm 3 weeks since the last one so I have been taking Methylcobalamin stripes 5000 ug daily for the last week. I have told GP that if she/haematologist won't agree to up my injections I will buy them and self medicate.

Sorry if this doesn't make much sense, I really can't concentrate!

Thanks for reading x

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Elge profile image
Elge
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clivealive profile image
clivealiveForum Support

Hi Elge you don't say what the range <from -- to> was used for the Folate but I'm guessing your 3,0 is borderline or even deficient. Did your doctor not suggest supplementing with folic acid?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body so you would probably benefit by supplementing either by buying Folic Acid 400μg tablets over the counter at your local chemist or pharmacy or ensuring that you eat plenty of leafy green vegetables.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Elge profile image
Elge in reply to clivealive

Thank you Clive, the range is 4.0-20.0 for folate. GP never suggested Folic Acid all she said is she wants to wait to hear back from the Haematologist first, she won't do anything without their say-so. That's why I've had such a massive fight for the injections. Only problem is Haemy won't reply to messages, she has said she is going to try an online consultation with them and see if she has any joy that way. In the mean time I have no clue whether surgery will go ahead and I need to make arrangements for my Mum to travel over and book a caravan for her and I can't find out what is happening! They haven't even told me if I need to fast or anything! As if this isn't stressful enough already!

Thank you for your reply.

deniseinmilden profile image
deniseinmilden in reply to Elge

They are hopeless, aren't they - you poor soul.

As Clive says you will need folate to make your B12 work along with many other vitamins and minerals.

I have no idea whether or not it will affect whether they will do the surgery but you are likely to feel better and get a better outcome if you take some folic acid in addition to a broad spectrum multivitamin and mineral supplement.

Drs usually prescribe 5mg/milligram tablets (or multiples of these) for a folate deficiency. This is the equivalent to 50,000mcg/ug/micrograms and the tablets you can buy over the counter are 400mcg which means that you would need to take 12 and a half of the over the counter ones (400mcg x 12.5tablets = 50,000mcg = 5mg) to get the same level of folate that your Dr may prescribe!

Which basically means that you will be perfectly safe taking some of the over the counter ones you can buy cheaply in supermarkets.

My qualifications are in animal nutrition, not human medicine so I cannot officially advise you but if you were me I would (and do!) take a broad spectrum multivitamin and mineral supplement plus extra folate tablets and make sure I got plenty of potassium, magnesium and iron. I do self inject and am pleased to hear you will consider this in your quest for better health.

(Please bear in mind that a few of us need methylfolate and even fewer need folinic acid instead of folic acid so if that doesn't work there are still other options).

Good luck with everything!

fbirder profile image
fbirder

Unlike B12, folate levels can vary quite a bit with diet. So I wouldn’t worry about the bouncing about. However, it is still slightly low. I would take 400 mcg of folic acid a day. Most supermarkets do an effective, cheap, brand.

Taking more B12 might cause a small temporary drop. But it won’t affect your surgery.

Miss-guineapig profile image
Miss-guineapig

I'm still learning and not sure re blood readings Elge. When first diagnosed with PA I was prescribed 5 mg folic acid daily for 4 months and now prescribed 5mg every second day. After loading doses, I have VitB12 injections every 10 weeks as prescribed. However I do buy sublingual tablets to supplement. Sorry I can't help very much but folic is so important for healthy blood cells. Best wishes

Marz profile image
Marz

If you can manage liver once a week - it could help to raise your Ferritin to a better level quite quickly :-) On the Thyroid Forum it is often mentioned that Ferritin is good around 70 for our own thyroid hormones to work well and make us feel well ...

Wishing you well with your op :-)

Ryaan profile image
Ryaan

I understand your concern. You should be given Folic Acid without question as it’s low and it works with B12. I don’t think you use more Folate if you’re taking/injecting B12 but it’s Low and you should be taking it.

I’ve just asked my Gp to give me 5mg Folic Acid as I’m getting shortness of breath and I’m quite sure it’s folate.

Sometimes Gp’s can be very silly not to give you simple things.

Are you in UK ?

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