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folate

Leigh33 profile image
18 Replies

Hi

I’ve been on b12 injections for years now and I have them every 8 weeks, but the past couple of years the Drs have found I’ve had about 3 folate deficiencies, I take 3 months of folic acid and then told that’s all I need and then few months later might have an unrelated blood test and find I’m deficient again, my question is how soon after stopping the folic acid would my folate start to drop? I’m wondering if I should ask my GP if I should just be on folic acid all the time or would that be harmful? One time my folate dropped to 1! What would happen if it was zero? I’m having other health issues so it’s hard to tell what’s causing me to feel what. Many thanks.

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Leigh33 profile image
Leigh33
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18 Replies
wedgewood profile image
wedgewood

Many people with P.A. take a daily 400 mcg tablet of folic acid . That is a modest amount that is prescribed during pregnancy . So why not do that ?

helvella profile image
helvella

We see the same roller-coastering attitude across iron as well.

Once you are deemed replete, stop the folic acid, the iron supplement, whatever. Almost always ignoring that the original cause has not been addressed. Therefore the level drops again.

Switching between fairly high-dose and none - rather than continuous low or modest dosing - is absolute madness. Zimmer frame to nothing and ignore that the walking stick had ever been invented.

In the best of all possible worlds the cause would be identified and resolved. But even if that happens, there might be a long time during which some supplementation is required. And what happens if the cause cannot be identified or cannot be resolved?

For folic acid, this is especially ludicrous. The price of supermarket folic acid is so low almost anyone can afford, whereas high dose is prescription-only and costs the NHS directly in terms of managing the prescription (still very cheap other than liquid forms).

Gambit62 profile image
Gambit62Administrator

folic acid isn't stored in the body which means its very responsive to dietary intake. It sounds like the absorption problem you have with B12 is also affecting folate absorption so not surprising that your levels are plummeting after you have finished a dosage. It may be 400mg is going to be too small a dose for you - we have had at least one other person on the forum who had significant issues with folate absorption. It may help to take the dose with something acid as chances are that you don't have much stomach acidity and that is also affecting absorption. Good luck in following up with the GP

Leigh33 profile image
Leigh33 in reply to Gambit62

That’s for your reply, yes I think my levels seem to fall quickly, but I’m also having issues with my prolactin levels being very high atm so seeing an endocrinologist very soon so can’t tell what is making me feel tired, have notice it more the past month since the folate stopped, I think I will ask the GP if I should just continue to take the folate seeing as I’ve been deficient so many times.

Miss-guineapig profile image
Miss-guineapig in reply to Gambit62

Thank you for clarifying this Gambit, isn’t it funny how over time you forget the reason why you take this and that x

Technoid profile image
Technoid in reply to Gambit62

Just wanted to clarify on folate stores.

"The total body content of folate is estimated to be 15 to 30 mg; about half of this amount is stored in the liver and the remainder in blood and body tissues"

ods.od.nih.gov/factsheets/F...

"Your body's store of folate is usually enough to last 4 months. This means you need folate in your daily diet to ensure your body has sufficient stores of the vitamin."

nhs.uk/conditions/vitamin-b...

This 3-4 month supply however assumes no absorption issues and a historically adequate folate intake, which is often not the case where absorption issues are present but yet unidentified. So indeed, as others mentioned, taking a regular moderate dose of 400mcg could be a good start and then see how your levels respond. Ill effects are very unlikely at such a dosage, it might be that you end up needing more to keep your levels in a good range. You don't mention the dosage you were on, but if it was very high (5mg) that might explain the seesaw when you start/stop it.

If you are worried about unmetabolised folic acid build up (not really an issue unless quite high doses are involved) you could consider the various methylated folates, if you respond well to them.

Nackapan profile image
Nackapan

My daughter is the same.She needs a daily maintenence of 400mcg at least .

Young women if child bearing age are recommended to take a daily folic acid supplement as you are in the post natal period.

It's no good if you seesaw .

Do you include lots of folate rich foods.?

Leigh33 profile image
Leigh33 in reply to Nackapan

Hi, yes I do try to eat green leafy veg with dinner when possible and then other times have spinach and kale smoothies, it’s been on going for a couple of years now but I’m now being referred to an endocrinologist as other bloods are off that need to be looked into, I just feel so tired and run down all the time I’m trying to figure out what will help, and it’s been about a month since I stopped my last 3 month stint of folate so wondering if that’s an issue 🤔

Nackapan profile image
Nackapan in reply to Leigh33

Yes a maintenence dose may be needed daily to top up dietary intake.

Nackapan profile image
Nackapan in reply to Leigh33

Keep us posted

horsetail profile image
horsetail in reply to Leigh33

You might look into oxalates. I have read that high oxalate diets can cause fatigue among other things. So many healthy foods are high in oxalate.

Sparklyjenson profile image
Sparklyjenson

Hi Leigh33,

I’ve read it’s better to take methylfolate and not folic acid, especially if you have a gene mutation that means you find it hard to convert folic acid into a usable form of folate. Folic acid is the cheaper more synthetic version and some people find it hard to convert to folate. There is a Gene mutation which can cause the conversion problem. Might be worth getting a test for the mutation to see if it explains your very low results.

rootfunctionalmedicine.com/...

Good luck.

Leigh33 profile image
Leigh33 in reply to Sparklyjenson

Oh that’s interesting thank you, I will ask my GP of this test can be done as it’s never been looked into as to why I’m deficient in folate, but neither was my b12 deficiency Drs just said it was diet yet I eat all the right foods so was then just told it’s was just a malabsorption problem.

EiCa profile image
EiCa in reply to Sparklyjenson

I highly agree with this. Folic acid is much harder to convert to usable form. L-methyl folate has already been converted. It can be very activating though. If it were me I would try a small 400 mcg/ dose of methyl folate daily. It just may do the trick for you. It is not expensive. I just ordered some sublingual tablets for better absorption. It is also very good to get natural folate from food but I find it difficult to eat enough green foods to get the minimum requirement.

Miss-guineapig profile image
Miss-guineapig

Morning Leigh, I take prescribed 5mg of folic every second day, it’s the only way I can keep my blood in check. This will be for all the time. I just assumed I didn’t absorb it due to pernicious anaemia but to be honest I have not researched it.Wishing you well x

Leigh33 profile image
Leigh33 in reply to Miss-guineapig

Thank you, oh I wonder if every other day at that dose will be good, I hope it’s helping you, I will ask GP, thanks x

Miss-guineapig profile image
Miss-guineapig in reply to Leigh33

Initially I took 5mg daily when levels were really low, and when it was back to being ok the Dr changed it to every second day. Most people on the site take a very low dose compared to me, but like you my levels drop so I need more than just a wee maintenance dose I think. It works and I am well, so that’s the main thing, good luck whatever you decide Leigh x

Cinders70 profile image
Cinders70

Hi Leigh33. I’ve just been told I’ve got a folate deficiency (1.4) again, after originally being diagnosed alongside my b12 deficiency a couple of years back (when it was 2.8). My GP has put me on three months of 5mg folic acid tablets and said that after this I should continue to take an over the counter dose every day. In the absence of signs of celiac disease she thinks it’s dietary, and I don’t eat a whole load of leafy greens, but I do eat other stuff containing folate, so I’m not sure.The point is, she doesn’t seem to think it’s an issue taking folate at low doses for life now.

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