Folate /b12: When i last wanted my... - Pernicious Anaemi...

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Folate /b12

Nackapan profile image
25 Replies

When i last wanted my folate level checked and it was added to the blood form the lab automatically did b12 with it. That wasnt on the form.

As I dont want b12 done I'm not getting folate checked next time.

Is everyone having this problem?

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Nackapan profile image
Nackapan
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25 Replies

No. I Bly get checked what the GP and I have agreed.

Nackapan profile image
Nackapan in reply to

Sorry what does Bly mean?

The Gp only put folate on the form. Not b12.

The lab did the b12 and folate together if I wasnt clear

fbirder profile image
fbirder in reply to Nackapan

That's standard. I don't think it'll be easier to get them to do otherwise.

in reply to fbirder

I have had my folate checked independently of B12.

in reply to

And that is because my GP has annotated the request with her reasons.

Nackapan profile image
Nackapan in reply to

Oh thars good.

in reply to Nackapan

Only not bly

Nackapan profile image
Nackapan in reply to

Still dont get it. 😂 bly?

in reply to Nackapan

The word should read only not bly as typed

Nackapan profile image
Nackapan in reply to

Arrh okay . I do lots of typos . I'm not going to let it put me off posting though. I'm not pain free when typing. My head sizzles and vision up and down.

Foggyme profile image
FoggymeAdministrator

Hi Nackapan. Labs sometimes test B12 (even if not requested) when testing folate. This is because if folate is deficient, guidelines state that folic acid supplements should not be taken in the presence of simultaneous B12 deficiency - so the guidelines state that both should be tested together so that the full status of each is known. (As you are probably aware treating folate deficiency in the presence of undiagnosed B12 deficiency can cause 'masking' of B12 deficiency, leaving it undiagnosed and untreated).

So...the lab are probably following best practice - and it sounds 'unusual' because not many do!

👍

Nackapan profile image
Nackapan in reply to Foggyme

Okay thanks. So just tricky if I dont want b12 being done but want folate checking. Most in practise will ignore high levels but I think a few would use it to stop injections. Just trying t8 he careful ad still on 2 weekly which I seem to need.

Nackapan profile image
Nackapan in reply to Foggyme

Right as my folate was above range and I'm only having what's in s multi vit. 200mcg i wont get it done

Foggyme profile image
FoggymeAdministrator in reply to Nackapan

If you want folate checked in the future and don't want B12 tested ask your GP to write on the blood request forms that you are receiving regular B12 injections - should negate the need to test B12 simply because folate being tested👍

Nackapan profile image
Nackapan in reply to Foggyme

Actually the phlebotomist is good at my surgery as I have the form she could do it . She just gets if okayed by Gp. As bloods are first. I dont think folate can be too high but would like it done. Haven't seen a multivitamin without folic acid. It odd I can absorb that and not b12 or iron....bodies

Thanks

Foggyme profile image
FoggymeAdministrator in reply to Nackapan

Yes...don't think I've ever spotted a 'multi' that does not contain folic acid Nackapan.

I'm just wondering if your above range folate (perhaps due to over-supplementation) could be responsible (perhaps in part) for your ongoing headaches (and some of your other symptoms too - tiredness and weakness etc.)?

One problem with 'multis' is that they may result in taking vitamins or minerals that your body doesn't really need ('cause 'everything' is included - in some multis at doses way above the recommended RDA. And even when the content is 100% of recommended RDA (which most tend to be), this can be too much if the body doesn't actually need a particular vitamin (as with your case and the folic acid - and B6 can be an issue here too).

The best way to supplement is to get all vitamin and minerals tested so that the true status of each can be assessed. Then supplementation can be done in an appropriately targeted way (rather than through a hit and miss 'multi' supplementation approach).

Don't think many GP's will do full vitamin and mineral screening (but worth asking)? Private testing is available and some go down that route (some research questions the accuracy of hair testing - bloods better 😉).

If you were able to go down that route, may get over the problem of all multis contains folic acid (which your blood test indicates you don't need) and enable you to take individual supplements where there is a proven need.

A shame GP's are not more on the ball with this - so important to health and wellbeing- especially where absorption issues exist.

Oh and...not sure if you are aware, so just in case...best not to take iron at the same time as other supplements - especially if taking a 'multi' (other vitamins/minerals can impede the absorption of iron - so best to leave two hours between). Iron uptake optimised if taken with orange juice or vitamin C.

It's all so tricky...good luck 👍

Nackapan profile image
Nackapan in reply to Foggyme

Thank you for all that helpful In formation.

I've had magnesium potassium vitamin d ,folate . Ferritin full iron . Calcium. On blood tests as I requested them.

My folate went above range when taking 400mcg folic acid. I stopped this 6 months ago now. My multuvir does have 200mcg I take this every other day away from the iron. (Only realised tbus quite recently as puzzled why ferritin levels were so slow to rise. ) there was a gap but only 2 hrs.

I've not had the other b vits tested. Apart from b12!!

I had very low vitamin d 2 years ago . Before ill so I only took vitamin d and vitamin c in the winter before b12 def

If levels of high folate can cause headaches. (I didnt know this ) I will definitely get my folate included on my blood test next month.

I'm only taking every other day ferrous fumerate 210 mg. For the last 3 months solgar or Spartans onthe other day. to tty and maintain current ferritin level of 44. (It was 61) when it fell to 20 I was getting symptoms which did resolve with iron. Shaking mainly.

On 'old blood test my norm without any supplements was 61. For ferritin.

Never needed iron on my life before??

I di have vitamin c in juice with meat ans liver ect.

So I will try and get b6 status and folate and magnesium vitamin d ferritin .

Anything else please tell me. Blood test early Frbruary. Otherwise another wait for 3 months at least. Currently on my blood form I have.

Thyroid

Full iron

Ferritin

Lipids?

Fbc

Vitamin d

Magnesium

Not potassium as didnr take a supplement and on 2 tests fine.

B6 (if I can)

Folate without b12(if I can)

Calcium (always been okay.

Anything missed?

Thank again

Yes very tricky when your body out of kilter

*

Foggyme profile image
FoggymeAdministrator in reply to Nackapan

So...the 'anything missed' question...that's a tough one Nackapan!

Theoretically (and ideally) all the vitamins and minerals on a 'multi' are 'testable' though in practice, most rarely are! Some are available on the NHS...and some not. And even where testing is available on the NHS, this is usually reserved (ha) for extreme cases of malabsorption and perhaps only available via hospital consultant request.

You've covered the main 'culprits' in your list above but it might be worth asking your GP if they can do a full vitamin and mineral screen - and see if they can come up with anything more comprehensive (but I'd be surprised if they do).

Just so you get an idea of what range of tests are possible, I'm including a link to a website that contains a comprehensive list of what's testable together with details of the likelihood of it being available via the NHS (though this doesn't mean that a GP would be prepared to offer it!).

At the very bottom of the website there's a link to a private testing lab which your GP can order tests from - if they’re agreeable (no option for non-medics to order). But - you'd have to pay and going for the full range via this route is likely to be extremely expensive. (Note: I'm not advocating for this supplier, intimating that they are any better (or worse) than any others out there, or indeed suggesting that you should do this 😉). So, for information purposes only.

I've checked a few other private suppliers and many seem to offer the 'main culprits' so I think that getting a more comprehensive package from a private test supplier may take a bit of research (if that’s a route you want to go down)...and prove to be quite costly.

So anyway Nackapan, here's the link that contains a list of all possible tests:

stewartnutrition.co.uk/nutr...

Also - think in view of the fact that your folate is over the top of the range, would perhaps be better to stop the multivitamin and mineral tablets then track symptoms (which I understand you do anyway) and see if there is any improvement (getting B6 from a multi may also be a problem too - it's very finely balanced in the body and over-supplementation can cause neurotoxicity) .

Good luck 👍

Nackapan profile image
Nackapan in reply to Foggyme

Thank you

I will have a good think about it all again.

Will get what I can tested on my due bloods as a start.

Read the info you have supplied and more if I can read for that long!!

Gp does seem pretty useless on vitamins but so far she has been open about requests .

I've just recieved an accepted referral for a neuro opthalomogist.

Onwards and upwards hopefully .

Foggyme profile image
FoggymeAdministrator in reply to Nackapan

👍 And good luck with the neuro ophthalmologist x

Nackapan profile image
Nackapan in reply to Foggyme

Thankyou

sea55red profile image
sea55red in reply to Foggyme

Where are the guidelines that state that folic acid supplements should not be taken in the presence of simultaneous B12 deficiency? Mine were : B12 177 ng/L and folate 1,7 ug/L (range 3.9 -20)

Nackapan profile image
Nackapan in reply to sea55red

I think its if you get folate treated first it can mask the b12 deficiency so you can get neurological symptoms un. If you are having b12 treatment then okay to take folic acid.

Thars why folate is tested with b12 on your bloods so that doesn't happen.

Which is right at the beginning.

It's just the further testing g of folate I wanted to get done separately

Foggyme profile image
FoggymeAdministrator in reply to sea55red

Sea55red

Extract from cks.nice.org.uk/anaemia-b12... [my bold]

How should I treat a person with folate deficiency anaemia?

Prescribe oral folic acid 5 mg daily — in most people, treatment will be required for 4 months.

However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent.

Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.

What the above means is that in the presence of folate deficiency, B12 levels should be checked as well to determine if a B12 deficiency exists. If it does (as in your case) then treatment for the B12 deficiency should begin 24-48 hours before treatment for the folic acid deficiency. This is because there are rare cases where neurological damage has occurred if folic acid is given prior to starting treatment for any vitamin B12 deficiency.

Also - as per the above extract - treating a folic acid deficiency without knowing if B12 deficiency exists can result in B12 deficiency going undiagnosed and untreated.

So...it's not that folic acid deficiency should not be treated...just the case that vitamin B12 status should be assessed at the same time so that if there is a B12 deficiency, treatment for that can be commenced just prior to treating any folic acid deficiency.

So...in your case, both your B12 deficiency and folic acid deficiencies should be treated.

sea55red profile image
sea55red in reply to Foggyme

OK thanks - that wording is a bit confusing. I started the folic acid a few days before the first B12 injection. I also thought I read somewhere that low folate can elevate B12 levels and give a false reading? May have imagined it - my head spins with too much info.

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