Folic acid and other supplements - Pernicious Anaemi...

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Folic acid and other supplements

JanD236 profile image
25 Replies

I have monthly B12 injections and I'm looking at improving my health as much as possible.

I've read that taking 5mg folic acid and also vitamins D3/K2 is recommended. Should I take both of these daily or should I take the 5mg folic acid only around the time of my B12 injection?

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JanD236 profile image
JanD236
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25 Replies
wedgewood profile image
wedgewood

Hello JanD236, I believe that the folic acid should be taken daily as also the vitamin D3/K2 All the best to you .

JanD236 profile image
JanD236 in reply to wedgewood

Ok thank you. Just ordered all of those on Amazon

wedgewood profile image
wedgewood in reply to JanD236

Yes, Amazon is very useful!

Granny56 profile image
Granny56

Have you been diagnosed with these specific deficiencies which you medicate or are you just taking suppliments in the hope of feeling better?

JanD236 profile image
JanD236 in reply to Granny56

Just diagnosed with B12 deficiency. However, folate was in the bottom part of the range and I understand that for optimum B12 usage we need to be at the upper end.

Vitamin D (and K) hasn't been tested.

Granny56 profile image
Granny56 in reply to JanD236

You are absolutely correct, however getting the balance right is not so easy and can depend on the cause of your deficiencies. I would advice doing your own research into your particular circumstances and working with your local doctor to achieve the correct balance.

For example, diabetics on Metformin can have B12 and folate deficiencies, therefore a more holistic approach is needed if the person is both diabetic and PA.

Vitamin D is an important hormone/vitamin but too much is also not good. Idealy it would be great if you could go to a doctor with confidence that your particular illness would be treated according to your individual needs. However, in reality this does not happen, you need to become your own expert so that you can work with your doctor to achieve optimum health. Unless you are really confident in your ability to self medicate, I would advise a consultation with your doctor or ask for a specialist consultaion.

Hope this helps and you feel better soon.

ACritical profile image
ACritical in reply to Granny56

I agree, always be careful with self medication. I had a not so nice experience with supplements bought on the internet. Check first if you need them and then only take them for a little while. If you do decide you want to self medicate, I recommend that you start with the minimum level, one supplement at the time and see how your body reacts to that, before adding more supplements and higher doses.

I do have regular blood test (private) and take D3 /K2 regularly , but not 7 days of the week. More in the winter month.

deniseinmilden profile image
deniseinmilden

I would suggest you try a minimum level of one supplement, increase gradually until you feel no improvement within sensible limits and then try dropping the level until you notice a deterioration. That way you will find out what is best for you. Once you have stabilised on that, you could also try introducing something else.

Ideally you should only change one thing at a time so you know what is having each effect.

Good luck: I hope you feel really good soon.

JanD236 profile image
JanD236 in reply to deniseinmilden

Good idea, thank you.

deniseinmilden profile image
deniseinmilden

Everyone is so different: my folate levels have generally been good in testing and despite needing daily jabs and sublingual B12 all the time, I need about 1800mcg (1.8mg folic acid) to keep me well, while some people need 5mg on much less B12.

B9 is another safe vitamin so it's OK to adjust that without major concern.

I'm sure you're aware that some things need more care, one of which is potassium, which I need quite a lot of to stop my hands and feet cramping. This can be harmful in excess.

Too much of something thing can have a negative impact on other metabolites so always be mindful of upsetting the balance of everything!

:-)

Clarealbinson profile image
Clarealbinson

If you Google folic acid you'll see that there are various potential health risks in taking it. chriskresser.com/folate-vs-... plus others. I take

Methylfolate.

JanD236 profile image
JanD236 in reply to Clarealbinson

Hmmm yes....I've ordered 5mg folic acid & think I'll just take this around injection time but when they run out will get methyl folate instead.

fbirder profile image
fbirder in reply to JanD236

I would take 400ug of methyl folate every day (in fact, I do). Little and often will avoid massive peaks and troughs in blood levels.

Harvena profile image
Harvena in reply to Clarealbinson

There is a lot of mis-information regarding folic v folate (and other supplements) on the internet. A well respected group that I follow recommend using either Google Scholar or PubMed for any research as they only offer peer reviewed studies and not all the other cr*p floating around the web.

In practice it seems that the majority of B12 def people do fine on folic acid, for those that do not, start on a lower dose of folate and build up if necessary.

I am not suggesting that the link given is cr*p, but some of the comments certainly seem too simplistic and may not take other factors into account and I would like to see evidence of research for the statement that reads along the lines of increased risk of colon cancer in those supplementing with folic acid, how much of an increase? for instance and from what studies.

fbirder profile image
fbirder in reply to Harvena

Actually, the link given about possible problems with too much folic acid is far from crap. They provide links to the peer-reviewed papers on the actual research that they base their summary on.

If you follow those links and then the papers that also cite those links you'll find that the situation is quite complicated. It seems that low levels of folate/folic acid help prevent colorectal cancer, but high levels of folic acid seem to promote growth of tumours that are already present.

edgrover profile image
edgrover in reply to fbirder

Yes exactly. There doesn't appear to be a maximum dose of methylfolate. There does appear to be a maximum dose of folic acid. Folinic acid doses can go a little higher but not much.

I took folic acid for many years, averaging 1000mcg or slightly less every day. I got to a certain level on my MMA and then no further and I didn't see a reversion on the neurological lesions past a certain point. Methylfolate otoh has been dramatic.

This isn't really a YMMV type of situation. Folic acid is effective in small (<400mcg) doses, but only if methylfolate is present in your tissues already. So why is folic acid so prevalent? Because it's the shelf-stable oxidized form of the vitamin. It can be easily sprayed on cereal. It's cheap to make. And when mass supplementation started in the 70s it was the compromise, premised on a limit of no more than 1600mcg a day per person. Over that and it starts to build up and, rather than contribute to the methylation cycle, it blocks methylfolate and starts to oxidize tissues.

You'll be ok with the bottle you ordered. But try methylfolate. You'll see an improvement in you're MMA and in b12 absorption.

The same thing goes for cyanocobalamin, btw. It's the compromise choice, and it's absorbed just enough to prevent clinical PA. It will keep you in a subclinical state.

JanD236 profile image
JanD236 in reply to edgrover

Can I ask which form of cobalamin you use? I have whatever my Nhs doctor gives me once a month and then I use a sublingual methyl B12 if I've done heavy exercise, had an alcoholic drink (not often) or feeling I'm running out of steam.

As for the folate I think I'll try and keep up natural sources from my diet as a priority!

engels profile image
engels in reply to edgrover

I do wish that those who advocate methylfolate as the "best" option would also warn that it can have some nasty side effects on some people, even in very small doses. There's plenty of information on the web but here's an example:

mthfr.net/methylfolate-side...

JanD236 profile image
JanD236 in reply to engels

Ok thanks. So confusing but it seems that I will use the 5mg folic acid I've already ordered the day before, day of and day following my monthly B12 injection.

On other days I'll aim to eat a folate (& potassium) rich diet and supplement small amounts of folic acid/methyl folate (rather than taking larger doses).

Thanks for your help.

edgrover profile image
edgrover in reply to JanD236

I would return the 5mg of folic acid. I would get 1000mcg of methylfolate and take that for a couple of years, and make sure you get an MMA test every year.

If you still eat bread, you'll get more than enough folic acid. Its the folate you need.

edgrover profile image
edgrover in reply to engels

You think the effects of 5000mcg of folic acid right out of the gate would be better?

Let's think this through. Methylfolate is the active form of the vitamin.

If all of the folic acid converts 100% to methylfolate then the person taking the folic acid will experience the same effects you linked to - i.e. one of the three possibilities.

If the folic acid doesn't convert to methylfolate then (a) where is the unmetabolized stuff going and (b) why are you taking something that doesn't work? We know only 400-800mcg of folic acid converts to methylfolate anyway. So what happens to the oxidized unusable 4400mcg that looks like folate but doesn't work like folate?

I would NOT recommend 5000mcg of methylfolate or folic acid to start with. I don't think JanD236 should be taking that much to start with of anything. 1000mcg of either is a good place to go. But if you're going to increase the dose, increase the methylfolate. Keep taking folic acid and folinic acid until you get a genetic test, by all means. I'm 100% behind the idea of maintaining the diversity of your sources. (You should be eating salad for breakfast, lunch and dinner too, as well as a decent dose of red meat and the occasional meal of steamed clams.)

But I really wish people who make snarky links to warnings would think through the big picture.

JanD236 profile image
JanD236 in reply to edgrover

It sounds like we need a proper study & gp level knowledge as so many people are taking big doses of all these vitamins with possibly inadequate knowledge. The PA Facebook support group are very pro 5mg folic acid for example.

I certainly agree with the salad advice, washed down with some orange juice (or while oranges.....)

Thanks all for your input and advice. Much appreciated!

fbirder profile image
fbirder in reply to engels

I just don't understand why sites like that can't link to the research that supports their claims. Every peer-reviewed paper I've been able to find over the last 20 minutes (about 15) say that side effects from L-methyl folate were the same as placebo.

JanCymru profile image
JanCymru

Hi JanD236, the Vitamin D3 and combination of K2 are the gold standard for bone health (we all need the D3 in the northern hemisphere due to the lack of good light, and the K2 takes your dietary calcium from the blood and puts is where it can do some good, i.e. the bones), so as you are female you are doing the right thing to ensure good bone health for later in life. Especially important with Pernicious Anaemia, and also if you have any other conditions such as digestive issues, Coeliac etc., Hope that helps!

JanCymru profile image
JanCymru in reply to JanCymru

Bless you! Yep, done my background on the bone issue, plus Pilates and good power walking!

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