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How to deal with low folate?

jason30

Senior Member
Messages
516
Location
Europe
Hi all,
A regular blood test last week showed low folate.
Since 1,5 year I take b12 injections (once a week). I guess this makes my folate lower.
I tried folinic acid a few times (since I cant tolerate methyl folate) and this gives me some side effects 2/3 days after intake; depressing and heavy feeling and more fatigue (detox?).

Does someone have any tips regarding the side effects or use of folinic acid? The side effects caused me to stop with folinic acid.

Thanks for thinking along.
 
Messages
70
Location
Scandinavia
There are two types beside folinic acid: folic acid and methylfolate. Methylfolate is considered more effective since no conversion is needed in the body, but some people can't handle it, either because they have a gene variety (COMT) that gives them mood swings or because it is too effective (refeeding syndrome).

Some people claim that folic acid is bad and unnatural and that it won't work.

Folic acid works fine for me. I take 5 mg a day, but I had to go low and slow in the beginning.

I think you'll just have to try and see what works for you.
 

jason30

Senior Member
Messages
516
Location
Europe
There are two types beside folinic acid: folic acid and methylfolate. Methylfolate is considered more effective since no conversion is needed in the body, but some people can't handle it, either because they have a gene variety (COMT) that gives them mood swings or because it is too effective (refeeding syndrome).

Some people claim that folic acid is bad and unnatural and that it won't work.

Folic acid works fine for me. I take 5 mg a day, but I had to go low and slow in the beginning.

I think you'll just have to try and see what works for you.
Thank, which side effects do you have when you are taking too much folic acid?
 
Messages
70
Location
Scandinavia
Thank, which side effects do you have when you are taking too much folic acid?
Heart palpitations, mostly. Like electrolyte trouble. And it was only in the beginning.

Looking back, it was probably refeeding syndrome, where the healing process makes your potassium tank.
 
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perchance dreamer

Senior Member
Messages
1,701
I had given up on methylfolate supplements because they always gave me insomnia, even taken first thing in the morning. Then my P.A. suggested Doctor's Best Fully Active Folate, which contains the Quatrefolic form.

It comes in 2 different strengths, 400 mcg and 800 mcg. Since I have such a sensitive system, I'm on the 400 mcg and take it first thing in the morning. For a few days I felt a little keyed up from it, but that stopped. This is considered a low dose.
 

Mary

Moderator Resource
Messages
17,398
Location
Southern California
Since 1,5 year I take b12 injections (once a week). I guess this makes myF folate lower.
I tried folinic acid a few times (since I cant tolerate methyl folate) and this gives me some side effects 2/3 days after intake; depressing and heavy feeling and more fatigue (detox?).

Why can't you tolerate methylfolate - what are the symptoms it causes for you?

Folinic acid is a form of folate and can cause a refeeding syndrome reaction just like methylfolate can. Refeeding syndrome is defined as:

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia.

https://www.ncbi.nlm.nih.gov/pmc/ar...ally,and metabolic and clinical complications

A very common refeeding syndrome reaction to folate is for one's potassium levels to drop a lot. This is because a malnourished person's body has adapted to subpar levels of nutrients and electrolytes and when a nutrient such as folate is replenished, it requires more potassium, causing a functional potassium deficiency.

Initially methylfolate gave me a good boost in energy but that was quickly followed day or 2 later by severe fatigue and a heavy feeling. I had read about the potential for my potassium to drop, so I started taking potassium, titrating up to 1000 mg a day over a couple of days, in divided doses, until the fatigue abated, and this allowed to keep takingl the methylfolate, which I needed, and still need. And I still have to take supplemental potassium every day.

I suggest you try drinking a few glasses of low-sodium V-8 or tomato juice - high in potassium - when you take folate or folinic acid, and see if this helps with your symptoms, and if it does, you can decide whether or not to take a potassium supplement or try to get it in food sources, or both.
 

jason30

Senior Member
Messages
516
Location
Europe
Heart palpitations, mostly. Like electrolyte trouble. And it was only in the beginning.

Looking back, it was probably refeeding syndrome, where the healing process makes your potassium tank.
That's great that potassium works for you. I have a lot of heart palpitations, but I can't figure it out if this is due too high potassium or too low. I have all signs that it's too low, but my body says too high. So I need to invest some time into my kidneys, because people with kidney diseases don't excrete potassium out of the body.

Do you take a potassium supplement?
 

jason30

Senior Member
Messages
516
Location
Europe
I get pain in my body, like pem pain, (like flue pain).
I can’t do any b vitamins, I think I’ve tried them all..
Sorry to hear :( do you recognize the pain as inflammation in the known area's ?
Like when I take methyl folate for example, then I always get inflammation in my knees (which could because there are toxins/metals in the body released).
 

jason30

Senior Member
Messages
516
Location
Europe
Why can't you tolerate methylfolate - what are the symptoms it causes for you?

Folinic acid is a form of folate and can cause a refeeding syndrome reaction just like methylfolate can. Refeeding syndrome is defined as:



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/#:~:text=Refeeding syndrome is a potentially,and metabolic and clinical complications

A very common refeeding syndrome reaction to folate is for one's potassium levels to drop a lot. This is because a malnourished person's body has adapted to subpar levels of nutrients and electrolytes and when a nutrient such as folate is replenished, it requires more potassium, causing a functional potassium deficiency.

Initially methylfolate gave me a good boost in energy but that was quickly followed day or 2 later by severe fatigue and a heavy feeling. I had read about the potential for my potassium to drop, so I started taking potassium, titrating up to 1000 mg a day over a couple of days, in divided doses, until the fatigue abated, and this allowed to keep takingl the methylfolate, which I needed, and still need. And I still have to take supplemental potassium every day.

I suggest you try drinking a few glasses of low-sodium V-8 or tomato juice - high in potassium - when you take folate or folinic acid, and see if this helps with your symptoms, and if it does, you can decide whether or not to take a potassium supplement or try to get it in food sources, or both.
Hi Mary, thank you for the extensive and informative reply.
Methyl sups releases somehow toxins or metals in my body, and this put my body in flame. I get achy joints/inflammation (especially knees), anxiety and palpitations and don't feel well (too much). Liver can't handle it. I don't have this with folinic acid.
I have read that under methylators don't do well with folate (lowers serotonin), this might be the case by me.

I am also certain that refeeding syndrome plays a role. Therefor I always take electrolytes on days around the B12 injection (potassium, sodium, magnesium). I also take a B complex and B1 seperately. Around the days I eat food which are high in potassium (avocado) and magnesium (dark chocolate). Also freezed beet root for minerals. And also phosphor by eating walnuts and kefir.

I am still figuring it out if I have too high potassium or too low potassium in my body, my kidneys plays a role in this.
Everytime I take the electrolytes, the next day I have too pee hundred times. :) Don't know what is causing this, but somehow a disbalance or my kidneys.

Which form of potassium supplement do you take?

Thanks again.
 
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Hufsamor

Senior Member
Messages
2,787
Location
Norway
Sorry to hear :( do you recognize the pain as inflammation in the known area's ?
Like when I take methyl folate for example, then I always get inflammation in my knees (which could because there are toxins/metals in the body released).
I hurt more all over 😬
 

Mary

Moderator Resource
Messages
17,398
Location
Southern California
Which form of potassium supplement do you take?
I take potassium glycinate - 200 mg with each meal, 200 mg before bed and 200 mg more middle of the night. But we're all different - some people need more and some need less potassium.

So I need to invest some time into my kidneys, because people with kidney diseases don't excrete potassium out of the body.

Do you have kidney disease? If you don't, low-sodium V-8 or tomato juice seems to be a safe way to get potassium. And if this helped with your symptoms, then you could try a potassium supplement if you like.,
 

Marylib

Senior Member
Messages
1,158
I tend to agree with those who suggest foods that have folate. That being said, not everyone with ME (and maybe others) can digest or utilize the nutrients that need to pass through the digestive system. I reckon that those of us who can actually eat are fortunate. But yes - I have been told that if one is using B-12 injections, one must make sure there is an adequate supply of folate. Good luck and best wishes to you.
 
Messages
70
Location
Scandinavia
That's great that potassium works for you. I have a lot of heart palpitations, but I can't figure it out if this is due too high potassium or too low. I have all signs that it's too low, but my body says too high. So I need to invest some time into my kidneys, because people with kidney diseases don't excrete potassium out of the body.

Do you take a potassium supplement?

I'm on the food team too. I'ts safer and you get a lot of other nutrients from potassium rich food. But I also find that it is quite a job to keep a diet where i get 5000 mg of potassium every day. Getting it from stuff you can drink like juices and milk or yogurt makes it easier.

I am going to try what @Mary suggests for supplements though. I know that I need a lot, so it is unlikely that I would overdose.

I wonder if you have had blod tests for potassium and also if you have any kind of known kidney problems?
 
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Viala

Senior Member
Messages
640
Legumes are loaded with vitamin B9, I wholeheartedly recommend them.

By dry weight, chickpeas and mung beans have the highest content, about 600mcg per 100g, navy beans 400mcg, green lentils 480mcg and red lentils 200mcg. You can also buy chickpea flour that's 440mcg and make flatbreads or banana bread with it. I did a whole year of high legumes diet so I managed to get 800mcg of vitamin B9 from food, sometimes even more and it was delicious. Falafel is awesome.

As long as legumes are soaked, rinsed and cooked long enough, I found they're easy to digest. Red split lentils in my experience are good to start with. Regular veggies like cabbage also are a good source, but it is usually below 80mcg. You can eat liver which is very rich in vitamin B9, 590mcg for chicken liver and duck liver has even more, they also have a lot of B12. Many people can't tolerate different B9 supplements, so there's always food.
 
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jason30

Senior Member
Messages
516
Location
Europe
I take potassium glycinate - 200 mg with each meal, 200 mg before bed and 200 mg more middle of the night. But we're all different - some people need more and some need less potassium.



Do you have kidney disease? If you don't, low-sodium V-8 or tomato juice seems to be a safe way to get potassium. And if this helped with your symptoms, then you could try a potassium supplement if you like.,
Thanks.
I suspect kidney disease. Every time I take potassium, or something like cream of tartar with a lot of potassium, I have to pee a lot, constantly. I don't retain fluid, when I drink then I have to pee within 5 minutes. Maybe an electrolyte imbalance can cause this as well?
And days after intake I get irregular heartbeat and chest pain/pressure, short breath. I also have high BP.
A regular blood check in January showed creatinine 76. That's ok.

But the blood check also showed low hemaglobin. I have low hemaglobin for years, my doc thought the low b12 caused it. But after taking b12 injections this didn't solved it. So I am now looking into low folate, low iron and kidney disease. Hopefully it's the iron or folate!
I have constantly pressure on the chest and heart palpitations.
 

jason30

Senior Member
Messages
516
Location
Europe
I tend to agree with those who suggest foods that have folate. That being said, not everyone with ME (and maybe others) can digest or utilize the nutrients that need to pass through the digestive system. I reckon that those of us who can actually eat are fortunate. But yes - I have been told that if one is using B-12 injections, one must make sure there is an adequate supply of folate. Good luck and best wishes to you.
Thanks Mary
 

jason30

Senior Member
Messages
516
Location
Europe
I'm on the food team too. I'ts safer and you get a lot of other nutrients from potassium rich food. But I also find that it is quite a job to keep a diet where i get 5000 mg of potassium every day. Getting it from stuff you can drink like juices and milk or yogurt makes it easier.

I am going to try what @Mary suggests for supplements though. I know that I need a lot, so it is unlikely that I would overdose.

I wonder if you have had blod tests for potassium and also if you have any kind of known kidney problems?
I suspect kidney disease, something I am gonna discuss further with the doc to get this researched properly.