How to fight refeeding syndrome?

[yellowspain]

Hello. In another post I have explained that although I need methylated vitamins b9/b12 (they are the only ones I tolerate), around the third day I start to get worse. Reading Freddd's posts, I have two options: that it is a functional folate deficiency or refeeding syndrome.

I started taking a multivitamin (Thorne), on the first day, I noticed how my inflammation decreased, but again on the third day, it got worse again, just like with the methylated B vitamins.

My questions, I don't know if they have answers, but how is it possible to fight refeeding syndrome? How is it possible to identify a deficiency among all the vitamins, minerals, amino acids that are necessary in the body? I know that this is the only path to recovery, but it seems impossible to decipher the enigma.

 

[Carl]

Re-feeding syndrome will usually lower Potassium, Magnesium and sometimes Phosphate and possible affect other vitamines and nutrients. The first two will definitely need increasing in most sufferers when they supplement and it is because of the high levels of metabolic stress on the body. The rest might need increasing or supplementing in some people but not others.

It's not a path to recovery, it's just needed to make things more tolerable until a cure arrives. Personally I don't trust the drug companies who want people to take long term medication to hide the symptoms which they don't want solved. That protects their profits and they are very active in doing this from what I am aware of.

Try to induce re-feeding syndrome and then have a blood test should give an indication on what is affected. I recently had a blood test which showed low potassium. Try and include the other electrolytes in a blood test so you know what is affected in your body and blood. Having a complete blood analysis of all nutrients might also help while you are taking the supplements so you know how they are affecting you and what blood levels they produce.

Some people use hair mineral analysis. I don't know much about that TBH and I don't know whether it is reliable. It's meant to be less changeable than blood and can give a picture of more long term deficiency. It might be worth you looking at it.

@Mary has gone in to this with what she needed to do so it might be worth reading her posts about this subject.

 

[Mary]

@yellowspain - one of the most common refeeding syndrome reactions is for one's potassium to become quickly depleted, especially when taking folate and methylcobalamin. There are a ton of posts on this forum about people who needed to start taking potassium after starting folate and B12.

Also, I again urge you to read this post which explains why most of us need more potassium when we start methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

And - again - read the first part of this which explains what refeeding syndrome is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

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.1

As you can see, it says that hypophosphataemia (low phosphate) is the hallmark of refeeding syndrome, but other common imbalances are with thiamine, potassium and magnesium.

And from what I have seen here, the most common deficiency for persons with ME/CFS is potassium. I suggest you get some tomato juice or low-sodium V-8 (vegetable juice) and drink several glasses. These are high in potassium and often people will feel noticeably better after a few hours. But you have to drink enough. Eating a banana probably would not be enough to make much of a difference.

And if this helps you, then you might consider getting a potassium supplement.

Taking thiamine caused my phosphorous to drop, and I learned through experimentation that I needed to take phosphorous when taking thiamine.

 

[yellowspain]

@yellowspain - one of the most common refeeding syndrome reactions is for one's potassium to become quickly depleted, especially when taking folate and methylcobalamin. There are a ton of posts on this forum about people who needed to start taking potassium after starting folate and B12.

Also, I again urge you to read this post which explains why most of us need more potassium when we start methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

And - again - read the first part of this which explains what refeeding syndrome is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/




As you can see, it says that hypophosphataemia (low phosphate) is the hallmark of refeeding syndrome, but other common imbalances are with thiamine, potassium and magnesium.

And from what I have seen here, the most common deficiency for persons with ME/CFS is potassium. I suggest you get some tomato juice or low-sodium V-8 (vegetable juice) and drink several glasses. These are high in potassium and often people will feel noticeably better after a few hours. But you have to drink enough. Eating a banana probably would not be enough to make much of a difference.

And if this helps you, then you might consider getting a potassium supplement.

Taking thiamine caused my phosphorous to drop, and I learned through experimentation that I needed to take phosphorous when taking thiamine.

Thank you very much for your answer. I know I experience some kind of feedback problem. I have read the potassium information, but I don't know if I fit the symptoms. On the third day of taking b9 and b12, I start to get worse: depression, migraine increase...

The other day while I was lying down my legs went into spasm. I don't know if all the symptoms fit with potassium or other vitamins or if I have a paradoxical folate insufficiency. What symptoms did you have with potassium and phosphorus?

 

[Mary]

The other day while I was lying down my legs went into spasm.

This is very similar to what happens to me - I will get a severe spasm in my feet or ankles. Also I will get quite tired etc.

Why not do the easy thing and get some vegetable juice - tomato juice or V-8 - and drink 3 or 4 glasses, and then see how you feel in a couple of hours. From what I've seen here on Phoenix Rising, low potassium is the most common refeeding syndrome reaction with folate and B12. I wouldn't worry about paradoxical folate deficiency right now.

About the phosphorous - I did not get low phosphorous when starting folate and B12. However, I did get low phosphorous when I started taking thiamine.

So for right now, I think it would be best to try one thing at a time. I never knew what was going on until I tried to fix it and I found that potassium took care of my feet/leg cramps and severe fatigue after starting the methylfolate.

 

[yellowspain]

This is very similar to what happens to me - I will get a severe spasm in my feet or ankles. Also I will get quite tired etc.

Why not do the easy thing and get some vegetable juice - tomato juice or V-8 - and drink 3 or 4 glasses, and then see how you feel in a couple of hours. From what I've seen here on Phoenix Rising, low potassium is the most common refeeding syndrome reaction with folate and B12. I wouldn't worry about paradoxical folate deficiency right now.

About the phosphorous - I did not get low phosphorous when starting folate and B12. However, I did get low phosphorous when I started taking thiamine.

So for right now, I think it would be best to try one thing at a time. I never knew what was going on until I tried to fix it and I found that potassium took care of my feet/leg cramps and severe fatigue after starting the methylfolate.

Thank you so much. Did you experience detox when you improved by taking potasium? Aside from the symptoms I mentioned, after three days of taking methylfolate, I had an increase in "detox" symptoms that I attributed to folate deficiency.

 

[Mary]

Thank you so much. Did you experience detox when you improved by taking potasium? Aside from the symptoms I mentioned, after three days of taking methylfolate, I had an increase in "detox" symptoms that I attributed to folate deficiency.

@yellowspain - no, I did not have detox symptoms after taking potassium. The potassium, whether in vegetable juice or capsules, only made me feel better. They made me feel better because low potassium was causing the unpleasant symptoms which started after I started taking folate.

When I first started taking methylfolate, I felt better - my energy improved - it was great. And then a day or 2 later I was hit by severe fatigue and felt awful. And fortunately I knew that this was most likely caused by low potassium. Please read the post I linked above which explains why we usually need more potassium after starting methylation.

I think you were most likely incorrect when you attributed your unpleasant symptoms to "detoxing". And I don't think your unpleasant symptoms were a symptom of folate deficiency. Rather, I would bet that your unpleasant symptoms were caused by low potassium.

I don't think anyone can say for sure what is going on with you. I'll say it again, I strongly urge you to try the vegetable juice - drink a lot of it - and see how you feel. It's a simple experiment which won't hurt you and very likely might help you a lot.

 

[yellowspain]

@yellowspain - no, I did not have detox symptoms after taking potassium. The potassium, whether in vegetable juice or capsules, only made me feel better. They made me feel better because low potassium was causing the unpleasant symptoms which started after I started taking folate.

When I first started taking methylfolate, I felt better - my energy improved - it was great. And then a day or 2 later I was hit by severe fatigue and felt awful. And fortunately I knew that this was most likely caused by low potassium. Please read the post I linked above which explains why we usually need more potassium after starting methylation.

I think you were most likely incorrect when you attributed your unpleasant symptoms to "detoxing". And I don't think your unpleasant symptoms were a symptom of folate deficiency. Rather, I would bet that your unpleasant symptoms were caused by low potassium.

I don't think anyone can say for sure what is going on with you. I'll say it again, I strongly urge you to try the vegetable juice - drink a lot of it - and see how you feel. It's a simple experiment which won't hurt you and very likely might help you a lot.

Thank you. I have stopped taking the supplements and so far the symptoms have disappeared. I read a post of yours, in which you said that until you increased the amount of folate you took you did not improve. What were your symptoms of folate deficiency despite being supplemented with this vitamin?

 

[Mary]

@yellowspain - I think lack of energy was my biggest symptom of folate deficiency. My energy increased very quickly once I started taking the folate. And then my energy went very quickly downhill, with other negative symptoms, because folate increased my need for potassium - it caused my body to use more potassium so it caused a functional potassium deficiency, which was quickly remedied when I started taking potassium.

Your symptoms may have disappeared because you no longer needed extra potassium. It doesn't mean this is a good thing. If your symptoms were caused by low potassium then I believe you probably did need the folate, and quite likely needed extra potassium.

 

[JES]

Those are not the only two options for why you got worse from B vitamins. Based on the experience of myself and others on this forum, quite a few of us have poor tolerance to B vitamins and methylated forms in particular.

The time response of how you first get better and then worse is how I react to many immune stimulating supplements. For me it has nothing to do with B vitamins in particular. I usually feel better the first day or two when I start a new supplement and then when homeostasis or some kind of steady-state is reached, I feel worse. Then again after quitting "immune stimulating supplement X" I feel better for a day or two until I get back to baseline.

 

[JES]

How is it possible to identify a deficiency among all the vitamins, minerals, amino acids that are necessary in the body? I know that this is the only path to recovery, but it seems impossible to decipher the enigma.

This is an entire other matter. Well, by measuring blood levels I suppose you get a rough idea. I did this at a functional medicine doctor, but it ended up very expensive, so it's something you have to keep in mind.

Even then you cannot get an exact picture as Ron Davis' work has shown that intracellular levels of a mineral or vitamin could be low even though blood levels are fine. For example high blood levels of an inactive form of vitamin B6 like I had on a test could actually indicate functional B6 deficiency.

 

[yellowspain]

@yellowspain - I think lack of energy was my biggest symptom of folate deficiency. My energy increased very quickly once I started taking the folate. And then my energy went very quickly downhill, with other negative symptoms, because folate increased my need for potassium - it caused my body to use more potassium so it caused a functional potassium deficiency, which was quickly remedied when I started taking potassium.

Your symptoms may have disappeared because you no longer needed extra potassium. It doesn't mean this is a good thing. If your symptoms were caused by low potassium then I believe you probably did need the folate, and quite likely needed extra potassium.

What's dose of methylfolate did you take?

 

[yellowspain]

This is an entire other matter. Well, by measuring blood levels I suppose you get a rough idea. I did this at a functional medicine doctor, but it ended up very expensive, so it's something you have to keep in mind.

Even then you cannot get an exact picture as Ron Davis' work has shown that intracellular levels of a mineral or vitamin could be low even though blood levels are fine. For example high blood levels of an inactive form of vitamin B6 like I had on a test could actually indicate functional B6 deficiency.

Thanks.The problem is that I have a b9 deficiency and I have to correct it. Did the doctor you have worked with help you identify any deficiency and improve?


What symptoms do you have? Mine are fundamentally. neurological.

 

[Mary]

What's dose of methylfolate did you take?

I take three 1700 mcg. tablets a day - but we're all different. This would be too much for some, not enough for others. What did your doctor tell you to take?

The title of your thread says "How to fight refeeding syndrome" - but I think you've got it wrong. You don't fight refeeding syndrome - it's something that gets treated. I'm not sure you understand what refeeding syndrome is.

Yes, if you experience refeeding syndrome (e.g. low potassium which can have severe effects) and you stop taking the folate supplement which caused it, your low potassium symptoms will go away, but that doesn't fix anything. You'll still need the folate.

So the important thing is not to make the refeeding syndrome symptoms go away by stopping a supplement (folate) that you need, but, rather, to treat the refeeding syndrome symptoms - e.g., low potassium - by adding in the extra potassium you may need.

 

[yellowspain]

I take three 1700 mcg. tablets a day - but we're all different. This would be too much for some, not enough for others. What did your doctor tell you to take?

The title of your thread says "How to fight refeeding syndrome" - but I think you've got it wrong. You don't fight refeeding syndrome - it's something that gets treated. I'm not sure you understand what refeeding syndrome is.

Yes, if you experience refeeding syndrome (e.g. low potassium which can have severe effects) and you stop taking the folate supplement which caused it, your low potassium symptoms will go away, but that doesn't fix anything. You'll still need the folate.

So the important thing is not to make the refeeding syndrome symptoms go away by stopping a supplement (folate) that you need, but, rather, to treat the refeeding syndrome symptoms - e.g., low potassium - by adding in the extra potassium you may need.

Hello. Yes, I understand what refeeding syndrome is. What worries me is that when I start taking methylfolate again, I will start to get worse again, my potassium intake will increase and my symptoms will not improve, because the refeeding syndrome I suffer from is due to any other mineral, vitamin or amino acid.

Whenever I have taken a supplement and gotten worse, I have not been able to recover or return to my previous state. On the other hand, I wonder if what is really happening to me is a paradoxical folate deficiency.

I have a serious vitamin B9 deficiency, as my tests showed. The doctor prescribed me 5mg of folic acid which makes me feel worse, then 15mg of folinic acid which also made me feel bad. So I started taking methylfolate on my own (800mcg).

The health system in my country is public and they only prescribe pharmaceutical products. Not dietary supplements such as methylfolate.

The doctor only told me to take the methylfolate every other day, because according to him the dose was very high, which I do not understand, since the doses of folic and folinic acid that they prescribed were much higher. Since the supplement (methylfolate) is not within the health system, I do not know if the doctor's recommendation is because he does not want problems making recommendations about a non-health product or if it has some kind of basis.

Also, unlike what you mentioned, I have barely noticed an increase in energy with methylfolate, the improvement only lasted a few days, then it faded. What I mean is that I have not experienced a strong or striking restart, which makes me think that the cycle has started to work and therefore my potassium needs have increased.

Among the adverse symptoms of methylfolate are depression and migraine and I don't see how these two symptoms fit into potassium deficiency.

 

[JES]

Thanks.The problem is that I have a b9 deficiency and I have to correct it. Did the doctor you have worked with help you identify any deficiency and improve?


What symptoms do you have? Mine are fundamentally. neurological.

Neurological, yes. Brain fog, small fiber neuropathy and autonomic nervous system dysfunction that developed into quite bad orthostatic intolerance, which I now have under better control.

B vitamins were one of the first things I tried when my symptoms developed over a decade ago. They didn't do anything other than worsen my sleep and give me what seemed like an artificial boost at first, which later faded. The only form of B vitamin I can tolerate in much higher than RDA dose is direct injection of B12. It causes less side effects for me than taking it orally or sublingually, which doesn't make a ton of sense.

Have you then had a blood test to confirm B9 deficiency?

 

[yellowspain]

Neurological, yes. Brain fog, small fiber neuropathy and autonomic nervous system dysfunction that developed into quite bad orthostatic intolerance, which I now have under better control.

B vitamins were one of the first things I tried when my symptoms developed over a decade ago. They didn't do anything other than worsen my sleep and give me what seemed like an artificial boost at first, which later faded. The only form of B vitamin I can tolerate in much higher than RDA dose is direct injection of B12. It causes less side effects for me than taking it orally or sublingually, which doesn't make a ton of sense.

Have you then had a blood test to confirm B9 deficiency?

Yeah. My tests show vitamin B9 deficiency. That's why I don't know what to do, I have to take it according to the doctor for three months, but when I've been taking it for three days it gets worse, which I attribute either to refeeding syndrome or to paradoxical folate deficiency.

 

[JES]

Yeah. My tests show vitamin B9 deficiency. That's why I don't know what to do, I have to take it according to the doctor for three months, but when I've been taking it for three days it gets worse, which I attribute either to refeeding syndrome or to paradoxical folate deficiency.

Okay, afraid I can't help you much more as I never got the hang of B vitamins and how I was supposed to take them without my neuropathy getting worse and other weird side effects. You *may* have some luck with niacin/niacinamide as that one is supposed to promote undermethylation, i.e., the opposite of what B9 and B12 does according to the over/undermethylation theory.

I also recall that @Freddd who is the OG member who has written a lot in this forum section had some success with taking lithium that reduced his need for large doses of B12.

 

[Mary]

What worries me is that when I start taking methylfolate again, I will start to get worse again, my potassium intake will increase and my symptoms will not improve, because the refeeding syndrome I suffer from is due to any other mineral, vitamin or amino acid.

@yellowspain - if you look at the article I linked above, you'll see it talks about refeeding syndrome potentially involving phosphorous, potassium, thiamine and magnesium. It does not involve all the vitamins and minerals and amino acids. That would be very difficult to sort out.

There's a reason Freddd wrote so much about potassium, and there's a reason there's a whole thread by richvank (which I also linked above) talking about why potassium is so important when starting methylation. It's not a coincidence. That thread also includes a study showing that people with ME/CFS have trouble maintaining potassium levels.

Many many people on Phoenix Rising have needed extra potassium when taking B12 or methylfolate. It's not just any old vitamin or mineral - it's very specific. You can safely test this by drinking several glasses of vegetable juice which is high in potassium.

I have barely noticed an increase in energy with methylfolate, the improvement only lasted a few days, then it faded.

This is exactly what happens with refeeding syndrome - an initial improvement followed by negative effects as one's potassium drops. It takes a few days for that to happen.

Among the adverse symptoms of methylfolate are depression and migraine and I don't see how these two symptoms fit into potassium deficiency.

These very well can be symptoms of potassium deficiency. Just google potassium headaches and you'll see it. Potassium deficiency can make you very tired (happened to me) and of course depressed then too. It's hard not to be depressed when you feel so crappy.

No one can guarantee results for you. But I've never heard of anyone being harmed by drinking tomato juice unless they're allergic. I suggest you forget about paradoxical folate deficiency for now and concentrate on the most likely cause of negative symptoms, after first feeling better and then worse when starting to take folate.

 

[L'engle]

The other day while I was lying down my legs went into spasm. I don't know if all the symptoms fit with potassium or other vitamins or if I have a paradoxical folate insufficiency. What symptoms did you have with potassium and phosphorus?

I find potassium leg cramps feel as though there is a pressure point in the calf muscle, as though someone were pressing into it in one spot. Magnesium leg cramps for me feel more like the entire calf muscle is contracting.

Not much to go on but maybe a start.