How to fight refeeding syndrome?

[yellowspain]

@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.




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.



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.

Hello. Thanks for answering. I have tried drinking coconut water and I have not noticed any improvement. So I don't think potassium is the problem.

 

[Mary]

Hello. Thanks for answering. I have tried drinking coconut water and I have not noticed any improvement. So I don't think potassium is the problem.

You might be right but it's also possible you needed more potassium. I had to titrate up to 1000 mg a day (in divided doses) to relieve my symptoms of low potassium, and I've had to keep taking it ever since 2010. Just recently I've had to increase my potassium to around 1500 mg a day. I don't know why - it almost doesn't matter - I just do what i need to do.

Some people here need more than I do.

 

[yellowspain]

You might be right but it's also possible you needed more potassium. I had to titrate up to 1000 mg a day (in divided doses) to relieve my symptoms of low potassium, and I've had to keep taking it ever since 2010. Just recently I've had to increase my potassium to around 1500 mg a day. I don't know why - it almost doesn't matter - I just do what i need to do.

Some people here need more than I do.

Thanks for responding. I've tried taking potassium from a supplement and instead of getting better, I got worse, so I'm ruling out the potassium.

 

[pamojja]

Don't respond if you don't feel like. But the general advice, especially to ME/CFS because of unexpected sensitivities, is: 'Start low, go slow', with supplementation. Because one could react badly also to a non-related additive, binder or filler, the rarefied chemical of a nutrient often not found in foods, of a particular supplement and certain dose.

I've tried taking potassium from a supplement and instead of getting better, I got worse, so I'm ruling out the potassium.

Could be wrong, but sounds like you didn't start low and go slow, but took a full dose right away. Such a one-time worsening doesn't rule out even a very severe deficiency of potassium. It could be just a non-causal association, it could be the particular form of supplemental potassium, or its dose. It could be additives.

I'll say it again, I strongly urge you to try the vegetable juice - drink a lot of it - and see how you feel.

I think there are obvious reasons why Mary advises against 'start low and go slow' here. Dietary items are usually better tolerated, satiation alone prevents going too fast. A sensitivity reaction could prevent a stronger reaction already with the first gulp. Additives are usually less weird, as in pill or capsules, of any odd supplement company. The potassium isn't in a rarefied chemical, the body maybe never encountered before with foods.

 

[Mary]

@pamojja - overall I agree with your post, but I have never advised against "start low and go slow" with supplements. I've said several times that I titrated up - went slowly - over a couple of days to get the right dose of a potassium supplement for me. And I almost always suggest that people try low-sodium V-8 or vegetable juice first - most people from what I see can tolerate this quite well, and it can give you a good idea if the problem is low potassium or not. I suggest several glasses because if one is dealing with refeeding syndrome, I don't think one glass would be enough to alleviate symptoms and I would hate to see someone miss this because they didn't get enough potassium.

I started with 200 mg of potassium three times a day, and titrated up over a couple of days to 1000 mg a day, when my severe fatigue and associated low potassium symptoms finally abated. The RDA for potassium is around 4700 mg so my 1000 mg was roughly 25% of the RDA. I'm now taking a bit more.

I've tried taking potassium from a supplement and instead of getting better, I got worse, so I'm ruling out the potassium.

Again, the dose is very important. If you just take one or 2 potassium capsules, which are always 99 mg. each (at least in the U.S.), that's a very low dose and would probably not be enough and a person might very well continue to get worse.

 

[yellowspain]

Thanks for answering. I have followed the method of going slowly. When I test any vitamin or mineral, I open the capsule and place a small amount in my hand. I have already said that I have a serious deficiency of vitamin B9 and despite this, I started taking only half a quarter of a pill (800mcg), from there I have been increasing. I have a dilemma, because the forum talks about potassium deficiency, but this requires a restart and I have not experienced it. Now I have three possibilities before me:
. Lack of necessary cofactors
. Feedback syndrome
. folate donut

 

[yellowspain]

@pamojja - overall I agree with your post, but I have never advised against "start low and go slow" with supplements. I've said several times that I titrated up - went slowly - over a couple of days to get the right dose of a potassium supplement for me. And I almost always suggest that people try low-sodium V-8 or vegetable juice first - most people from what I see can tolerate this quite well, and it can give you a good idea if the problem is low potassium or not. I suggest several glasses because if one is dealing with refeeding syndrome, I don't think one glass would be enough to alleviate symptoms and I would hate to see someone miss this because they didn't get enough potassium.

I started with 200 mg of potassium three times a day, and titrated up over a couple of days to 1000 mg a day, when my severe fatigue and associated low potassium symptoms finally abated. The RDA for potassium is around 4700 mg so my 1000 mg was roughly 25% of the RDA. I'm now taking a bit more.




Again, the dose is very important. If you just take one or 2 potassium capsules, which are always 99 mg. each (at least in the U.S.), that's a very low dose and would probably not be enough and a person might very well continue to get worse.

By taking only a small amount of potassium, my neurological symptoms have worsened considerably. Also when taking it, I felt very thirsty, which may be due to the effect of potassium on sodium.

 

[pamojja]

I think there are obvious reasons why Mary advises against 'start low and go slow' here. Dietary items are usually better tolerated, satiation alone prevents going too fast.

@pamojja - overall I agree with your post, but I have never advised against "start low and go slow" with supplements.

Sorry for the misunderstanding. I thought I differentiated the 'start low and go slow with supplements, and why that isn't at all necessary usually with dietary items.

By taking only a small amount of potassium, my neurological symptoms have worsened considerably.

Again, I would try dietary potassium, since it's available as low-sodium V-8 or tomato juice, first. One can't know if your reaction was just circumstantial, or to something else in the supplement.

Also when taking it, I felt very thirsty, which may be due to the effect of potassium on sodium.

When thirsty, drinking water together with something salty would help. Since I don't eat much salty, I supplement salt.

 

[JES]

Thanks for answering. I have followed the method of going slowly. When I test any vitamin or mineral, I open the capsule and place a small amount in my hand. I have already said that I have a serious deficiency of vitamin B9 and despite this, I started taking only half a quarter of a pill (800mcg), from there I have been increasing. I have a dilemma, because the forum talks about potassium deficiency, but this requires a restart and I have not experienced it. Now I have three possibilities before me:
. Lack of necessary cofactors
. Feedback syndrome
. folate donut

You said, however, that your blood values got back in range after supplementation in a previous post here. If you got your folate levels back in range without (from my understanding?) supplementing for a very long time or very high dosages, I would actually argue you do not have a *serious* folate deficiency.

A serious folate deficiency would typically also cause megaloblastic anemia in which the red blood cells become abnormally large. This in turn can be easily verified by doing a complete blood count test.

 

[yellowspain]

You said, however, that your blood values got back in range after supplementation in a previous post here. If you got your folate levels back in range without (from my understanding?) supplementing for a very long time or very high dosages, I would actually argue you do not have a *serious* folate deficiency.

A serious folate deficiency would typically also cause megaloblastic anemia in which the red blood cells become abnormally large. This in turn can be easily verified by doing a complete blood count test.

My levels returned to normal in just two weeks by taking a quarter of b9. The doctor said that although my blood was fine, to overcome the deficiency I had to continue taking the supplements for three months. I still haven't reached a month of taking the supplements.

 

[drmullin30]

@yellowspain - in my case sodium was also one of my refeeding needs. I'm not sure how much sodium you are taking in but if you don't eat processed foods etc. you may need extra sodium.