370: Refeeding Syndrome Explained

Chris Sandel: Hey, everyone! Welcome back to Episode 370 of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist and a coach and an eating disorder expert, and I help people to fully recover.

Before we get started with today’s episode, I just want to say that I’m currently taking on new clients. If you are living with an eating disorder – it doesn’t matter how long this has been going on; it could be a couple of years, it could be multiple decades – if you’re living with an eating disorder and you want to fully recover, then please get in contact. You can get in contact via email, info@sevenhealth.com, and you can just put ‘support’ or ‘coaching’ in the subject line, or you can get in contact via Instagram, @sevenhealthcompany, and again, in the DM put ‘support’ or ‘coaching’ and I can get the details over to you.

So, on with today’s episode. This one, I’m looking at refeeding syndrome. This is something that I think is, as a topic, pretty poorly understood. Refeeding syndrome is something that is real, it is something that is life-threatening, and people who are at risk need to know the details about it. They need to know what appropriate assessments are needed or monitoring is needed or things to look out for.

But equally, the fear of refeeding syndrome can also cause harm, and it can be used by the eating disorder or inadvertently reinforced by practitioners to justify continuing to restrict or increasing food really slowly or avoiding recovery altogether.

For example, I’ve worked with clients who’ve been made terrified of refeeding syndrome by practitioners that they were either working with or had previously worked with, and the eating disorder had latched onto this. It became like “Eating more is dangerous and we need to increase incredibly slowly, and we shouldn’t add anything in until we have the perfect support. This proves restriction is currently the safer option for me.” So the eating disorder then uses refeeding syndrome as a reason for not doing recovery.

I don’t think the answer is either of these things. It’s not that everyone should go all-in without considering any kind of risks, but I also don’t think it should be “Increasing your food is dangerous, so you need to remain cautious indefinitely.” Really, that’s what this episode is going to be about: understanding who is at risk, what monitoring may actually be needed, what the symptoms are, and how to make the safest possible decisions with the health care access that you genuinely have.

I want to acknowledge that many people don’t have access to eating disorder specialists or dietitians or regular blood tests or inpatient facilities. A lot of advice online around this can assume that everyone has this lovely multidisciplinary team, and that’s just not particularly useful and it’s not the real world that many people live in.

This episode is not going to be able to answer all of your questions, it’s not going to know exactly what is happening in your body, but hopefully it can be a bit of a point of reference so that you can understand more about what this is and when there can be some red flags to be looking out for.

00:03:14

What is refeeding syndrome?

Let’s start with what refeeding syndrome actually is. Refeeding syndrome describes the serious metabolic and clinical changes that can occur when nutrition is reintroduced following significant undernutrition.

I want to be really clear: it’s not simply feeling very full, it’s not feeling bloated, it’s not experiencing digestive discomfort, it’s not retaining some fluid, it’s not feeling tired after eating, it’s not having more anxiety because you’ve been eating more. These things that I’ve just described there, these can occur during nutritional rehabilitation, but that doesn’t mean anything in terms of refeeding syndrome. They can be happening alongside it, but just because these things are occurring, does not prove that you have refeeding syndrome.

If we’re looking at refeeding syndrome and what is happening in the body, during prolonged undernutrition, the body starts to adapt to receiving less energy. Insulin levels fall and the body becomes increasingly reliant on stored fat and protein for energy because it’s just not getting the energy it needs. In essence, it’s being catabolic; it’s breaking down the body to get the energy that it needs.

This means that although certain electrolytes can appear normal – like if we do a blood test, you could look at them and say “Okay, this is normal and this is normal and this is normal” – the body’s actual total stores may be significantly depleted. So in the blood it looks fairly normal, but in terms of the actual stores in the body, it can be pretty depleted.

So then when carbohydrates and energy intake increase, this increases insulin production, and insulin rises. The glucose then moves into the cells and electrolytes like phosphate and potassium and magnesium can also move into cells. There’s then a higher demand for thiamine, which is B1, and then sodium and fluid balances can change.

While this is going on, if the body’s reserves for different electrolytes and different nutrients are significantly depleted, the blood electrolyte levels can then fall rapidly, and when these levels fall, it can affect the heart, it can affect breathing, it can affect muscles, the nervous system, fluid balance, cognition and consciousness.

I think often when people talk about refeeding syndrome, phosphate receives real particular attention because it is essential for producing and using energy at the cellular level. But refeeding syndrome is not just about phosphate, which we will go through.

00:05:55

Why normal blood results don’t necessarily remove the risk

As I said a moment ago, why normal blood results don’t necessarily remove the risk – before you start the refeeding, the blood test can look relatively normal, but this just doesn’t tell us about the body’s adequate stores. The body works really hard to maintain the concentrations of electrolytes in the blood, even while the reserves of the body are becoming depleted.

This is one of the things that I will see often. I can have two clients who are in a fairly similar situation in terms of the amount of exercise they’re doing, in terms of the eating they’re doing, in terms of a lot of the physical symptoms, the mental/emotional symptoms they’re getting – and I can have two people get their blood tests and they look radically different. On one person’s set of tests, if you were just looking at the blood tests, everything looks pretty good. And on someone else’s set of blood tests, everything looks pretty bad. But both of these people are experiencing very similar things.

I think different people’s capacity – I often talk about the body has inherent strengths and inherent weaknesses. Some people have a real capacity for being able to keep the numbers right in their blood while this isn’t an accurate reflection of what is happening in terms of the body’s stores. And for the person who’s having these really bad blood tests, their body’s just not as good at being able to keep it in those levels. That doesn’t mean that they’re in a worse situation; it just means that their body’s capacity for keeping those blood levels in a better place is just not quite as good.

Really, where the refeeding syndrome comes in is when the food starts to come in. This is when we can see there’s a significant shift in terms of insulin levels and these changes in terms of the electrolytes. This is why it’s not just about “let’s look at someone’s blood test before they start doing this, and if everything looks fine there, everything is fine.” It is important – and I’ll go through this as I move along – it can be important to look at what’s going on before, but what is actually happening while the refeeding starts to occur.

And I just want to be clear: what I’m saying here doesn’t mean the blood tests are useless. I will often use blood tests with clients, and I think they can be helpful. But context matters, and we need to be looking at the blood tests alongside all of the other things that are going on. Because as I said, just because I can see that someone has blood tests that show markers are in a normal range, I can also look at what they’re doing and how their body’s functioning and know that even though that is occurring on the blood test, it’s not telling me what’s actually going on in terms of their body. Or at least it’s not showing me what’s going on in the stores outside of the blood.

00:08:54

Who is at risk of refeeding syndrome?

Let’s then look at who is at greater risk of refeeding syndrome, because this isn’t just that every person who goes through recovery is going to get refeeding syndrome or that everyone is equally likely to get it. It matters about certain things that can be going on. So let me just go through the relevant factors that can be contributing to this or make it more likely.

The first one: consuming little or no nutrition for more than five days alongside other risk factors, or for more than 10 consecutive days as a significant risk factor of its own. So if someone is eating very, very little or nothing for 5 to 10 days, this is going to be greatly increasing their chances of refeeding syndrome.

A long period of consuming substantially less than the body requires might also matter, even when someone’s been eating something every day. So there can be this idea of “Oh, it doesn’t really matter. I have been eating every day”, but actually what’s been coming in has been very low for what the body actually needs.

Next one is significant or rapid recent weight loss. There’s some different thresholds with this. One is more than 5% of body weight within a month or more than 10% within several months. This isn’t about where someone’s final number ends up. Rapid weight loss can create risk even when someone remains in a larger body. So it’s not just it’s only a risk factor if you get to a low BMI. If you’re losing weight rapidly, irrespective of the size of your body, it can be a risk factor.

A low weight or other evidence of substantial malnutrition. Some screening tools treat low weight as being 16 or below as a significant risk factor; others put it at anything 18.5 or below contributes to risk. But again, malnutrition isn’t just about BMI alone. If there’s been rapid weight loss, if there’s been prolonged inadequate intake, if there’s been loss of muscle and fat, if there’s nutritional deficiencies and deterioration in physical function – all of these things matter.

If someone has blood tests before this and they have low phosphate, low potassium, or low magnesium before refeeding, this obviously puts someone at greater risk.

If there’s been repeated vomiting or diarrhoea. There’s no precise number at which how frequently it has to happen to be causing a problem. But it’s a concern when it’s recurrent or prolonged enough that you’re just not retaining much of the food that you’re consuming or you’re becoming dehydrated or you’re losing significant amounts of electrolytes. When this is happening, it makes it more likely for this to occur.

And I would also say, this isn’t just this has got to be occurring as part of the eating disorder. For example, it’s not that it’s only vomiting if that’s happening as part of bulimia. Someone could have a stomach bug, someone could have lots of different reasons for why this is occurring. But if this is occurring prior to someone starting recovery, then this is increasing their risk factors.

The next one would be malabsorption. If someone has something that is creating malabsorption within the body so that you’re not able to digest food adequately, you’re not able to get in vitamins and minerals and your electrolytes as part of this. Certain issues can be coeliac disease, inflammatory bowel disease, pancreatic insufficiency or chronic pancreatitis, short bowel syndrome. If you’ve had bariatric surgery, for example, or other gastrointestinal surgery. Other conditions that can affect digestion or nutrient absorption. Just looking at things that mean that you’re not able to get in the nutrients that are then going to be really necessary when there’s this uptick of food that comes in.

And I just want to be clear: just because you’re getting bloating or just because you’re getting digestive discomfort alone, this doesn’t mean that you’re failing to absorb your food, or at least failing to absorb it to the degree that it’s then going to be creating a problem.

If there’s current alcohol dependence or heavy alcohol use, particularly when this is accompanied by low nutrition, because alcohol and the way that it is detoxified and the body handles it, it uses a lot of the electrolytes. It also uses B1 a lot, as well as the other B vitamins. So this can put you at a higher risk.

Certain medical conditions or medications. These are really illnesses or treatments that have contributed to prolonged inadequate intake or rapid weight loss or malabsorption or electrolyte loss. It could be things like cancer treatment, major surgery with prolonged inability to eat, severe morning sickness – so if you’re pregnant and there’s this severe morning sickness and that’s having an impact – bariatric surgery. If you have severe swallowing or gastrointestinal disorders. Poorly controlled diabetes. And then medications like insulin or chemotherapy or diuretics or laxatives or long-term or heavy use of antacids.

Even outside of these conditions, if someone is using or abusing laxatives or abusing diuretics, this can have an impact, especially because of how it can affect the electrolytes.

Another one would be current or recent water loading or water overconsumption. This could be if you’re consuming several litres within a short period of time or you’re regularly drinking four litres or more each day without a real clear reason to do so (so without lots of heat or prolonged exercise). Four litres in US measurements is a bit over a gallon. So if you’re consuming a bit over a gallon of water a day, this can then be having an impact just because of how it can affect sodium. It can also make things like weight and hydration and fluid changes harder to interpret.

If there’s been a pervious episode of refeeding syndrome, so if this happened before, obviously your risk of it happening again is also increased. It doesn’t mean that it’s definitely going to happen; there could’ve been factors that were going on last time that aren’t going on this time that mean that it’s different. But if it’s happened before, it’s something that’s worth noting.

In terms of exercise or movement, this isn’t a risk factor per se, but if you have high or compulsive levels of exercise, they can obviously have an impact on malnutrition. They can also have an impact on electrolytes. So recent activity levels should be considered alongside all of this, especially because of its impact on intake and weight loss and physical stability.

And I just want to be really clear with this. Obviously I’ve gone through a long list of different risk factors. Someone does not need to look visibly emaciated or come up to some stereotype that we have to be at risk for this. And I would also add, the other side of that – it’s important not to turn every history of restriction into the same level of risk. Someone eating inconsistently and inadequately is not automatically the same as someone who has, for example, consumed nothing for 5-10 days. So it’s important to understand all of the factors that are here and not just make some generalised assessments.

I also want to be clear, because I know how eating disorders can interpret things that they hear – what I’ve just listed in terms of all the different factors, you don’t have to have all of these to mean that you have an eating disorder. I know how common it is for the eating disorder to make out that you’re a fraud, that you’re not really sick enough, you don’t really have a problem.

So if your eating disorder has heard all of the different symptoms that I went through and is now saying “See? You don’t really have a problem. You don’t really have an eating disorder. You don’t really need to recover” – that is not accurate. That is not the point of this episode. These are just the symptoms that can increase it. With the clients that I work with, it’s not that every one of the clients I’m working with is experiencing all of these, is experiencing some of these. So it’s just important to not have the eating disorder then use this episode against you and start to convince you that this either isn’t a problem or “This is a real problem and we shouldn’t be doing recovery because of it.”

00:18:04

How often does refeeding syndrome occur?

So how often does refeeding syndrome occur? If you just listened to that list and you’ve noticed a number of them, you may understandably be wondering, “What is my likelihood of developing refeeding syndrome?”

It’s really hard to give you some accurate information on that. We just do not have reliable percentages on this. Lots of studies use very different definitions. Some count any meaningful fall in phosphate or potassium or magnesium; others only count where electrolyte changes lead to clinical illness or organ dysfunction. Obviously those are at very different ends of the spectrum.

In studies of severely malnourished eating disorder patients, approximately 1/4 to 1/3 developed some kind of electrolyte changes that meet at least one definition or some definitions of refeeding syndrome. But when we look at the stricter definitions requiring more severe electrolyte disturbances or fluid overload or organ dysfunction, this number comes down quite significantly. We’re looking at approximately 2% of patients who are identified as being at risk.

This does not mean that a particular person has either a 2% risk or a 33% risk; the studies involve different population levels, different feeding approaches, different levels of medical monitoring. Most of these were conducted in hospitals, where abnormalities can be identified and treated early.

I think the most even-handed conclusion is that electrolyte changes are common enough to justify appropriate monitoring in someone with significant risk factors, while severe clinical refeeding syndrome is considerably less common.

00:20:00

When are complications likely to appear?

When complications do occur, when are they most likely to appear? This is one of the most important things that I wanted to get across in this episode, because I think this can be where there is a lot of unwarranted fear and caution well after the point that it is necessary.

The most important period is typically the first several days after nutrition has substantially increased. The greatest risk is normally during the first 72 hours of increasing your intake. In most cases, they develop within the first 1 to 5 days of nutrition being restarted or substantially increased. So someone who is at meaningful risk, this monitoring can continue a little after this – maybe for 5 or 10 days, or until the electrolytes and the person’s condition are more stable.

For example, you may have someone who is very high risk; they start to be monitored and there are certain abnormalities that are being seen, and they’re going to continue to be monitored after those 10 days. Could be up to two weeks; it might be a little longer. The continuing of monitoring is while electrolytes have fallen or they remain unstable. That supplementation is being required, so monitoring how that is going. Nutrition is continuing to be increased substantially, so it’s going up in this step fashion, and we’re still wanting to monitor what’s happening because of some of these changes that have been occurring.

The person has been extremely malnourished and they’ve been medically unstable since starting to make change. There’s vomiting or dioarrhea or fluid abnormalities or other losses that continue. Or there’s new symptoms or clinical deterioration that is developing. In those situations, yes, that person is going to continue to be monitored.

But really, for most people, unless there are things that are starting to change, it is this 1-to-5-day window that is the most important.

And with this, one of the things I want to make clear – and this can be a tricky spot because I’ve seen this happen with people. As I said, it’s the 1 to 5 days that is most important. We can be really super cautious and say let’s figure this out for the first two weeks, if we’re going to think about it that way.

But we can have a situation where you may start to eat more for 2 or 3 days; then you become quite frightened, the eating disorder starts to get really loud again, so you start to restrict again. And then a week later, you start to increase your intake again for a few days. You’re moving back and forth in this cycle.

When we’re in this place, you’re not actually moving out of the likelihood of refeeding syndrome occurring. You may be, if at the point you go back to that restriction, you’re still not quite as low as before. If you have someone who was not eating very much at all; they started to eat more, then they came down a little bit, and then they started to eat more again – we are then moving along as part of this.

And I know as I’m talking about this, it’s somewhat vague because there can be different variations with this, and it depends how much the increase was and how many days that lasted for. When someone starts to pull back, are they pulling back a little bit? Are they really severely restricting again? But I just wanted to make clear that while I said that 1 to 5 days, what we’re then assuming as part of that is that the eating then continues on after that. It becomes pretty consistent in terms of the eating.

And again, when I say consistent, I know with recovery, especially in the early stages, it can be a little bit up and down. But we’re not going back to a stage where there is this severe restriction that is occurring.

What I think is most important to understand about this is that there is a point where you pass, where refeeding syndrome is not something that is going to occur. As I said, it’s the early stages of doing this. Once you’re past that, this isn’t something that we need to be focusing on. It’s not that you’re several months into recovery and because you’ve had a large dinner or you’re starting to experience extreme hunger and you’re starting to eat a lot more as part of that extreme hunger, “Now I need to worry about refeeding syndrome.” It is something that occurs in the early stages, as I talked about, because of these changes in insulin and glucose and the different electrolytes and the impact it can have within the body. And once you get past that stage, it’s not something that is going to come back – obviously unless you relapse and get back into a depleted state.

But I just want to make this clear because this is one of the things that has occurred with clients I’ve worked with in the past. They’re many months on and there’s still this fear of “But I think I’m going to get refeeding syndrome. I couldn’t possibly increase it because that could happen.” There’s this real fear that is there, and I want to just say, that doesn’t happen. Once you’re out of the woods with this, it’s not something that comes back.

00:25:46

What are the symptoms?

With that in mind, what are the symptoms that require attention? There can be lots of different symptoms. The possible signs and symptoms will depend on which electrolytes or what vitamins are affected, or whether there’s this fluid overload that’s developing. It can depend on what’s happening. Let me just go through the different symptoms.

One, new or rapidly increasing swelling, particularly in the legs or in the feet or in the face. And I just want to say that some fluid retention and swelling can occur during nutritional rehabilitation without it being refeeding syndrome. It is pretty common to experience oedema and to have this swelling occur. It becomes concerning when there are these other things that start to occur alongside it, which I’m going to go through.

There’s rapid weight increase that could also include this fluid retention. If you’re getting new or severe muscle weakness, including difficulty standing or walking; if you’re having difficulty breathing or breathlessness when lying down, or breathlessness with minimal activity; if there’s chest pain; a rapid, pounding or irregular heartbeat; if there’s fainting or near-fainting or being unable to stand safely; if there’s new confusion or disorientation or unusual drowsiness or other marked changes in mental state; abnormal eye movements or changes in vision; if there’s seizures; or a significant or rapid deterioration after nutrition is increased, so it doesn’t come up to the things I’ve just mentioned there, but things feel like they’re really deteriorating.

Those are the most common symptoms to be on the lookout for. As I said, if you’re getting fluid retention and swelling, I would be more concerned if there’s then sudden substantial, rapidly worsening breathlessness or cardiac symptoms or reduced urine output or just wider physical deterioration. Just getting the fluid retention on its own is not a sign of refeeding syndrome.

The other reason I wanted to do this as well is, I don’t want to downplay the seriousness of this, because getting severe untreated refeeding syndrome can contribute to cardiac failure. It can contribute to respiratory failure. It can lead to a coma and death. So it is something that is very serious. It’s just understanding what are the symptoms that can point to those things, or what are the risk factors that make it more likely for that to happen.

00:28:37

What kind of monitoring is appropriate?

Then if we’re looking at what appropriate monitoring can involve – and again, as I said at the top, I understand that not everyone has this wonderful multidisciplinary team and that they’re in a hospital and they’re able to get things monitored. So I’m going to just list the things that can be really useful, with the understanding that not everyone is going to have access to all of this.

One is a clear account of recent food and fluid intake, so being able to look at what has been happening prior to the recovery starting, and then what’s happening after that occurred. So we can see what is the contrast between what was happening before and what is happening now.

There can be the amount and speed of recent weight loss. What has occurred before this, if there’s been vomiting, laxative/diuretic/insulin use. So a lot of the risk factors that we’ve talked about.

It would then be looking at pulse and blood pressure and changes in blood pressure, lying down and standing up, looking at body temperature. An ECG can be useful when indicated.

Knowing someone’s glucose and phosphate and potassium and magnesium beforehand and while it’s happening in that first period.

Kidney function and other relevant blood markers that can be connected to that.

Fluid balance, swelling, and changes in physical or mental state are also important. Again, looking at some of the changes that occur or the signs and symptoms that start to occur.

Again, I want to be clear that the purpose of this is not to determine whether you deserve to eat. It’s to enable, is there a risk, and what do we need to do based on that risk?

If I’m looking for an ideal situation – and not an ideal situation where you have the whole multidisciplinary team, but an ideal situation that can help to minimise some of the risk, it would be: if you are at meaningful risk, so you have a lot of those risk factors that I talked about, to have a blood test done before or as close as possible to before you substantially increase your eating; and then having this blood test repeated during the first 72 hours when those electrolyte changes are more likely to emerge.

And then maybe continued on for the first 5 to 10 days when indicated. If we’re starting to see some signs or symptoms that could point towards something not being right, or we’re going to need to add in some things, which I’ll go through in a moment – like we might need to be bringing in some potassium or we might need to be bringing in some phosphate – continuing to monitor that until the results and clinical condition are stable.

That would be the ideal situation. And I know from working with clients that this doesn’t happen that often, that someone is getting this done. And often it’s because the risk factors aren’t warranting that to happen. But if someone can make this work when they do have those risk factors, I think that is the safest thing to be doing.

00:32:10

Is going ‘all-in’ in recovery a risky choice?

Another thing I want to address, because this can then come up connected to this, is “Should I go all-in? Is it a bad idea for me to go all-in? Does this prove that all-in is a really risky thing to be doing in recovery?”

What I would say with this is the timing matters. That’s what we would be wanting to consider with someone going all-in. I don’t think that anything I’m saying here means that someone shouldn’t do it; it just means that we need to look at the risk factors and the timing with this. So if you have high risk factors, it’s probably not best to go all-in for the first 5 days, 10 days, 14 days, whatever it may be depending on what’s occurring. But after that point, after we’re through the stage where refeeding syndrome can occur, then yes, if you’re wanting to go all-in as part of your recovery, that would be a really useful thing to do from a nutritional standpoint.

Everything I’ve said here, it doesn’t mean that everyone at risk should remain on this deliberately low inadequate intake for 5 to 10 days. That’s just not what is suggested. Once you’re past that point, we can be increasing intake as quickly and as substantially as is needed or as someone is able to do as part of recovery.

I remember in Sick Enough, Dr Gaudiani’s book – this is from the first edition; I don’t know what is recommended in the second one – but one of the things that she suggests connected to this is that for those where intake has been low, you can pretty immediately increase to approximately 1,600 calories a day, and then adding in roughly another 500 calories a day each week. So if you’re on 1,600, the second week would be 2,100; the third week would be 2,600. Doing it in that fashion.

And obviously, this is a general recommendation that she’s including in the book. I imagine when she’s working with people, it’s not just following that exactly; it will depend on the situation. But that just gives you a rough idea with this.

I also want to make really clear that 1,600 calories is the initial starting point for someone who has been at a very low amount of intake, meaning below 1,600 calories. I’m not in any way saying 1,600 calories is where you start and stop, and that that is adequate for long-term recovery. That is severely deficient for what is required as part of recovery.

00:35:13

Medications + supplements used during refeeding

Then looking at medications or supplements that are used during refeeding, there is no single medication that prevents refeeding syndrome. The management of it is usually a combination of nutrition, of monitoring, vitamin supplementation, and then targeted electrolytes depending on the abnormalities that are going on.

Some of the supplements that may be included as part of this: one is thiamine or vitamin B1. This receives particular attention because the body really requires this for carbohydrate metabolism, and the body’s need for B1 really increases when you’re starting to bring that back in. If it’s not in adequate forms and it’s starting to create a problem, it can lead to things like heart problems and serious damages to the nervous system and the brain.

Guidelines commonly recommend thiamine before or when nutrition is substantially increased followed by supplementation during the early refeeding phases. The exact dose and rate and duration is going to depend on the person’s risk, it’s going to depend on what’s been going on. There can be oral supplementation that is appropriate. In other situations, they’re getting intravenous thiamine. It will just depend on what is going on.

The next one is phosphate or phosphorus. This, again, can be necessary if blood levels are low or they’re falling. Again, depending on what’s going on, it could be done orally, it could be done intravenously.

The next one is potassium. Again, replaced if levels are low or they’re falling. If you’re not getting the right amount of potassium, it can lead to things like heart rhythm issues. It can be particularly dangerous for people with impaired kidney function. Again, something that’s important to have monitored when the risk factors are there or when the symptoms are starting to occur.

Magnesium would be the next one, and again, can be given orally, can be given intravenously. When it’s low, it can lead to weakness and tremors and muscle spasms and cardiac rhythm abnormalities. And it can also make low potassium more difficult to correct. If you’ve got low magnesium and you’ve got low potassium and you’re not correcting the magnesium, the potassium can be more difficult to correct.

Calcium is another one that can be checked and corrected when indicated.

The next are fluid and sodium and glucose management. These aren’t supplements, but they can be part of the treatment. You can be monitoring your fluid intake, your urine output, your swelling, your sweating, your sodium and blood glucose. Again, insulin or intravenous fluids may occasionally require adjustment, so this is one of those things that is going to be monitored and then given based on that.

One of the questions could be, “Would an ordinary multivitamin or multi-mineral be helpful?” For most people who can safely take one, I would say a standard multivitamin and mineral used according to the label can be a reasonable source of general micronutrients and support during this phase.

But I don’t want to create this false reassurance. Often, the quantities that are in these supplements, particularly thiamine or magnesium or potassium, is a lot smaller and a lot lower, so it may not be enough to correct a deficiency. And a lot of supplements don’t have phosphate in them at all. But at the same time, I don’t want to have people mega-dosing just in case, because that’s not particularly necessary, or it could be creating more problems, especially if something is low, something else is fine, but because of how these different electrolytes can interact with one another. So on your own, I wouldn’t be suggesting high-dosing all of these things as a precaution.

00:39:59

Removing unnecessary fear around refeeding syndrome

As I said at the top, I think there can be this unnecessary fear that gets created around this. I just want to say that while it is serious, I don’t want to be adding to that, because I think what happens when that becomes the case is the eating disorder latches onto this as a reason. There’s enough fear that is going on already with every one of the changes that is required and occurs in recovery that I don’t want to add another layer to this.

What can often happen is that it can lead to treating an increase in food as being dangerous, or using body weight as the only assessment risk, or providing these vague warnings, but without really giving you something to know – is this actually helping? Are we getting through this phase?

I think this has often been the problem I’ve seen in the past with clients; they get really strongly warned about this, but then they’re two months in, three months in, and this is still something that they’re worried about occurring because there hasn’t been the plan in place to say “We’re going to do these things, and if this hasn’t occurred by two weeks, we’re good” or “If this has occurred, this is the monitoring we need to do and this is what we need to get looked at immediately.” It’s just this vague warning of “Do you know that refeeding syndrome can be life-threatening and we don’t want that to occur” and then not really having a gameplan around it.

This can then lead to increasing intake by these extremely small amounts, and the problem with doing that is we need a certain level of increase to start to see what happens when we’re bringing in more food. What is going to happen in terms of insulin and what is going to happen in terms of the electrolytes? I think what can often be recommended is “Let’s go really, really slowly. We’re going to do 50 extra calories a week and we’re going to slowly work our way up so that we’re removing all risk of refeeding syndrome.”

And while I understand in theory that that may remove someone’s risk of it happening, what invariably happens is recovery doesn’t happen, because it’s in such small amounts that you’re having all this added anxiety for making these changes, but you’re not really getting any upside for doing it. So invariably, after two weeks or three weeks or a month or even six weeks of doing this, (1) you’re not outside of the window of refeeding syndrome occurring once you do properly increase your eating, but (2) you’ve then had six weeks of torture, of making these very small changes, and it’s likely that someone just goes back to what they were doing before.

It’s trying to remove the risk, but what you’re then missing out on is you’re not removing the risk of someone staying in an eating disorder. Which is also life-threatening. There are ways of doing this safely that don’t involve making very, very, very tiny increases.

There can also be worries about interpreting normal changes as being unsafe. So someone getting very normal digestive discomfort, which is very common as part of recovery, or getting very normal water retention, and saying “This is unsafe. We need to pull back, we need to slow down.” Again, just feeding into the fears and giving the eating disorder leverage with this.

When that happens, the eating disorder is like “Even the professional thinks I shouldn’t eat so much.” It doesn’t even have to be “shouldn’t eat so much for refeeding syndrome.” It could just be like “They don’t think I should eat so much. My body can’t cope with food. Feeling uncomfortable means that I’ve increased things too quickly. The safest option is to just keep restricting.”

That’s definitely not what I want to be happening. Someone who is competent when working with this should be able to explain why they believe that you are at risk, what specific factors are concerning, what monitoring is required, what would lead them to change the plan, how nutrition will continue to increase.

When I’ve worked on this with clients where they do have a lot of risk factors, it is me mapping it out in that way: “This is what we’re going to do over this next handful of weeks to make sure that we’re reducing the risk as much as possible. And I want you to let me know if any of these things are occurring” – and being specific, going through the things that I’ve gone through as part of this episode, those are the warning signs to be looking out for.

It’s not just “Any time you’re getting any uncomfortable sensation in your recovery at this stage, I want you to let me know.” It’s “These are the specific things that can point towards refeeding syndrome” so that in as quick a time as possible, we can not be needing to talk about this again because over these two weeks, we’ve got to a stage where this is just not a problem and we can move on to other things.

00:45:29

What if you don’t have access to medical supervision?

I want to talk then about, what if you don’t have access to medical supervision? As I’ve acknowledged a number of times, this is the reality for many people. For a lot of people in recovery, they don’t have an eating disorder informed doctor. They may have someone who’s dismissing them because of their body size. There can be cost or location or waiting list or health care systems that are not providing the monitoring that is required.

I don’t want to say only do recovery if you’ve got a specialized team with this real ideal care, because that could mean that the vast majority of people with eating disorders stay living with their eating disorders, and that is also not a very healthy, safe thing to be doing.

Really, the aim here is reducing the risk. It’s harm reduction, and not harm reduction in terms of the way people talk about doing harm reduction in recovery; I’m talking about doing harm reduction specifically for refeeding syndrome. Getting access to the best available safety net that you can, and doing whatever is available for you.

And also not pretending that this limited support you’re getting is equivalent to specialist care, and being able to be realistic about, “What is the care that I’m getting? Okay, I need to take this into consideration.”

The first thing I would say – there’s three things I want to mention. The first is: establish whether urgent assessment is needed. I’ve gone through all the different risk factors. If you’re going through and you’re looking and like, “Man, I’ve got a lot of those risk factors”, it’s going to make it more important for you to be seeking either medical assessment beforehand or as close as possible before increasing nutrition. That might not be possible for you, but if it is possible in any way, that would be my suggestion.

Once you’ve then started to make changes, then seek urgent medical help if you’re getting chest pain or difficulty breathing or fainting or confusion or seizures or severe or rapidly worsening weakness, a new or irregular heartbeat, new or substantial swelling, inability to keep down foods or fluids, any marked deterioration like this after increasing food. If any of those things happen, then seeking medical help. If you’re in the UK, GP urgently, NHS, 111, going to A&E.

Wherever you are in the world, having that kind of thing. If you need to go to emergency services, go to emergency services because these things are happening. It could be useful to know and do some research before starting of “These are the numbers, these are the places I can go if that does occur.”

Number two is: use whatever medical access exists. The doctor that you’re seeing doesn’t need to be an eating disorder specialist to perform a basic physical assessment and to order relevant blood tests. You could state to them clearly about what is going on and what you’re about to embark on. As an example: “I’ve had a period of significant restriction or rapid weight loss and I’m increasing my food intake. I’m concerned about refeeding syndrome. Can you assess my physical stability and check my phosphate, potassium, magnesium, and glucose, as well as advising whether repeat monitoring is needed?” Asking this of whatever medical access that you have.

By doing that, you can get a bit of a sense of how much capacity they have to continue to help you with this. You may discover that this person takes this very seriously; you may unfortunately discover that they don’t take it very seriously. But by having that conversation, at minimum I would hope that you would be able to get those blood tests to be able to look at. Because this means that even if they’re saying “We don’t need to do any follow-up”, if you’ve had that in advance and then things start to go awry and you end up in emergency services, then when they’re doing the new blood test, you’ve got a point of comparison of what was happening beforehand and is happening afterwards.

So that would be my suggestion with this. And being really honest when you’re going and seeing them. Describing your intake and describing your behaviours honestly. Minimising any of these things – minimising the restriction or the weight loss or whatever it may be – is not going to be helping you. And again, I know that depending on the size of body someone’s in, the eating disorder behaviours could be encouraged, because they’re saying “Well, it’s wonderful that you’ve lost weight” or “It’s so wonderful that you’re doing this much exercise. I wish more people could be doing it.”

I’m not saying that you’re guaranteed to then get good care because of this, but I think it’s important to be honest about what has actually gone on so that you’re increasing the likelihood that you could get someone who does know this stuff and does care, and that would be more helpful with them having the full picture of what has been occurring.

If possible, I would also be involving another person about what is happening – a family member, a partner, a friend, a therapist, a recovery coach, whoever it is. Their role is not to be a substitute for a doctor, but it’s to help notice if there is deterioration. It’s to help support with regular eating or to assist you with seeking care.

And again, it might not be that someone’s able to help you in the entirety of your recovery journey, but especially if you’re high risk for this five-day period, for this two-week period, to be able to say “I just need to be able to be in more regular contact with you over this period” or “I need you to be able to check in on me more over this period.” I think that can be really important, especially when you’re not having this whole multidisciplinary team looking after you.

Then the third piece is just avoiding the two very dangerous extremes: one extreme is ignoring the possibility of refeeding syndrome and just assuming everything will be fine and whatever symptoms are going on, they’re just part of recovery and everyone gets these symptoms in recovery; or two, remaining significantly undernourished indefinitely, waiting either for the perfect support or waiting for the perfect team who’s going to be able to monitor everything, or doing it in this very, very slow way as a way of trying to avoid it. Neither of those two extremes are helpful as part of recovery.

So that is it for the episode. I wanted to go through everything that’s important as part of refeeding syndrome because, as I said at the top, it is this thing that is so poorly understood, and because it’s not a reason to avoid nourishment. It’s not a reason to avoid doing recovery.

It’s important to understand your risk and it’s important to understand what is most helpful as you go through this process, but it shouldn’t be a block to you during recovery. Some people do need urgent and intensive medical support, either before starting this or because it’s occurred as part of recovery, and other people – and I would say the vast majority of people – this is not something that is going to occur as part of recovery. So it’s important to know the risks, but to know the risks and the likelihood that that is going to occur without the eating disorder then hijacking that and getting in the way of you doing recovery.

So, that is it for this week’s episode of the show. As I mentioned at the top, I’m currently taking on new clients. If you’re wanting help in your recovery, if you’re about to embark on this and wanting support because you’re concerned about refeeding syndrome, this is something that I work on with clients. You can send an email to info@seven-health.com or you can send a message on Instagram. It’s @sevenhealthcompany. Put ‘support’ or ‘coaching’ in the subject line and I can get the details over to you.

That’s it for this week’s episode. I will catch you again next week. Until then, take care, and I will see you soon!

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