In this podcast Tabitha talks to the wonderful Dr Gaudiani about the important and often misunderstood topic of edema.
In this podcast we cover:
- pitting edema
- dangers of long-term edema
- triggering aspects of edema
- edema and purging
- medications for edema if long-term
- edema in the abcess of purging
- the importance of specialised advice
The Eating Disorder Recovery Podcast
Tabitha: Hello there and welcome to this weeks podcast. This week I’m talking with Doctor Gaudiani again. I’m excited about this one, edema. That’s what we are talking about. It’s one of those recovery bogeys. Many people dread it, many people experience it. Lots and lots of people do not understand it. So we are going to get into the nitty gritty on edema.
Here’s Doctor Gaudiani:
Dr G: So let’s start with the kind of edema that happens when patients stop purging. This kind edema is really tough. I mean, is there a kind of edema that’s not tough for someone who has an eating disorder? We know that first of all, edema means retention of salt and water in the body tissues. Edema can show up physically as swollen toes, swollen feet, swollen ankles. In a way that’s a little triggering, maybe uncomfortable to walk on. As it gets worse it can worsen to the point where it’s called pitting edema when if somebody pushes their thumb gently into the side of their leg for 10 seconds and releases it, it leaves a pit where the fluid has been pushed out transiently. That’s pitting edema.
Edema can progress to the point where it fills the space in the abdomen around the organs and that kind of fluid is called ascites. It can progress to the point where fluid fills the lungs and that can be called Pulmonary Edema. It can get to the point where it fills peoples brains and they can get a terrible headache and feel really fuzzy or actually get in danger with medical problems from it.
So there are lots of different types of edema. Before I go into what type is what. Let’s just focus a little bit on the physical exam side of things. For instance, patients who wear rings might find that they don’t fit when they’ve got edema. Again those who are acutely body aware may really misinterpret what’s going on with their bodies when things suddenly look different, they feel different and clothing fits differently.
Edema typically comes and goes. It does not mean suddenly my body got bigger and stayed bigger. That’s not usually edema that’s usually body weight. Edema will typically worsen in the feet by the end of the day, because we are a column of water against gravity and by the end of the day being on our feet, water has drained down and gotten into our legs and ankles. Usually by morning once you’ve been lying flat, that’s had a chance to get back into the vasculature to a certain extent and get urinated away. So the key exam feature for edema is that it comes and goes.
Every person gets edema in different places. Some really get it in their faces and we have to remember the facial tissues are very delicate so if there’s any propensity to have extra salt and water, it’s really easy to have it go into the face. Everybody’s experience is different, it’s genetic whatever your body does with edema is what your body does.
Lets consider rebound edema for people who’ve stopped purging. We are going to go back to my favourite concept, the cave person brain. We know the cave person brain is that part of our brain that runs us as a mammal. Unaware of our reasons for doing things it just knows what’s happening to it’s animal. When somebody purges and everybody’s different to how their body will respond to that and of course as ever, this applies to people of all shapes and sizes, the cave person brain typically interprets, I must be dying of dehydration in the desert. I am dehydrated all the time!
So it says to itself, if we are so lucky as to come upon an oasis where there is availability of salt and water, we better make sure that we don’t pee away those life saving resources, we need them. In fact, looks like we may even need to store a little extra fluid for when we go back into the desert. So in the genius of our bodies, the adrenal glands, which sit like little caps on top of the kidneys, over produce a hormone called aldosterone. And aldosterone does a couple of things in this setting, 1) it makes you retain every drop of salt and water that you take in. That can be by mouth or by intravenous fluid if you go to the emergency room. 2) By accident, this is not one of these things that has a purpose, it dumps potassium in the urine. And what do patients who purge need less than to lose the precious potassium they’ve got in their urine? This explains why people who purge and are still purging and are still dehydrated, even if they are taking potassium tablets, their potassium still may not come up because the high aldosterone levels is making it be wasted in the urine.
What happens clinically to patients who purge and then stop purging? Whether it’s by vomiting, diuretics or laxatives typically. Is that if they get brave enough to decrease their purging or stop it, if they are unfortunate enough that their eating disorder makes them weigh themselves often, as a side note, no one ever needs to weigh themselves ever again, including in the doctors office. Then they will literally potentially notice their weight increases 5-15lbs within a few days of stopping purging. And they think to themselves, the eating disorder voice says, I told you. This is a disaster. Look what you’ve done to yourself, we knew it wasn’t safe to stop purging. Typically they don’t have a loving practitioner around them, although sometimes they do, to say wait a second, stop, this can only be fluid weight, this can not be body weight. Take a second. And for those who purge, fluid weight can be just as scary as body weight. So it’s not necessarily that reassuring anyway.
The good news is there is a wonderful way to fix this, or at least really reduce the symptoms, the distress and even the medical dangers. There are three main steps. 1) A person has really got to stop purging, easier said than done. Because every time they purge, they are going to keep giving their cave person’s brain the message to overproduce aldosterone, we are still in the desert. 2) They’ve got to be a little gentle with their fluid intake for a while. And by gentle I mean, let’s imagine that you have a bath tub, whose plug for some reason isn’t working that well so the water is having trouble draining. Much in the same way that the high aldosterone levels prevent normal fluid intake from draining out the through the kidneys and the urine. What you don’t do in that situation is turn both taps on full speed because then you’re going to have the bath water flowing everywhere.
There is a mistaken impression that one needs to detox their system or flush their system with lots and lots of water all the time. Hydration is great but particularly if you have a plumbing problem, hormonally speaking, you don’t want to be drinking tons and tons of water because it’s just going to put your body under strain and you’re likely to be getting edema. So I typically tell my patients 2-3 litres a day, that’s 60 to 90s ounces a day. Usually that satisfies thirst and it doesn’t overload the body with fluids, that’s the second step.
3) A doctor has to prescribe a medicine to block the aldosterone. The medicine is easy it’s called Spironolactone. Spironolactone is an old diuretic and some of my patients go, a diuretic, Dr G, what are you thinking?! But Spironolactone is not one of those kind of diuretics, its not that strong. What it does is directly blocks aldosterone, that’s it’s mechanism of action.
So when a patient of mine who has been purging by vomiting or diuretics is ready to stop purging. I’ll typically put them on about 25mg of Spironolactone which is the lowest dose for about 3 weeks. And if they’ve stopped purging and are nourishing themselves and hydrating appropriately, within that 3 weeks the adrenal glands finally get the message from the cave person brain, it looks like we are out of the desert permanently stand down. Stop producing so much. In the meantime my experience is that patients go, it’s possible to stop purging and not get super edemonous. How exciting, so it it’s a really satisfying intervention to something that gives so much distress to patients.
Patients who use laxatives is a bit trickier a matter. People who use laxative to the point of diarrhoea are typically more dehydrated than those who purge by vomiting in my clinical experience. That means a couple of things, 1) The weight that they unfortunately stepped on the scales that morning and got, while they are still using laxatives, is quite a lot lower than their true body weight because of how profoundly dehydrated they are. The reason I think the dehydration is worse is because the colon really has a huge surface are to pull body water out and to be lost in diarrhoea, how much water can you really lose throwing up? But you can lose a lot of water through diarrhoea.
Secondly, just because of some really nerdy acid based calibrations in those who purge by laxative abuse, Spironolactone doesn’t work as well. My experience is patients who stop laxative use just by the very process of stopping being their raisin form, the dried fruit form, they’ve got no hydration at all. Their body weight should rise appropriately by a certain amount, everyone is different. That’s not something I’d seek to prevent, just like its not something I’d seek to prevent for people who purge by any other means because rehydration is appropriate and necessary. Maybe distressing, that’s why people have wonderful coaches or therapists but it’s appropriate.
What I want to do with the Spironolactone in the cases of those who purge through vomiting or diuretics is avoid edema formation. With those who purge by laxatives is virtually everyone will get some edema, even if they do everything right and I do everything right. In that case, we just say, hold my hand honey, I’ll stay with you through to the end. I’ll be there to bear witness, I’ll be with you, I can hold your distress. It’s going to eventually go away. But I often use a higher dose of Spironolactone, perhaps 100mg a day and for long period of time maybe tapering it off. That tends to be what works in my experience, there’s not a lot of literature out there on that. But even so there is going to be some stuff and it’s going to be hard so having a great team is helpful.
So that’s the basic refeeding edema story. Typically the patients who don’t use laxatives who on their blood panel have what’s called a CO2, sometimes it’s called the Bicarbonate, of over 30 or 24 is normal. Those are the ones who can expect to get swelling when they stop purging because that’s a marker of a degree of dehydration. And so it’s those patients who will really benefit from Spironolactone in particular.
Any questions pop into your mind?
T: No, you’re so fantastic at explaining it really. I think that the edema after purging is more commonly spoken about so I guess the big question which I’m pretty sure you’re going to go on to anyway, is what about somebody in the absence of purging who experiences edema.
Dr G: What a fantastic set up. Yes the other kind of edema is what I’m going to broadly call refeeding edema. Now the medical literature is encouraging practitioners to move towards the phrase nutritional rehabilitation because refeeding is considered understandably deterministic or parentalistic. But I’m going to call it refeeding edema because it’s an easier thing to say and it’s familiar to people.
When someone has been restricting calories, of any body shape or size, And they begin to take in nourishment again. In some people, the response of the body to getting more nourishment is for the insulin to say Yippee! We’ve got some nutrition, let’s push it right into the starving cells. And so as people digest their food, some overproduce insulin compared to what they might truly need which is probably genetic and it pushes the glucose and the nutrition right into the cells, just like it’s supposed to.
Insulin has a tricky little side effect though, it causes the kidneys to retain salt and water. Now only about half of patients with critical malnutrition and low body weight as per my previous hospital program actually develop refeeding edema. Not everybody does and we can’t tell for sure, who’s going to develop edema and who won’t. One feature that we know does predict edema is a low albumin level in the blood. Albumin is one of our blood proteins that acts like a vacuum to vacuum out of the tissues any extra fluid that doesn’t belong there and bring it back to the blood stream for the kidneys to produce and eliminate as urine.
If someone has a low albumin level, it’s easier for the water part of the blood to ooze out of the vessels into the tissues as edema and so things that can cause low albumin levels include when it comes to eating disorders, having another medical condition that’s inflammatory it could be cancer, rheumatological disease, auto immune disease, infections do it. Some of our older patients seem to have lower albumin levels. But that’s a predisposing factor.
So anytime one of my patients is going to begin nutritional rehabilitation and happens to have a lower albumin level. I try to set expectations, say I’m pretty sure you’re going to get edema in this process, it’s going to suck and I’m going to give you as many tricks of the trade to get through it but there is no way to prevent this kind of edema. Spironolactone does not work for refeeding edema. There are other patients who may just have a predisposition to produce lots of insulin anyway. When they nourish themselves, their body produces lots of insulin and they get that effect of lots and lots of edema. So there are a few things to say about it. Best management in people of all shapes and sizes, is to encourage them to keep their feet up while they are seating and to stay seated a bit more often than usual because just keeping that edema out of the delicate tissues of the ankles, feet and toes, where it’s really quite painful can help. Edema is really less painful if it’s sitting in your upper legs because there is more room.
In some individuals for who they fit and are comfortable, compression stockings can help. Those are the very fashionable leggings that people usually wear up to the knee, rarely up to the hip that you put on in the morning and you take off at night so when you walk in them, they just give a little extra support to your legs so that the fluid literally doesn’t have the space to fall out of the vasculature and into the tissues.
The only people in whom I’d consider using a more hefty diuretic like Furosemide which is a loop diuretic, would be those in whom the edema is so severe that they are about to break down their skin. Because if you fill a water balloon really fast without giving it a chance to expand, it can pop and that can happen with skin as well. So I try to use Furosemide just for a few days, just to ease back the edema a little bit.
But unfortunately this one just has to be gotten through and it’s support, it’s expectations and sometimes and I want to be very careful here, their dietitian can back off their carb fraction of their diet, by mean meal plan and by meal plan I mean the food they are consuming, just a little bit, maybe back to 40% where maybe 50% would be typical.
The reason for that is not because there is anything wrong with carbs. Carbs are fabulous, I eat carbs, I love them, everyone needs them our brains need carbs, our muscles need carbs, yay carbs. But since it is an insulin effect, you can decrease the insulin response a little bit just by backing off a little bit on that carb fraction just until that edema is better.
This is a really important point, there are certain online circles that encourage patients to eat a truly painfully high number of calories and they claim that edema is healing. This is unscientific, misleading and harmful. Edema is not healing, edema is a side effect of insulin production during nutritional rehabilitation. When nutritional rehabilitation is being done properly, with the very rare exception of somebody who has an extremely low albumin level, refeeding edema should go away within 3 weeks. But patients who have perhaps been harmed by various online resources that claim otherwise, I want to empower them compassionately to know that the notion of edema as healing is a myth.
T: Why do you think that that notion has come about? Where would that of come from? Why would somebody have thought that do you think?
Dr G: I’m no mental health professional but if I was a guessing girl, I would think that a recovery system that universally prescribes extremely high calories to people in perpetuity and which causes people to increase their insulin production very high, for a very sustained period of time causing sustained edema would probably have a secondary gain by claiming that that’s healing because it’s such a common side effect of that practise. There is no eating disorder dietitian in the country who would prescribe such a meal plan unmonitored, unobserved. It’s just important to emphasise that point.
T: Yes I think it’s also important to emphasise the point that nobody other than registered dietitian who you are seeing should be prescribing a meal plan.
Dr G: Yes, I think that that’s so well said. What I recommend for individuals who might have in the past, or might be in the process of following such advice and finding that they have severe edema in a really prolonged fashion, is to, if possible, if the resources are there and I speak from a point of privilege on this, try to find eating disorder professionals specifically who really know what they are talking about. Who might be able to do telemedicine if it’s a geographic problem, who might be able to offer services at a reduced cost if that’s available.
But broadly speaking, once again Health At Every Size philosophy comes to our rescue. Ultimately when somebody is nourishing themselves without restriction and adequately for their energy needs, and when they are moving for joy within their ability and their interest level, when they are attending to their mental health and we put that into the context of the really complicated social justice structures that are around all of these ideas, their body will do what their body needs to do.
T: Huge thank you to Doctor Gaudiani for taking the time to talk to me. I think we covered a lot in that, well she covered a lot, I just listened. I have listened over and over again because that’s such fantastic information and I think many of you are going to find that really helpful as well and I hope it settles some worries for you if you are going through anything that we talked about in the podcast today and remember, if you’re in doubt the best thing to do is to find an eating disorder professional, medical advisor, registered dietitians can be really really helpful as well in this type of field. Anything that’s sort of nutrition related and stuff going on with your body that is as a result of recovery nutrition. So always, rather than consulting online stuff and asking random people on the internet, what you should do is find a medical doctor to go and talk to.
Your body is different from my body is different from the next person’s body is different from whomever your registered dietitians last patient’s body. All these bodies are different and yes there are trends that we follow and eating without restriction is something that I think for all bodies is important but these are all general concepts and then there are specifics to how your body processes things, what your body needs to do, what your body goes through and you can’t learn that from a general online anything. It’s specific to you, it really is. Thank you for listening, I will link in the show notes to any information from Doctor Gaudiani, so I will just link to her website and there are cool videos on there actually. She does these one minute medical minutes and she just picks a topic and talks about it really short and sharp for a minute and a minute is not long enough for even my attention span to run out. So I’ll link to all of those sorts of things in the podcast. Thank you for listening. Cheers and until next time cheerio.
The Gaudiani Clinic provides superb expert outpatient medical care to adolescents and adults of all sizes, shapes, and genders with eating disorders or disordered eating. The Gaudiani Clinic also offers comprehensive person-centered care to those who are recovered from an eating disorder. Through a collaborative, communicative, multi-disciplinary approach, the Clinic cares for the whole person, in the context of their values.
Under the care of Jennifer L. Gaudiani, MD, CEDS, FAED, patients receive expert medical care provided in a comfortable and highly discreet private practice setting. Dr. Gaudiani is one of the only outpatient internists in the United States who carries the Certified Eating Disorder Specialist designation and is internationally recognized as an expert in the eating disorder field. In her role as an expert outpatient medical doctor, Dr. Gaudiani can function as a patient’s primary care physician or as an expert adjunctive physician as part of a multidisciplinary team.
The Gaudiani Clinic is located in Denver, Colorado with both local and telemedicine treatment plans available.
Dr. Gaudiani also offers professional services including private and group consultation, professional webinars, and presentations.