Hi, good morning. My name is Phillip Mehler. I'm the President and Chief Science Officer of Eating Recovery Center. I'm also a Professor of Medicine at the University of Colorado. And I'm also the Founder and Executive Medical Director of the ACUTE program at Denver Health, which is a medical stabilization unit for those, with the most extreme forms of eating disorders. Perhaps some of your loved ones started at ACUTE before they came to ERC, or perhaps thankfully they weren't that ill that they never needed ACUTE.
I'm here to review the medical complications of anorexia and bulimia and other related eating disorders. I've been in this field for over 30 years. Always on the medical side and I've devoted my life's academic work to this and published hundreds and hundreds of publications and textbooks on this subject of the medical issues. I hope this lecture will be useful to you because your loved ones will be home soon. And some of these issues may come up and it's worth being informed about them.
The learning objectives are to understand the medical issues related to eating disorders, how best to treat them and how to best to get treatment for them and understand how these medical issues might complicate the course of your loved one's eating disorder. And most importantly, to give you hope. I've been in this field a long time. I've seen many, many, many patients get better. The vast majority get better. Even those that come to ACUTE who are literally on death's door often, they also recover and are able to get their lives back and enjoy many, many years thereafter.
So this is a tough illness. It does have a lot of medical issues associated with it. But you should have hope they're in a good treatment center. ERC is clearly one of the most reputable in the country and has been doing this for many years with a high percentage of medical physicians as part of their medical staff and thus your family members are in good hands. Very quickly, why does anorexia develop? I just put this slide up to show you that there's really a genetic basis for this. There's good evidence that many of the traits that are associated with anorexia really have a heretical basis and thus nobody's done anything wrong. This is something that they happen to have the genes for and thus the illness manifests itself. And in that perspective, I think it helps patients recover because it removes some of the guilt that might be associated with this.
The reason these medical issues are important is because unfortunately anorexia nervosa continues to have the highest mortality rate of any psychiatric disorder, aside from the opioid crisis of recent. And the risk for death and anorexia is really defined by how long the illness has gone on and how serious it's been and the medical complications associated with it. In general, if the illness has only been there for a few years, the prognosis is much better. And even in those, that's been there a bit longer still the vast majority can recover. This is a study that really shows this. This is a study from the Harvard hospital system for Massachusetts General Hospital.
And it's longitudinal study that looked at patients over many years with eating disorders. And I call your attention to the third bullet where almost three quarters of the patients who had the disease for many, many years, ultimately recovered. So hope is justified. There is a recidivism rate. There's a lot of recurrences. It takes a lot of bites at the apple to finally get them over their eating disorder, but perseverance is required and likely it's going to reap good benefits for you and your loved ones if you do have that fortitude.
We'll now focus on the medical complications very briefly in anorexia and ARFID, their complications are a direct result of starvation and weight loss. And bulimia, in contrast, it depends on the mode and the frequency of purging. We in the eating disorder field talk about a number of different purging behaviors and they include self-induced vomiting, laxative abuse, water pill abuse, thyroid hormone abuse, successive exercise, to name a few. And so the complications depend on what mode of purging you use. There's a distinct group of complications for each of those respectively. And then how often you do it. If you purge once a year through vomiting, three times on the anniversary of a bad memory, you likely don't need any medical care. But if you purge 20, 30 times a day and have been doing it for months and months, that's where the complications occur.
There are many medical problems associated with eating disorders, as opposed to perhaps schizophrenia, where you can be robustly, physically healthy and never need a medical doctor with significant eating disorders. There are many medical problems that we'll go over. The good news is that most of these medical complications are reversible and treatable. There are two notable exceptions to this, where the complications can be rapid and permanent. If those taking care of you are not aware of them.
This table simply shows that every body system is unfortunately at risk for medical complications, the heart, the skin, the GI tract, the glands, the bone marrow, the nervous system, the eyes, the ears, the lung system. There is no body system that is immune from the ravages of anorexia nervosa and ARFID. The longer the disease goes on, the more the complications. The lower the BMI, the lower the percent of ideal body weight, the more the complications. And we'll go over many of these.
Similarly, with regard to bulimia, there are many body systems that are affected, but as I mentioned, just a couple of minutes ago, there it depends on how you purge. So for instance, under the category of gastrointestinal, if you purge through self-induced vomiting, you see complications related to the teeth and the glands in the face and the esophagus. If you purge through laxative abuse, then under the gastrointestinal, you see severe constipation can develop, rectal prolapse, where the rectum comes through the anal orphase and other complications related to that. But at the end of the day, regardless of whether you use self-induced vomiting or laxatives or water pills, the reason that bulimics die at twice the rate of age matched controls, please note that twice the rate, these are young people that are dying from the complications of bulimia are shown on the bottom, right, the metabolic.
People get into trouble with low potassium hypokalemia, metabolic alkalosis, which is an asset based disorder that occurs with water pill abuse, and with self-induced vomiting and the heart doesn't like the electrolytes in the body or the acid base status of the body to be abnormal, and it goes into dangerous rhythms as a result of that. So that's the thing that we really worry about with excessive purging, through vomiting or laxatives or water pill abuse. It's these chemical changes that occur in the body that we are concerned about.
This is a published study that our group here at ERC published about a year ago. Now, it's the largest medical study in the history of eating disorders. We looked at over 1300 patients and whittled it down to over 1000. And we looked at their medical complications of those patients that came into ERC. And those findings are listed in this paper and just speak to the fact that every body system is indeed affected because of these eating disorders. If you would like a copy this study, please reach out to ERC or to Bridgette. And we can get you a copy of this, so you can read it and you can share it with your team that's taking care of your loved one.
The good news in eating disorders, if there is any, is that, although there are these complications, every one of them is reversible with timely and competent medical care. Very few can cause permanent harm if they're overlooked for a excessive amount of time. But my real message to you all is that when you take your loved ones back to your communities, you should seek out competent medical providers as part of your treatment team. Very few physicians have any expertise with regard to the medical issues of eating disorders. And in fact, they can mislead you and send you for unnecessary testing and unnecessary consultations, which just derail the overall recovery process.
One note of advice would be that when you're searching for a medical provider in your community, try to look for someone that has the CEDS C-E-D-S designation after their MD. And that stands for it's an acronym that stands for Certified Eating Disorder Professional. And they are given this after a rigorous training program, including in person meetings and case studies. And then a test that I actually write for the country for the medical certification, the organization that sponsors the said certification is called IAEDP, which is again, an acronym that stands for the International Association of Eating Disorders Professionals, a very reputable organization that's been in business for many years.
And you can have a registered dietician who said certified, a psychotherapist, a psychiatrist, a medical doctor, a pediatrician, an adolescent medicine physician, a family physician, they all can get this said certification. And it's a mark of distinction that they've put in the time and the effort to become knowledgeable about the medical complications. And if you have such a person in your community, my recommendation is it's best to try to get them to be part of the multidisciplinary team that your loved one needs.
We know there's many studies showing that patients with anorexia use a lot of medical care, but they tend to avoid primary care doctors because they don't want to have a close relationship in case that person might pierce their defenses or they're hiding their illness. And so they go in and out of emergency departments and inpatient medical stays. And oftentimes the docs are too busy to ask the question what's really going on and causing your symptoms. We also know that patients with eating disorders tend to frequent the emergency department again, because they tend to often shy away from having a primary care physician relationship.
This is a study, a third bullet here from the University of Michigan, a large medical center where Dr. Susan Dooley Finch did a study looking at adolescents in their pediatric emergency room. And one out of six visits, huge number 16% of the visits were directly related to a complication from an eating disorder. So again, we need to raise the awareness of the medical community that they need to screen for eating disorders, especially in young people who come in with unusual symptoms, because these patients tend to frequent the emergency room. Question often comes up when should a patient with anorexia be hospitalized, or when should a patient with bad bulimia be hospitalized on the medical side?
Most people agree that when you are less than 70% of ideal body weight, which in general equates to a body mass index, a BMI of about 14, that you really should start your recovery process in a medical hospital in order to medically stabilize. That is what we do at ACUTE. That is all we do at ACUTE. We stabilize people with BMIs less than 14 that come from all over the world. Many of them come by air ambulance from medical hospitals, where they happen to get admitted with a complication.
And that's what we do at ACUTE. We stabilize them. We refeed them in a very measured way to get them up to a BMI of about 14. And then we step them down to traditional residential eating disorder programs in the United States, and many of our patients because of the convenience of having ERC just a few miles away from our ACUTE program end up coming to ERC. But many of them go to other reputable eating disorder programs in the United States. A heart rate, less than 40 or 50, some people say needs to be started in a medical hospital. We worry about that especially in younger people. We tolerate lower pulses in older people. In a bulimic patient that has a potassium level in their blood, less than 2.8 or some people say 2.5, that indicates severe loss of potassium, which can set the heart up for a arrhythmias. And those people should be initially treated in a medical facility to avoid some of the complications that can occur.
And then the fifth bullet there about this excessive of history of edemas which means swelling. We'll talk about that a little later, but if a patient who purges a lot through any mode of purging has a history of developing significant edema when they cease purging, that's a marker of patients that may need to start in a medical facility that has the competence to treat this edema because it can cause a lot of problems. And then the last bullet point here, this new diagnosis of atypical anorexia nervosa, the acronym AAN is a new diagnosis in DSM-5 that refers to a massive amount of weight loss in a short period of time.
We don't know exactly what that number was or should be, but certainly somebody that's lost 50 pounds over the course of three months. We are now increasingly appreciating that there may be some medical complications associated with weight restoration in those patients and we shouldn't simply applaud this massive weight loss, but we need to look at it with a bit of caution. I'm sure you're aware of this. Some of your loved ones here at ERC are in the inpatient and residential level of care. That's usually recommended when your weight is above 70% of ideal body weight up to about 85% of ideal body weight, which is approximately a BMI between about 14.5 and 17.
As mentioned just a second ago, if your weight is less than 70% of ideal body weight, or your BMI is less than 14, they need to start in a reputable center. And really ACUTE is the preeminent center in the country for this. And so if you know people in your community who are languishing in med surge hospitals with very low body weight, those are the people that really should be directed towards ACUTE so that they can get definitive informed medical stabilization. And then when your weight gets above about 85 or 90% of ideal body weight, you're a candidate for PHP, partial hospitalization, which ERC has. As you know, ERC really has the entire continuum of care, really different than any other center in the country, and this is based on the DSM-5 severity index.
Running through the body with regard to different complications and pointing out when it's bulimia or anorexia. And those that purge through self-induced vomiting, they can develop little bleeds in the eye called subconjunctival hemorrhages. They're scary looking, but they're actually not dangerous. Patients who reech when they vomit can develop epistaxis, which is the medical term for nosebleeds. Sialadenosis, I'll show you a picture that it refers to swelling of the glands on the side of the face, about three to four days after you stopped purging through vomiting, Perimyolysis, refers to erosion of the enamel on the back surface of the teeth, where the acid comes up in the vomitus and the front of the teeth are fine. And then patients who purge through self-induced vomiting can have permanent teeth erosions that are very disfiguring.
These are a picture of the teeth erosions that you see with self-induced vomiting. And this is a picture of the Sialadenosis. That is the parotid gland that sits in front of the ear. And when they stop vomiting, after a lot of vomiting, they often can really swell up these glands because of blocked saliva that's in there. And you need to treat this by giving them warm packs to the side of the face, the day they stop vomiting and have them suck on sugarless lemon drops to initiate the release of the rest of the saliva.
Moving down the gastrointestinal tract in those that purge, you can see a esophagitis gas acid reflux that old people often get, but young people that vomit a lot can get very severe acid reflux. And as a result of that, the second bullet there, they can develop Barrett's esophagus, which is a precancerous change of the esophagus, that's very dangerous, and it's a direct result of the acid coming up from the stomach. And I recommend to patients that have purged a lot through self-induced vomiting, that they should go to a gastroenterologist to have a surveillance, and endoscopy done to have a look at the esophagus to make sure that there's no Barrett changes in it because if there are, then if you suppress acid very strongly with drugs like Pepcid and Nexium, you can often reduce the risk of going on to cancer.
The third bullet there is called cathartic colon syndrome, and those that purge through the excessive use of stimulant laxative. There's some theoretical basis for saying that you're going to need more and more laxatives progressively over time in order to get the same result that your colon kind of becomes immune to the laxatives. And the fear is it can get bad enough where the colon is converted into an inert tube that's incapable of the propagation of fecal material, and these patients end up with an ostomy bag. They can't go to the bathroom normally. This is a bit controversial, but certainly laxatives are bad for you.
And then the final complication near dysgeusia refers to abnormal or lack of taste. And there's pretty good evidence that the taste receptors are abnormal in anorexia nervosa. And therefore the casserole that may have been their favorite food before can now not be tasteful to them. And rather than summarily dismissing that as, oh, that's in your head, that's your eating disorder. There may actually be a reason for that. And I actually believe that zinc, over the counter zinc may have a role to improve this. There's some evidence for that in cancer chemotherapy patients.
When patients with anorexia or ARFID are being refed, there are issues that can come up that can impede and make difficult the refeeding process.
They're shown here. The first one is something called gastroparesis, which is the term for delayed gastric emptying. So you or I, when we eat a meal, it's really emptied out the stomach into the small intestine within less than an hour in general. But diabetic patients without eating disorders and then eating disorder patients with anorexia and ARFID, there's a delay. And therefore the food may be sitting there for two or three or four or five hours, and so when they sit down to eat lunch, they feel like breakfast is still there.
And if uninformed people's responses to their complaints is, oh, it's all in your head. It's your eating disorder. They know it's not. And they lose faith in our system. This is a real issue. It's more common as the BMI gets lower and lower. And I'm a big believer in the medications that are available to treat gastroparesis. I actually don't diagnose it with a nuclear medicine emptying study, which you can do, but in the right patient population with a low BMI, I believe them. And I start them on medications and usually within a day or two there's marked improvement.
Constipation is an issue for anorexia nervosa and for ARFID even if they've never touched a laxative in their life. The whole colon, the whole GI tract slows down because it's trying to extract every last calorie out because they're not seeing many calories right now. And so these patients can be constipated and if you're constipated, you lose your appetite. So at ERC, we're very proactive with this as we are at ACUTE. And we actually start people on MiraLax twice a day, right from the start to avoid this. Early on in refeeding of patients with anorexia and with ARFID, they can develop diarrhea. It's similar to a dumping syndrome because the surface area to absorb calories is reduced with weight loss. And what you have to do is rather than giving three big meals a day, you make it into perhaps six or nine smaller meals a day and over time that will get better.
And then the last one that I wanted to speak about is something called SMA syndrome. This stands for the Superior Mesenteric Artery syndrome. And I'll show you what that is now, but it too can get in the way of refeeding patients with anorexia and ARFID. And shown here on the left is a normal anatomy where the aorta comes down in front of the spine. It's branches off the superior mesenteric artery to the left there. That's the biggest artery in the body, aside from the aorta and it gives a blood supply to the abdomen.
Normally, there's a fat pad that you see there that sits between the SMA and the aorta, and it keeps everything in place. And the reason that that's important is because passing between these two arteries is the duodenum, the first part of the small intestine, that is normal there on the left. But when you lose weight due to ARFID or anorexia shown on the right is what happens. The fat pad melts away. They don't have that fat pad because they've lost weight. Therefore, there's nothing holding everything in place and the superior mesenteric artery moves to the right. Well, the problem is, is that it catches the duodenum, which is passing between it and the aorta and it compresses it and it makes for an obstruction.
And therefore people with SMA complain of pain that occurs 15 minutes after they start eating because the food can't pass through. This is very treatable. It should not be presented to a surgeon. It does not need surgery. You can treat this simply by putting them on a soft diet or a liquid diet that will pass through, even though the duodenum is compressed and then the fat pad will come back and put everything else back into the right position and this will get better. Again, as with many complications, this is seen as the BMI falls to lower and lower. You don't see this typically with mild anorexia and it gets better on its own with a bit of weight gain, and there's no residual permanent symptoms from it.
The liver is also affected by anorexia nervosa, and it's two mechanisms. One is starvation where the liver just dies as a result of starvation. The medical term for that is autophagy's or apoptosis. And the lower the BMI, the more we see this, the lower the sugar, the more we see this. And again, it gets better with refeeding. Another less frequent cause of an elevation in the liver function blood test is something called steatohepatitis where there's fat deposition in the liver with the early phase of refeeding. And you need to change the composition of the diet, working with your dietitian to have less fat and less carbohydrates in the diet. Which one is it? Obviously, it's two different diseases and two different approaches. If it occurs right, when they come into treatment, it's likely the first one apoptosis. And if it occurs three weeks into refeeding, it's likely steatohepatitis.
An important point to be aware of is the increasing use of the term gluten sensitivity or celiac disease by patients as an excuse not to eat. This is an interesting study that was published from the Mayo clinic a couple of years ago. And it basically shows that in the last four decades, the prevalence of celiac disease in the United States has not increased, but yet the number of people that are asking for a gluten free diet has more than tripled. And so this is important to be aware of. And actually at ACUTE, and at ERC, we do not honor requests to be gluten free, unless there's blood test proof of celiac disease or a biopsy from a gastroenterologist showing this because otherwise it makes it difficult to give them foods in order to cause the weight gain that they need at this time.
Moving on to the heart with regard to anorexia and with ARFID, the heart muscle gets smaller and there's atrophy. These patients always have low blood pressure, low pulses. About a third of them have an abnormality called mitral valve prolapse, where one of the valves of the heart dropped down with each bead and cause a tugging and cause palpitations and chest pain. It's not dangerous, it's due to the weight loss. It gets better on its own. And then more recently we've discovered that there's an excessive amount of fluid in the sac around the heart, which is called a pericardial effusion. And therefore, if someone with more severe anorexia is complaining of significant shortness of breath, they should be evaluated.
As mentioned earlier, there's an increased risk of sudden death in anorexia. It has the highest mortality rate of any psychiatric disorders. It's not due to heart attacks. We know that from autopsy studies that their coronary arteries are clean and this is not surprising since they don't indulge in eating fatty foods. We then thought it had to do with an abnormality on the EKG called QT prolongation. That is a myth. Our group in Denver, both from ACUTE and from ERC have published many papers showing that, that is not inherent to anorexia nervosa.
And when you see QT prolongation on the EKG, the physicians should understand it's either because of the medications that are giving them or because of some electrolyte disorders. And more recently new mechanisms to potentially explain this worrisome increased risk of sudden death have been postulated. One is called increased QT interval dispersion, which is the diagnosis has messed off an EKG. And then a new issue called global longitudinal strain, which we are currently studying at ACUTE to hopefully be the first group that elucidates this for patients with eating disorders.
This is a nice segue into the issue of refeeding hypophosphatemia I'm not putting this up there to give you PTSD thinking back to high school chemistry, but this is important to remember because you can't casually or willy nilly, refeed a patient with significant anorexia or ARFID without marked and assiduous medical oversight. Because what happens when you give a starved patient carbohydrates as shown by the yellow arrow they that normally causes the pancreas to secrete insulin to keep the glucose normal. But one of the side effects of insulin is that it drives phosphorus from the blood into cells. And so the level of phosphorus in the blood goes down.
In addition, if you remember back to high school chemistry, an ATP, an ADP and the Krebs cycle, things that give me nausea to this day. Remember the P and all of those is phosphorus. So the body says, "Hey, we haven't seen calories in a long time. We're going to use the calories to make the energy blocks called ATP and ADP in two, three DPG." And thus there's a second insult to the storage of the phosphorus in the blood that makes it lower. And as a result of that, they develop hypophosphatemia, low blood phosphorus on the left, and therefore they cannot do intermediary metabolism anymore, and the cells die. That is called the refeeding syndrome.
If a patient starts to refeed and is not being monitored and their blood work is not being checked and their phosphorus is not being repleted based on the blood test that comes back, people can develop the deadly refeeding syndrome. This is what killed people that were fortunate to survive the Nazi concentration camps in World War II, and then were liberated by the well-intentioned Red Cross and American army. And they ate too much too quickly. And after living, after under horrific conditions for years in those concentration camps, they died within days of liberation because of the refeeding syndrome.
So this is a real risk. And that's why at the top of this talk, I mentioned that people that have BMIs less than 14, that are less than 70% of ideal body weight. They need to begin in a medical facility where they can check the phosphorus level two, three times a day and get results within 20 or 30 minutes so that the phosphorus level doesn't fall too low. You replete it and thus avoid the refeeding syndrome. This is not as big of a risk late into the recovery. So if a person was admitted to ERC with a BMI of 15.5, and now they're 18.5, 30 days later, when they go home, they're no longer at risk for this. This is early on in the refeeding process.
How do you avoid this? This should never happen. This should never happen in 2020. And unfortunately it does. Hospitals need to recognize the patient at risk, who is this? It's the homeless person who hasn't eaten in days. It's the patient with anorexia that hasn't eaten for weeks. And thus, you got to check their blood work frequently before you start to refeed them. And soon thereafter, very frequently for the first couple of weeks. We increase the calories slowly in patients with ARFID and anorexia, but much faster than when I started in this field in the 30 plus years ago.
We used to put patients on five, 600 calories a day. Now in general at ERC and even at ACUTE, we tend to start people on 14 to 1800 calories on day one. In places like Australia, they actually start patients on higher caloric amounts. So certainly we are doing it faster than before, but it needs to be measured and watched. As mentioned, you got to watch their blood work, phosphorus, potassium, magnesium. Can you predict who's going to get the refeeding syndrome or refeeding hypophosphatemia? The answer is yes. Our group in Denver wrote the first paper ever on this in the international journal of eating disorders a couple of years ago and showed that really it's all dependent on the BMI. If your BMI is very low, your chances of getting this are going to be greater. And that's why the DSM-5 severity index say that if you have a BMI of 12, you need to start in a medical facility such as ACUTE.
What are the consequences of this low phosphorus, i.e., what is the refeeding syndrome? There are five things that make it up this pentad. The red blood cells break open, that's called haemolysis. The muscle cells break open, that's called rhabdomyolysis. The brain seizes, the heart fails, and the diaphragm can't move and they can't breathe. These things are a direct result of severe critical hypophosphatemia, which could have been prevented by timely checking of it and timely repletion of the phosphorus if it's low. When does this occur? As mentioned, it occurs with all different groups, alcoholics that come in from the street to medical hospitals, they are at risk.
People that are given IV nutrition called TPN, hyperalimentation can get it. Certainly, anorexia nervosa can get it. And even this atypical anorexia nervosa, these people that lose a massive amount of weight over a short period of time, there's some evidence that they can get it as well usually within a few days of resumption of eating. The asterisk there simply calls attention to the fact that as the number of transgendered individuals continues to increase in the United States, certainly it's a big issue in the eating disorder field, where people have issues with body image. And those that are going from male to female, they are at increased risk of prolonged risk of dropping their phosphorus level because of the effects of estrogen to cause the kidneys to waste phosphorus.
Moving on to the lungs. We actually used to think for years that the lungs were immune to the ravages of anorexia. Unfortunately that's no longer true. These patients have a risk for a spontaneous pneumothorax, which simply means that the lung collapses for no good reason. They can also have emphysema changes on their pulmonary function tests even if they've never touched a cigarette because their muscles, when they swallow can be weak, they're at risk for the food going down the wrong pipe, which can cause aspiration pneumonia. And then they can have weakened respiratory muscles as a result of low phosphorus.
And then brand new again, from our group here in Denver, there's some potential possibility that there may be an association between a form of tuberculosis, which is called MAI, Mycobacterium avium-intracellulare, and in people that purge. And this is a emerging area we've known for years, that the people that get this bad lung infection tend to be tall and thin. And more recently there's some emerging evidence. It's still early that there may be a root cause here in people that purge through self-induced vomiting. And some of the vomit gets into the lungs and it sets up a fertile host for this infection. So more to come from this, but certainly just shows you again, the scope and the touch of eating disorders with regard to medical complications.
If you take 100 bulimics, this can be either anorexia nervosa, binge purge, subtype, or people that are normal weight that do purge a lot, about 90% purge through vomiting and lacks of abuse, 5% through diet pills, 5% through diarrhetics. Remember, always ask your patients what they could be abusing because now that medicines are available on the internet, medications such as Metformin, which is a diabetes drug that is associated with weight loss can be abused and cause significant complications. Patients with AFRID and anorexia are at risk for a condition called hyponatremia, which means low sodium, low salt level in the blood. This is because the kidneys can't get rid of the water and therefore you need to caution your loved one, especially after they come home, that if they're going in for their checkup and they haven't been doing well with eating, don't try to fool people by water logging before because excessive intake of water over a short period of time can result in severely low levels of the sodium level in the blood.
So people that are normal weight, it really takes 30 liters or so to be at risk for that complication, but in people with anorexia and ARFID, this can occur with just four or five liters of water taken in. So we need to caution our loved ones to not water load, to fake their weight. Low potassium. The medical term is hypokalemia. This is seen in all purging disorders, laxatives, water pills, self-Induced vomiting. The second bullet, there is an important point to get out in your communities that if your urgent care seminars and your student health centers are seeing young people with low potassium level, that's a cynic quinone of a covert presence of bulimia nervosa. There's no other good reason except for a rare medical complication where somebody's potassium is going to be low. The body does an amazing job of conserving potassium. And so if you find it, someone should ask that question, are you purging, because low potassium predisposes these bulimic patients to the cardiac arrhythmia, as we mentioned earlier, and why their mortality rate is almost twice that of age match controls.
Earlier, I also mentioned the fact that if you have a history of edema of swelling, when you stop vomiting, this could be related to an eating disorder, and this syndrome is called pseudo barter syndrome. And basically what happens is the second bullet that when you purge a lot, you're at risk for dehydration. You're losing fluids through laxatives or through vomiting or through water pills, and you're going to faint. And so the body increases the secretion of aldosterone, which is a hormone that's produced in our adrenal glands every day that keeps our blood pressure normal. But these patients have more aldosterone so that the kidneys can reabsorb more salt and water to prevent dehydration.
So now the calculus is if suddenly you decide to stop purging or your therapist convinces you to stop purging your body, so to speak, doesn't believe it. And so it continues to secrete a lot of aldosterone. You're still retaining a lot of salt and fluid, but you did actually stop purging. But now the calculus is you have a lot of reabsorption of salt and water, no purging going on, so nothing going out. And as a result of that, you have excessive fluid retention and that's what causes the edema, especially if they go to the emergency room and they receive rapid IV fluids. So again, it doesn't occur with people that purge once a week, but in people that purge multiple times a day, that abruptly stop, which we want them to do, they're at risk for this. This is only in people that purge, it's not an anorexia nervosa, restricting patients, and it needs to be dealt with proactively or else they can put on 10 or 15 pounds of edema fluid in their legs, which can become very distressing and disfiguring for the patient.
How do we do that? How do we treat this? Well, it's going to take the body a couple of weeks to believe you that you're not going to purge to reduce its secretion of aldosterone. So what do we do in the meantime? Number one, we have to treat ... we have to teach our emergency room doctors, don't push IV saltwater into these patients quickly, they're going to blow up. And then the second thing is that we here at ERC and ACUTE are big fans of a drug called spironolactone, which has been around for 40 years. It blocks the effects of aldosterone until that level goes back to normal and thus, they don't retain salt and water and they don't develop edema.
And in someone that purges a lot who gets admitted to ACUTE or ERC, we tend to proactively start this medication in order to prevent the edema and then escalate it based on the fact, if they're having exuberant weight gain. We have a protocol here at ACUTE and somewhat modified fashion here at ERC, but we use a combination of three different water pills and IV water pills in order to prevent this complication if it's very, very severe. In anorexia on the other hand, you don't develop pseudo barters edema and the reason that they can develop a little bit of edema, not a lot like you see in pseudo barters is because of the high insulin levels that occur early on in refeeding. And as a result, the kidneys also retain a little extra fluid. This is not horrible edema, this is mild. The best treatment is not medications, not water pills. It's simply to elevate the legs and it'll get better on its own within a few days.
With regard to the skin markedly affected by ARFID and anorexia, xerosis is a drying of the skin as a result of no subcutaneous tissue. These patients can have diffuse hypertrichosis. The other term for this is lanugo hair growth or downy hair. It's the development of hair growth on the side of the face and along the spine in females with anorexia and ARFID. It is not a sign of masculization. It's simply the body trying to conserve heat by putting on an extra layering of fur. Acrocyanosis refers to blue discoloration of the fingertips and the ears and nose as a result of shunting blood into the abdomen. Patients with anorexia have brittle hair, brittle nails. Biotene, the vitamin over counter vitamin Biotene may help.
And then these patients have horrible dry skin. And as a result, they itch a lot, they're [poridic 00:42:36]. And the helpful hint is, is that have them soak their hands a couple of times a day in warm water, then air dry them lightly. And while they're still moist, then put on an ointment, don't put on a cream, put on an ointment that will trap that water. We use a sore base here at ERC and quickly this problem can clear up. This is a picture of the hair growth, the lanugo hair, which melts away quickly with refeeding. The bone marrow shuts off in anorexia nervosa. All three cell lines that normally come out of the bone marrow, the white blood cells, the red blood cells and the platelets. They go way, way down.
Years ago, I did a number of bone marrow biopsies on these patients and published the results because I didn't understand and there was nothing written about why these people had blood counts that looked like a leukemic patient. But indeed it's temporary. It's due to serious fat atrophy where there's a deposition of this gelatinous substance in the bone marrow and it blocks the cells from coming out. Totally reversible just with weight gain, they don't need anything else. Patients with anorexia and ARFID to have a low temperature, low body temperature, even when they're sick, they don't spike high temperatures, so you got to be vigilant looking for infection.
And their overall risk of infection surprisingly is probably not elevated even though they're malnourished. It's a very unique form of malnutrition, but there's more studies being done in that regard. Neurologically there's cerebral atrophy, which means that the brain shrinks both the gray and white matter in the brain. These patients are not as sharp as they used to be. And if you don't catch it early enough, some of that can be permanent. That's one of the two permanent complications I was referring to before. Six months of anorexia or ARFID won't cause it, but years can. These patients have an impaired thalamic function, which is a section of the brain that controls blood pressure and temperature and taste, and therefore they have an altered sense of taste and smell. So refeeding is difficult for these patients because things don't taste and smell the way they did before. And it may take a while for that to come back.
There's evidence emerging that people with anorexia and ARFID have an increased risk of migraine, which we have noticed for years. And we, again, shouldn't just blow it off as it's all in your head, because it appears to be real. Patients with anorexia and ARFID have sarcopenia, which means low skeletal muscle mass, their muscles shrink away. And it correlates with the BMI and the percent ideal body weight, the lower that is the weaker they are, their weaknesses profound. And we do not believe in aerobic exercise for these patients when they're low body weighted. There's some evidence that a weight bearing exercises are actually deleterious to the bone as opposed to healthy people where they're good to the bone.
And therefore at ACUTE and ERC, we really emphasize resistance training, not any jogging until they're well into their recovery. And remember people that are more severe because their muscles are weak or are marked risk of falling and you have to be careful and do an assessment. With regards to the glands, osteoporosis is a big issue. You might say, osteoporosis, why are you talking about it since most of the patients are young that have anorexia and ARFID? And the answer is you're right, they are young, but bone formation really stops when you hit about 25 years old. And therefore because this is when anorexia often is occurring, it can really get in the way of the ultimate peak bone formation that you were supposed to have.
Look at the third bullet there, 50% of adolescents within a year of diagnosis of anorexia have loss of bone, mild osteopenia or severe osteoporosis in 90% of adult women. So this is a bad issue. There are many reasons in the fourth bullet for this, certainly the lower weight. Their sex steroids are low, the hypogonadal state. They have high cortisol levels, low leptin, low vitamin D. There's a lot of reasons why these young people have marked osteoporosis. But the real problem is that without definitive, rapid treatment and weight restoration, there may be a long term increase risk of fractures, the rest of their lives, and that can really impair their ability to enjoy life. They can't ski because they're at risk for falling and breaking something, and we need to be aggressive about that.
This is a paper I published a few years ago, and blue are the males and yellow are the females. And basically showing that we shouldn't forget the males. We typically think of osteoporosis as a female disease, but it's not an eating disorder. The men actually have worse loss of bone mineral density shown in the blue there. So don't overlook this and the male patients with anorexia and with ARFID. Big question is can I exercise? They tell grandma to exercise to keep her bones healthy. Why can't I exercise? As mentioned, these patients are very weak. They have this sarcopenia. We also know that weight bearing at low body weight is not good for bones. So pounding and jogging is not good when your BMI is low. So mild, intensely resistance exercises are good. And when should they allow to be go back and participate in sports and exercise is a bit controversial, but it seems that maybe when their periods come back or they get to perhaps 95% of ideal body weight, then a restrained judicious amount of exercise can be reintroduced.
Which female athletes are at risk for this? This is a controversial area, but there is a tie in between athletics and eating disorders and we have to be cognizant of it. And we can't allow patients who are shrinking away to continue to do competitive athletics. And we don't know exactly what level that should be, but certainly the question should be asked. As mentioned the glands, most of the females have low estrogen. Most of the men have low testosterone. Most of the females, 85, 90% lose their periods with anorexia and ARFID. The defect is at the level of the hypothalamus. But remember we used to tell patients with anorexia and ARFID once you have it, you'll never have a baby, that is probably false. And fertility may be impaired a little bit, but it seems to be intact. Actually the bigger risks turns out that because they're not having periods, they don't use contraception and they can get pregnant.
And then they're at more risk for a preterm infant and miscarriages and low body weight babies. And so we got to really caution our patients that if you are sexually active, even if you're amenorrhic you should use contraception. The thyroid gland hibernates in anorexia and ARFID. It's called euthyroid sick syndrome. Uninformed physicians end up putting these people on thyroid because their blood tests are abnormal, but they should not do that. Hypoglycemia, low blood sugar is a bad sign in anorexia and ARFID. Once you get that, that's a bad prognostic sign because it means that the liver is not able to keep up anymore. And those people need to be in the hospital.
If your loved one has a low blood sugar at home, don't just give them sugar tabs. They need to be taken to the emergency room and evaluated. It's also worrisome because patients with ARFID and low body weight are often don't have the typical symptoms that a diabetic would when they've given themselves too much insulin. These neuroglycopenic symptoms like sweatiness and yawning and irritability and heart rate being up. And so there's not a lot of good signs of this low sugar that can really bite these patients. So if you know your patient, your loved one has a low sugar, get them to an emergency room.
Leptin is a chemical that's secreted by the fat cells in the body. It's getting increasing attention in eating disorders. I published a paper on leptin over 20 years ago, showing that it's low in anorexia nervosa. And it turns out as they get better, their leptin levels come up. And many patients are now savvy where they're going to their physicians asking for a leptin level. And once it's normal, they say, I no longer need treatment and there's not good evidence supporting that yet. So it's worth to be aware of leptin. And ultimately I think leptin may have a role. They now are able to genetically and engineer it and it may have a rule for bringing periods back and other things. But right now, all we know is that it's low with severe anorexia. It gets better, but doesn't necessarily correlate with complete resolution of the disease.
In the last few minutes, I want to go over the treatments. Some of them that we use with anorexia for the slow gastric emptying. This gastroparesis, we use either low dose metoclopramide, the trade name for that drug is Reglan. It's been around a long time. Or azithromycin, which as you know is an antibiotic, but it also tends to empty the stomach quickly. You got to use both of these medications cautiously, but they're both effective. In general, the constipation of anorexia gets better in a few weeks of refeeding, but you should give them a MiraLAX, but don't give them high fiber because that bloats them.
The periods generally come back at 90% of ideal body weight, which is about a BMI of about 18 to 19. We don't think there's any long term infertility problems. The thyroid issue gets better on its own. The hypoglycemia gets better on its own with refeeding, but you have to watch it. When you're talking about treating bone density, which I am a big fan for, and I think that we should be aggressive with, remember that what happens is that their bones become less dense. And as a result of that, they're at risk for fractures. And so there's two terms we use based on the results of a bone density test, which is called a DEXA scan. One is osteopenia, which is mild loss of bone density on the T score. And then osteoporosis that is severe loss.
And so again, we got to be screening for this with a dexo. We believe that every anorexic or ARFID patient who have lost their periods should have a bone density done within a year of that. And then every two years thereafter, until they are resolved from their eating disorders. How do you treat the osteoporosis? This is Phil Mehler's approach. There are those that disagree with me, but in men I would use a bisphosphonate like Actonel or Fosamax. It's a once a week medication. If their testosterone is normal, if their testosterone is low, I would replete the testosterone and that will treat their bones.
Using this class of medication, these bisphosphonates in females is a bit controversial because of the risk of some fetal aberrations and malformations. And therefore I'm very cautious about using this in females, but I do use it with informed consent and a promise that they're going to use prophylaxis and let their dentists know if they're on it because it can cause some dental issues. These medications are not lifelong. They're not that you have to take them forever. They're simply a bridge until full weight restoration comes back. There are new medications on the block over the last 20 years. One is called Teriparatide where there's now evidence from a study from Harvard showing positive effect in anorexia. Also Transdermal estrogen, which are given through a patch, which is put on the skin or is effective.
Remember birth control pills BCPs are probably not effective for young people's bone disease. Prolia is a shot every six months where there's some anecdotal evidence that may be useful. But again, the real message here is to get that DEXA scan and that weight restoration is really the key to all of this. The heart with regard to anorexia and ARFID the bradycardia, the [inaudible 00:54:34] all gets better. The valve problem gets better. The ventricle goes strong again. The brain volume on CAT scan and MRI gets better, but we're not sure about the IQ, so a good reason to get better quickly. The bone marrow totally reconstitutes just with food. It doesn't need anything more. The glands in the face. We encourage you to brush after you purge lightly, and then to use a fluoride mouthwash, and then to put heat and use tart candies in order to prevent those glands from swelling up.
In the upper GI, we use medications like Nexium and Prilosec, Omeprazole for the acid reflex. You can use a high dose, I'm sorry, low dose metoclopramide, Reglan as well to improve the reflux in these patients. And remember the admonition from before to send these patients to a gastroenterologist in order to screen for Barrett's, if they've had excessive purging history. How do we weight restore people in anorexia? The dietitians here at ERC are terrific as they are at ACUTE. We've become more aggressive as previously stated. The goal is really to get them to close to 100% of ideal body weight.
As an inpatient, we try to shoot for three to four pounds a week on ACUTE and here at ERC. And as an outpatient, we reduce that to about one pound. We usually start at 14 to 1600 kilocalories and increased by three to 400, every three to four days to achieve this weight gain. There's no role for supplements really. Albumin in the blood, which is a protein that indicates malnutrition in all other diseases is not relevant in anorexia nervosa. And how is the best way to refeed them? The mode it's not clear. Is it a tube? Is it a tube in the stomach? Is it a tube in the jejunum? Is it intravenous through TPN? Is it oral? We're big fans here at ERC. If we can't use the progressive oral route, but certainly we have the expertise here at ERC to do tube through the nose, into the stomach or into the jejunum. And then at ACUTE, we also do an intravenous form of nutrition, rarely called TPN for those that just can't eat orally.
What's the best way to refeed someone? Unfortunately, we don't know. Is it enteral through a tube? Is it TPN through intravenous? Is it oral? We just don't know. There's never been a randomized control trial yet to know how to do that. We're not big fans about putting tube through the skin because they're painful. We prefer to put them down through the nose. There's challenges to it is this ethical to force to feed someone. We in Colorado believe that it is, the courts have supported us. There is a role for TPN, this intravenous. I wrote the first paper in the world using this many, many years ago in a lady with anorexia and Crohn's disease. But you have to be careful because if you don't know what you're doing, you can get into problems with the TPN.
Is there any good evidence about how to do this? Again as mentioned, we don't know the best way, but we have a very standard approach here at ERC and at ACUTE, and it's worked for years, and we don't run into problems as a result of that. I think as mentioned earlier, there may be a role for zinc to improve the taste issues as you're refeeding these patients. This is an interesting phenomenon, constitutional thinness, worth being aware of. And this simply means that in certain ethnicities, specifically of Asian descent, that they tend to be thinner than Americans do. And therefore we have to be sensitive to that when we're refeeding someone of that ethnicity, that their ideal body weight may be less goal-wise than a Caucasian patient.
You can differentiate constitutional thinness. My mother was thin, my sister's thin, my whole family's thin from anorexia. Leptin is normal in constitutional thinness. It's low in anorexia. Thyroid is normal in constitutional thinness is low in anorexia. The bone marrow scores are obviously abnormal in anorexia, they're normal in constitutional thinness. So there are ways to differentiate them. Remember that the blood test albumin, which in general indicates malnutrition when it's low, does not indicate anything in anorexia nervosa. And that's a complex mechanism why that is, but don't let someone say, "Oh, your loved one is not entitled to care because their albumin level is normal because that is not true."
What is his ideal body weight? We use the Hamwi equation to calculate this. It's 100 pounds for a female that's five feet tall, and then five pounds per inch above that. So if you're a female and you're five foot four, ideal body weight quote is 120 pounds. And then 70% of that is less than 84, and those patients at five, four should start in a medical hospital. Males are best treated based on percent ideal body weight, not BMI. BMI in males tends to overestimate their level of health. And remember in the transgender population, how you calculate this, it's unclear. We currently use biological gender to define ideal body weight.
There are many issues. I've had a wonderful career in this field, and I've been very fortunate to work in this field and do a lot of research and publish a lot, but there's still a lot that needs to be done. This is a wonderful field for young physicians and others to go into, to try to elucidate some of these questions so that we can better take care of patients with eating disorders. Just want it to end with a new concept. We've briefly spoken about it. This is atypical anorexia nervosa. It's also referred to as weight suppression. And it's simply means that even though your weight is normal, but if it came from a much higher level and you got here very quickly, you potentially are at risk for medical complications and that's called weight suppression.
And so in the past, we used to applaud any amount and speed of weight loss and now the message is it needs to be a bit more controlled. Certainly, being excessively heavy is in general, not healthy. But losing that weight too quickly can also be dangerous and needs to be done under oversight by somebody who's competent to take care of these patients. So this is newly recognized. DSM-5 does have it. It's called atypical anorexia nervosa. It's defined as the weight loss from the highest weight to the presentation weight. And these patients have a number of complications.
Angela Garber, who in my opinion, is one of the most reputable dietitians in this country from the University of California at San Francisco, came up with the maxim that says, we have to move beyond skinniest. That again, the disease anorexia, yes, it's "skinny" but you can have atypical anorexia where your weight isn't that low, but if you came there too quickly, there can be problems. And so it may affect more men. It can probably cause some instability medically, they have low heart rate, bradycardia, low pulse. They can have low phosphorus levels. They can have abnormalities in their liver. And so therefore you got to be careful. I like this quote, "It's not the destination, it's the journey." How quickly did you get there? And we need to be more thoughtful about that.
And then in the last couple of slides, just to tell you the role of ACUTE. Ao on the right is what ERC does and does well. That's inpatient, residential PHP and IOP that's for people above the 70% of ideal body weight up to 100%. And what we do at ACUTE is take care of those that are much lower than that. The lowest that we've taken care of is someone about 35% of ideal body weight who had a BMI of about 5.8 in an adult. And we're a unique medical stabilization program for those patients. So shown on the right is what we do there, shown on the far left in purple is what the average BMI is, so we obviously take care of very low weighted patients.
This is our brand new unit. I started this program almost 20 years ago. I've been taking care of these patients at Denver Health for over 30 years. And the hospital built us a brand new 30 bed unit about two years ago because we ran out of space and had our waiting list and our patients do not wait well. Each room has a locked bathroom and a 24 hour sitter in them, with them 24 hours a day to prevent them from falling and purging. We have full telemetry monitoring. It's basically like an intensive care unit. This is me speaking to a nurse, a former nurse who really couldn't walk, couldn't lift her neck off the bed. And we treated her at ACUTE and she's back being a nurse now.
We started with a staff of two people, myself and a dietician and a nurse. We now have a staff of about 190 which is made up of eight medical doctors, two psychiatrists, three psychologists, two physical therapists, two occupational therapists, which is unheard of in eating treatment programs in America. We have three social workers, five dieticians and the administrative staff. And it is the only eating disorder laid a program in the world that has a formal center of excellence designation by the insurance industry.
This paper is one you might be interested in. We're fortunate to have ERC and ACUTE in Denver where the courts have opined repeatedly and consistently that we are able to involuntarily refeed patients with severe anorexia. I certainly agree with that recommendation. The far left is Dr. Patricia Westmoreland, who is a psychiatrist that really specializes in the legal issues. On the right on top is Dr. Craig Johnson, who arguably is one of the most iconic figures in the field of eating disorders. Been in it for 40 years. Bottom left is Dr. Ken Wiener, a friend and colleague of mine for 30 years, who is the founder of ERC and has been also a real leader in this field. And that's me on the right when I was a bit younger.
And we believe that there's basis for this. I don't want you to think we have people and rather restraints being fed, the patients in the end, agree with the courts and they go ahead and ironically, or perhaps not ironically at the end when they're better, they thank you for pushing this issue and putting down a tube in order to start the weight restoration process. So the take home points in summary, anorexia and ARFID, the complications are due to weight loss and starvation. There's a lot of them. Most are reversible. There's a few that aren't. Patients that are less than 70% need to start in a place that has that expertise.
And remember a lot of docs don't have this expertise, get the word out, especially people that are languishing in medical hospitals, they're not getting the right care. You got to get them into the proper care and then be careful with this atypical anorexia nervosa. In bulimia, the complications are due to the mode and the frequency of purging. There's significant electrolyte and acid based disorders that can occur. And there's also this problem of excessive edema when you stop purging that you need to be with experts, as you begin to detoxify them from the different modes of purging that you're using.
But again, in closing, this is a curable illness. Most people will get better. I know it's a tough road. I've been in this field for now in my fourth decade. These are young people for the most part, they have great lies in front of them. We have to help them achieve that and be able to enjoy quality of life and coming to a place like Eating Recovery Center and coming to a place like ACUTE will help assure that we can achieve sustained recoveries for these patients. Don't give up.
This is a book that I wrote. I've written a number of books. I'm actually, there's going to be one more addition to it that we have published in the end of this year. It's really mostly medical, but it does have some of the other topics about ethics and other issues, and we're glad to get you a copy of that. So thanks for your attention hang with it. Thanks for your trust in ERC and in ACUTE. And we hope that soon eating disorders will be vanquished and we'll be able to prevent them, but for now we certainly need institutions like Eating Recovery Center that will provide excellent care for your loved ones to put them on the path towards recovery. Thank you.