Redefining Hard-to-Control Type 1 Diabetes
Without a standardized definition, it's difficult to determine what proportion of patients with Type 1 diabetes may have brittle diabetes, and there's a lack of newer data measuring how common it is -- or isn't. What's more, while researchers still commonly invoke the term brittle diabetes, some experts argue the term is antiquated, since advances have allowed doctors to better understand the underlying causes of unstable diabetes.
Research, including a British study published in the 1990s, indicates that fewer than 1% of Type 1 diabetes patients have brittle diabetes. Yet experts point out it's still a stubborn problem for some patients. While it's not an issue doctors who see patients with Type 1 diabetes encounter routinely, Dr. Malitha Hettiarachchi, associate program director of internal medicine at DMC Sinai-Grace Hospital in Detroit, says "it's not uncommon either."
Often unstable Type 1, or brittle diabetes, first comes to light when patients go to the hospital after developing a life-threatening complication called diabetic ketoacidosis. This typically results from prolonged, uncontrolled blood sugar: When the body doesn't have enough insulin to allow glucose to enter the cells and be used for energy, fat is then quickly broken down by the liver. The end product is a type of acid called ketones that can be used as fuel. It's normal to have ketones in the blood, and levels increase with fasting and exercise. However, for diabetics who lack sufficient insulin to keep ketone levels in check, it can become dangerous. "When ketones are produced too quickly and build up in the blood and urine, they can be toxic by making the blood acidic," the National Institutes of Medicine notes. "This condition is known as ketoacidosis."
Symptoms of diabetic ketoacidosis can include:
-- Extreme thirst or dry mouth.
-- Frequent urination.
-- Dry or flushed skin.
-- Fruity-smelling breath.
-- Muscle stiffness or aches.
-- Nausea, vomiting or stomach pain.
-- Rapid breathing.
-- Constant fatigue.
-- Difficult paying attention or confusion.
When blood sugar levels aren't normalized with insulin, it can lead to serious complications such as cardiac arrest -- when the heart stops -- or kidney failure and death.
Improving Communication Between Doctors and Patients
For concerned parents of children who have persistently unstable Type 1 diabetes and adults dealing with this problem, experts say the first step is to open the line of communication with health providers. The point, clinicians say, isn't to play the blame game, but to cut through some of the mystery surrounding Type 1 diabetes -- to better understand why it seems to be so difficult to control.
Here's what you should do:
-- Share your concerns with the doctor you see for diabetes.
-- Expect a thorough discussion and evaluation.
-- Be forthright in answering the doctor's questions.
-- Discuss any social, psychological and physical factors that may contribute.
-- Expect to receive practical advice on bringing blood sugar under control.
-- Follow up as needed until diabetes is well controlled.
Without a standardized definition, it's difficult to determine what proportion of patients with Type 1 diabetes may have brittle diabetes, and there's a lack of newer data measuring how common it is -- or isn't. What's more, while researchers still commonly invoke the term brittle diabetes, some experts argue the term is antiquated, since advances have allowed doctors to better understand the underlying causes of unstable diabetes.
Research, including a British study published in the 1990s, indicates that fewer than 1% of Type 1 diabetes patients have brittle diabetes. Yet experts point out it's still a stubborn problem for some patients. While it's not an issue doctors who see patients with Type 1 diabetes encounter routinely, Dr. Malitha Hettiarachchi, associate program director of internal medicine at DMC Sinai-Grace Hospital in Detroit, says "it's not uncommon either."
Often unstable Type 1, or brittle diabetes, first comes to light when patients go to the hospital after developing a life-threatening complication called diabetic ketoacidosis. This typically results from prolonged, uncontrolled blood sugar: When the body doesn't have enough insulin to allow glucose to enter the cells and be used for energy, fat is then quickly broken down by the liver. The end product is a type of acid called ketones that can be used as fuel. It's normal to have ketones in the blood, and levels increase with fasting and exercise. However, for diabetics who lack sufficient insulin to keep ketone levels in check, it can become dangerous. "When ketones are produced too quickly and build up in the blood and urine, they can be toxic by making the blood acidic," the National Institutes of Medicine notes. "This condition is known as ketoacidosis."
Symptoms of diabetic ketoacidosis can include:
-- Extreme thirst or dry mouth.
-- Frequent urination.
-- Dry or flushed skin.
-- Fruity-smelling breath.
-- Muscle stiffness or aches.
-- Nausea, vomiting or stomach pain.
-- Rapid breathing.
-- Constant fatigue.
-- Difficult paying attention or confusion.
When blood sugar levels aren't normalized with insulin, it can lead to serious complications such as cardiac arrest -- when the heart stops -- or kidney failure and death.
Improving Communication Between Doctors and Patients
For concerned parents of children who have persistently unstable Type 1 diabetes and adults dealing with this problem, experts say the first step is to open the line of communication with health providers. The point, clinicians say, isn't to play the blame game, but to cut through some of the mystery surrounding Type 1 diabetes -- to better understand why it seems to be so difficult to control.
Here's what you should do:
-- Share your concerns with the doctor you see for diabetes.
-- Expect a thorough discussion and evaluation.
-- Be forthright in answering the doctor's questions.
-- Discuss any social, psychological and physical factors that may contribute.
-- Expect to receive practical advice on bringing blood sugar under control.
-- Follow up as needed until diabetes is well controlled.
However doctors choose to describe more serious cases, where blood sugar swings occur frequently, clinicians roundly stress that Type 1 diabetes is controllable, even in challenging cases. In addition, experts say usually when patients have diabetes that's unstable, psychological and social factors -- which can range from mental health issues to family discord -- play a role.
"Doctors really have to understand the patient as a whole person," and not just treat the disease, stresses Dr. Bassem Dekelbab, pediatric endocrinologist at Beaumont Children's -- part of southeast Michigan-based Beaumont Health -- and an associate professor of paediatrics at Oakland University William Beaumont School of Medicine in Rochester, Michigan.
Gastroparesis and Other Physical Causes
In the vast majority of cases -- more than 90%, according to the British study -- psychosocial factors contribute to unstable diabetes. There are sometimes, however, physiologic issues that needed to be addressed. These can range from gastrointestinal problems to kidney or liver disease that affect blood sugar levels.
Most notably, some people with diabetes suffer from gastroparesis. This refers to nerve damage to the stomach that causes delayed emptying; that is, food sits for a longer period in the stomach. "So they eat food, but that food is not digested immediately and not emptied immediately," Hettiarachchi explains. That leads to a delay in glucose being absorbed by the body, causing low blood sugar initially. After a meal, a person may take insulin to help with blood sugar control. But it's only later that sugar from the food is absorbed, and that then drives blood glucose levels higher, Dekelbab adds.
So it's important to identify and treat any underlying medical problems -- like gastroparesis, which is often addressed through dietary changes and with medication. Experts note that physiologic issues aren't usually the root cause of unstable diabetes. "Most of the time we see brittle diabetes in patients who don't have those conditions," Hettiarachchi says.
"Doctors really have to understand the patient as a whole person," and not just treat the disease, stresses Dr. Bassem Dekelbab, pediatric endocrinologist at Beaumont Children's -- part of southeast Michigan-based Beaumont Health -- and an associate professor of paediatrics at Oakland University William Beaumont School of Medicine in Rochester, Michigan.
Gastroparesis and Other Physical Causes
In the vast majority of cases -- more than 90%, according to the British study -- psychosocial factors contribute to unstable diabetes. There are sometimes, however, physiologic issues that needed to be addressed. These can range from gastrointestinal problems to kidney or liver disease that affect blood sugar levels.
Most notably, some people with diabetes suffer from gastroparesis. This refers to nerve damage to the stomach that causes delayed emptying; that is, food sits for a longer period in the stomach. "So they eat food, but that food is not digested immediately and not emptied immediately," Hettiarachchi explains. That leads to a delay in glucose being absorbed by the body, causing low blood sugar initially. After a meal, a person may take insulin to help with blood sugar control. But it's only later that sugar from the food is absorbed, and that then drives blood glucose levels higher, Dekelbab adds.
So it's important to identify and treat any underlying medical problems -- like gastroparesis, which is often addressed through dietary changes and with medication. Experts note that physiologic issues aren't usually the root cause of unstable diabetes. "Most of the time we see brittle diabetes in patients who don't have those conditions," Hettiarachchi says.
Social and Psychological Causes
Managing diabetes requires ongoing support and access to care -- and having insurance doesn't necessarily shield people from high out of pocket costs. The high price of managing diabetes can make it harder for some to afford to follow doctor's orders. Many people ration insulin because they can't afford it as costs continue to rise. Not surprisingly, that can contribute to disparities in how well people with diabetes fare as well. While there's no current data on brittle diabetes prevalence in the U.S., Hettiarachchi says she'd expect to see higher rates in urban and underserved areas of the U.S.
Additionally, a range of psychological issues that may initially evade detection may also contribute to unstable diabetes. That includes mental health conditions like borderline personality disorder, which makes it harder to regulate emotions -- so that when a person feels well, they don't feel like taking medication, Hettiarachchi explains. Substance abuse, like drug or alcohol dependence, can also make it harder to manage diabetes.
In other cases, life stressors can also get in the way of properly controlling blood sugar. "So with the patients I have (whose blood sugar is) chronically out of control, I sit down and talk to them very seriously about mood issues, social issues, marital issues," says Dr. Timothy Jackson, a professor of medicine and endocrinology at West Virginia University and chief of endocrinology at WVU Medicine. Such difficulties can take attention away from properly managing diabetes, which requires constant vigilance.
Managing diabetes requires ongoing support and access to care -- and having insurance doesn't necessarily shield people from high out of pocket costs. The high price of managing diabetes can make it harder for some to afford to follow doctor's orders. Many people ration insulin because they can't afford it as costs continue to rise. Not surprisingly, that can contribute to disparities in how well people with diabetes fare as well. While there's no current data on brittle diabetes prevalence in the U.S., Hettiarachchi says she'd expect to see higher rates in urban and underserved areas of the U.S.
Additionally, a range of psychological issues that may initially evade detection may also contribute to unstable diabetes. That includes mental health conditions like borderline personality disorder, which makes it harder to regulate emotions -- so that when a person feels well, they don't feel like taking medication, Hettiarachchi explains. Substance abuse, like drug or alcohol dependence, can also make it harder to manage diabetes.
In other cases, life stressors can also get in the way of properly controlling blood sugar. "So with the patients I have (whose blood sugar is) chronically out of control, I sit down and talk to them very seriously about mood issues, social issues, marital issues," says Dr. Timothy Jackson, a professor of medicine and endocrinology at West Virginia University and chief of endocrinology at WVU Medicine. Such difficulties can take attention away from properly managing diabetes, which requires constant vigilance.
He points out that getting to the bottom of social and psychological issues that may undermine management isn't easy. But he and other clinicians say it's imperative that patients, parents of kids with Type 1 diabetes and doctors work together to do just that. "You try to get them to identify where their stressors are coming from, so that they can make some improvements," Jackson says.
Family matters also frequently factor in for kids with unstable Type 1 diabetes. Sometimes children will leverage uncontrolled diabetes in an attempt to get attention or even bring parents who are arguing together in common cause, experts say.
Dekelbab recalls a child he was seeing with Type 1 diabetes who was doing well managing it. Then suddenly he kept having low blood sugar with no clear explanation. It wasn't until later that it came to light that the boy's peers at school had been making fun of him due to his diagnosis. He eventually admitted he was hiding an insulin vial and taking it with him every day at school to drive his blood sugar down, so that his mom would pick him up, Dekelbab says.
Family matters also frequently factor in for kids with unstable Type 1 diabetes. Sometimes children will leverage uncontrolled diabetes in an attempt to get attention or even bring parents who are arguing together in common cause, experts say.
Dekelbab recalls a child he was seeing with Type 1 diabetes who was doing well managing it. Then suddenly he kept having low blood sugar with no clear explanation. It wasn't until later that it came to light that the boy's peers at school had been making fun of him due to his diagnosis. He eventually admitted he was hiding an insulin vial and taking it with him every day at school to drive his blood sugar down, so that his mom would pick him up, Dekelbab says.
Looking at the Big Picture
When it comes to understanding and managing brittle diabetes -- with its complex array of contributing factors -- experts emphasize that a holistic approach is necessary. This includes everything from seeking professional help for a mental health concern, to talking with a doctor about ways to make diabetes management more affordable.
Besides regular check-ups and diabetes education -- to ensure you're exercising and eating right -- it's important that not only patients but also their doctors appreciate how diabetes changes one's life. Chronic disease impacts body and mind. For example, chronic diseases tend to be associated with a higher risk for depression.
"With any chronic disease, there's always a big psychosocial component," Dekelbab says. "I think the problem comes when there's disconnection between the provider and the patient, where you are only really focusing on the blood sugar, the insulin -- and that's it."
When it comes to understanding and managing brittle diabetes -- with its complex array of contributing factors -- experts emphasize that a holistic approach is necessary. This includes everything from seeking professional help for a mental health concern, to talking with a doctor about ways to make diabetes management more affordable.
Besides regular check-ups and diabetes education -- to ensure you're exercising and eating right -- it's important that not only patients but also their doctors appreciate how diabetes changes one's life. Chronic disease impacts body and mind. For example, chronic diseases tend to be associated with a higher risk for depression.
"With any chronic disease, there's always a big psychosocial component," Dekelbab says. "I think the problem comes when there's disconnection between the provider and the patient, where you are only really focusing on the blood sugar, the insulin -- and that's it."
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