Do you experience large blood glucose (sugar) swings with type 1 or type 2 diabetes? You may have brittle diabetes, which is diabetes that’s hard to manage. Your doctor might also call this “unstable diabetes” or “labile diabetes.” Living with brittle diabetes can interfere with your day-to-day life and lead to health complications if left untreated.

In this article, we’ll discuss what brittle diabetes is and who’s at risk of developing it. We’ll also cover how doctors diagnose this disease and available treatment options. To learn more about brittle diabetes, talk to your health care provider or an endocrinologist (hormone specialist).

What Is Brittle Diabetes?

People living with brittle diabetes have severe high and low blood sugar swings. These swings can be so frequent and severe that a person may need medical care in a hospital to recover. Most people with diabetes can experience some blood sugar swings, but they’re usually not as severe.

Your body works hard to keep your blood sugar levels in a healthy range — between 70 milligrams per deciliter (mg/dL) and 99 mg/dL. When your levels rise or fall outside of the normal range, it can quickly become dangerous.

Doctors don’t use the term “brittle diabetes” as an official diagnosis but rather, mostly, as a way to talk about diabetes that’s hard to treat properly. Your health care provider can help explain why you might have brittle diabetes.

What Is Hyperglycemia?

Hyperglycemia means “high blood sugar levels.” You have hyperglycemia when your fasting blood sugar level rises above 125 mg/dL or when the post-meal blood sugar level (two hours after a meal) is 180 mg/dL or higher. People develop high blood sugar when they don’t make enough insulin. This hormone acts like a key that helps glucose enter your cells. Your cells then use this sugar for energy.

When you don’t have enough insulin — or your cells don’t know how to use it — blood sugar builds up in your bloodstream and leads to hyperglycemia. Those with undiagnosed type 1 diabetes can have blood glucose levels over 250 mg/dL at diagnosis. Left untreated, those levels can rise above 500 mg/dL.

For a person living with diabetes, blood sugar levels indicating hyperglycemia can vary according to their target blood sugar level goal. Always check your blood sugar levels regularly and work with your health care team to keep your levels at or below your target. Hyperglycemia, if not treated for a long time, can cause infections and serious damage to the blood vessels, nerves, and many other tissues and organs.

What Is Hypoglycemia?

Hypoglycemia describes abnormally low blood sugar levels, typically below 70 mg/dL. Your doctor is the best person to talk to about what level is considered low for you. People with diabetes typically develop hypoglycemia if they take too much insulin or other diabetes medications. Your blood sugar levels may drop if you don’t eat enough after giving yourself a certain insulin dose. Intense exercise can also lower your blood glucose as your cells use sugar to fuel your workout.

Sudden or dramatic increases or decreases in blood sugar levels can be dangerous and lead to life-threatening consequences if not detected early.

Who’s at Risk for Developing Brittle Diabetes?

Brittle diabetes is a relatively rare disease. People develop it for a variety of reasons. Those with type 1 diabetes are at the highest risk because their bodies can’t make insulin on their own. This is because the immune system attacks the pancreas — the organ that makes and releases insulin. Without proper insulin regulation, it’s easy to have blood sugar swings.

If you have type 2 diabetes, you can still develop brittle diabetes, but it’s less common. It’s more likely to affect insulin-dependent people, meaning those who need insulin shots.

Research shows that brittle diabetes tends to develop in young adults. Most cases happen in people under the age of 40. Females are more likely to have brittle diabetes than males, according to Diabetes.co.uk.

People With Physical Health Conditions

Certain health conditions raise your risk of hyperglycemia and hypoglycemia. For example, you’re more likely to have high blood sugar swings if you’re living with:

• Hormonal imbalances, like Cushing’s syndrome (excess cortisol hormone), thyrotoxicosis (excess thyroid hormone), or acromegaly (excess growth hormone)
• Bodywide infections
• Lipodystrophy (abnormal fat loss in certain parts of the body)

Low blood sugar swings can occur from conditions that affect your digestive system. Untreated celiac disease — which is a gluten intolerance — can prevent your body from absorbing nutrients from food. Gastroparesis is a condition that slows digested food moving from your stomach to your intestines.

People With Mental Health Conditions

Your mental health affects how well you’re able to take care of yourself. People who are stressed or living with depression and/or anxiety are at risk of brittle diabetes. You may have trouble remembering to take insulin or following other healthy lifestyle choices when living with diabetes. Chronic or long-term stress can also lead to insulin resistance — meaning your cells don’t know how to use insulin properly.

Eating disorders like diabulimia can also lead to brittle diabetes. Doctors diagnose diabulimia when someone with type 1 diabetes limits their insulin, forcing their body to lose weight. Other eating disorders related to brittle diabetes include bulimia (a condition where a person forces themselves to purge or vomit) and anorexia (a condition in which a person restricts their food intake). Consuming alcohol, opioids, and cocaine can also lead to dangerous fluctuations in blood sugar levels.

Older adults with memory problems might have trouble taking their medications correctly to manage their diabetes. Those with dementia can have blood sugar swings because they forgot they already took insulin or took the wrong type or dose.

People Who Can’t Access Resources

Diabetes treatments — including insulin — can be expensive. Some people choose to ration their insulin, which can become dangerous. This raises your risk of extremely high blood sugar levels. Testing supplies can also be costly. Those who don’t regularly test their blood sugar with a glucose monitor have problems keeping their levels in check.

Food insecurity leads to brittle diabetes as well. When you don’t have access to proper food, you may experience blood sugar swings. This can raise your average blood sugar levels over time, as measured by an A1C test.

What Are the Symptoms of Brittle Diabetes?

If you have brittle diabetes, you’ll experience frequent and sudden changes in your blood sugar levels. It’s important to know the signs of hyperglycemia and hypoglycemia so you can get treatment.

Symptoms of hyperglycemia usually look like type 1 diabetes symptoms and include:

• Weight loss
• Increased hunger and thirst
• Frequent urination
• Blurred vision
• Headaches
• Cuts and sores that don’t heal as quickly as they should
• Infections

People with brittle diabetes are also at risk of developing diabetic ketoacidosis (DKA). DKA is a life-threatening complication that occurs with extremely high blood sugar levels. If you begin experiencing any of these symptoms, get medical attention immediately:

• Abdominal pain
• Nausea and vomiting
• Fruity breath
• Confusion or trouble thinking
• Dehydration
• Racing heartbeat

Symptoms of hypoglycemia to look out for include:

• Extreme hunger
• Sweating that leads to chills
• Trembling or shaking
• Changes in mood (irritability), trouble thinking, and disorientation
• Racing heartbeat
• Slurred speech
• Lightheadedness or feeling dizzy

How Is Brittle Diabetes Treated?

Your brittle diabetes treatment plan will depend on what’s causing your symptoms. It can include medical devices to manage your diabetes or addressing any underlying health conditions.

Diabetes Medical Devices

If you need help controlling insulin doses, your doctor may suggest an insulin pump. This device delivers small doses throughout the day to keep your blood sugar levels in a healthy range.

A continuous glucose monitor (CGM) constantly checks your blood glucose. It alerts you when your levels rise too high or fall too low. A CGM can also find patterns so you can learn more about what causes your blood sugar swings.

Treating Underlying Health Conditions

If your doctor believes your brittle diabetes is due to another health condition, they’ll recommend ways to treat it. Examples include:

• Eating a gluten-free diet to treat celiac disease
• Taking medication and seeing a mental health professional to address stress, anxiety, or depression
• Changing your diet or taking medication to treat gastroparesis

A social worker can also help you find access to affordable diabetes treatments and resources to address food insecurity.

Find Your Team

On myT1Dteam, the social network for people with type 1 diabetes and their loved ones, more than 3,300 members come together to ask questions, give advice, and share their stories with others who understand life with type 1 diabetes.

Are you living with brittle diabetes? How were you diagnosed? What treatments do you currently take? Share your experience in the comments below, or start a conversation by posting on your Activities page.