When your blood sugar levels rise too high, you experience hyperglycemia. And when your levels drop too low, you experience hypoglycemia. If you have brittle diabetes, you frequently fluctuate between these two extremes.
These swings can interfere with your life: Everything from your ability to work to taking care of yourself and your family. You may also experience frequent emergency room visits and hospitalizations due to your hypoglycemic and hyperglycemic episodes.
For some people with diabetes, normal blood sugar levels are:
Between 80 and 130 mg/dL before a meal; and
Lower than 180 mg/dL two hours after eating
However, your doctor may have other blood sugar levels you should try to maintain. When your doctor sets your target levels, they consider your age, overall health, what type of diabetes you have, and how long you've had diabetes.
Labile diabetes or uncontrolled diabetes are other names for brittle diabetes.
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It is difficult to determine how common brittle diabetes is in the US because the medical community lacks concrete diagnostic criteria for the condition. One definition of brittle diabetes is a "life constantly disrupted by episodes of hypoglycemia or hyperglycemia."
An older study analyzing British patients estimated that one in 1,000¹ people with diabetes would experience brittle diabetes.
People who experience frequent and uncontrolled blood sugar swings share common risk factors:
Brittle diabetes mostly affects people with type 1 diabetes. While people with type 2 diabetes can have difficulty managing their blood sugar levels, they rarely experience the dramatic blood sugar fluctuations associated with brittle diabetes.
Irregular meals, snacks, and not following your insulin schedule can cause hyperglycemia and hypoglycemia. You can easily miss fluctuations in your blood sugar if you are not testing it regularly. However, some people will experience brittle diabetes even when observing their treatment plan closely.
Comorbidity is when you have two or more health conditions simultaneously. You are at an increased risk for brittle diabetes if you also have gastroparesis or celiac disease.
People with diabetes are at an increased risk for a digestive disorder called gastroparesis. If you have this condition, your stomach wall muscles are ineffective at moving food to your small intestine. This results in delayed gastric emptying.
Delayed gastric emptying and blood sugar levels are intertwined. If you have high blood sugar levels, you may be at an increased risk for gastroparesis. Conversely, people with gastroparesis may have trouble managing their blood glucose levels. One long-term study estimates that gastroparesis affects 5%² of people with type 1 and 1% with type 2 diabetes.
If you have celiac disease, you experience an autoimmune response after eating gluten, a protein found in certain grains. Approximately 8%³ of people with type 1 diabetes also have this condition. Celiac disease has links to increased hypoglycemia and other diabetes complications when left untreated.
Disorder eating describes behaviors that do not meet the diagnosis criteria for another eating disorder. These behaviors include dieting, binging, forced vomiting, laxative use, or excessive exercise. Research has shown that 15.9% of men and 37.9% of women⁴ with diabetes experience disordered eating behaviors. Disordered eating behaviors are detrimental to people with diabetes, as healthy food and exercise habits are crucial to managing the disease.
Unstable and fluctuating blood sugar levels cause brittle diabetes. Some people do not recognize when their body experiences hypoglycemia or hyperglycemia.
A blood sugar reading that falls below the normal range is called hypoglycemia. For many people, this is a glucose reading below 70 mg/dL. However, your doctor may have a different target blood sugar for you.
When you become hypoglycemic, you need to take immediate action to raise your blood sugar back to the normal range. Everyone experiences hypoglycemia differently. Common signs that your blood sugar is too low include:
Mood changes, such as feeling nervous, anxious, irritable, or impatient
Shaking, sweating, or chills
Feeling dizzy or like you might pass out
A fast heartbeat
Hunger or nausea
As hypoglycemia progresses, more serious symptoms include:
Feeling sleepy or weak
A pale complexion
A tingling sensation in the lips, tongue, or cheeks
If you're asleep, you may have a nightmare or cry out/vocalize
If left untreated, hypoglycemia can lead to coma or death.
The symptoms of hyperglycemia can be more subtle than hypoglycemia:
Urinating more often than usual
Untreated high blood sugar can lead to a serious condition called diabetic ketoacidosis (DKA). When you experience DKA, your liver produces acids called ketones. These acids can build up to a toxic level in your body.
Abdominal pain, nausea, or vomiting
If you experience DKA, seek immediate medical care.
You should see your doctor if you have uncontrolled blood sugar swings despite following your treatment plan.
You should call 911 if you are hypoglycemic and can't raise your blood sugar or if you experience symptoms of DKA.
The successful management of diabetes can require lifestyle modifications. If you struggle to follow your treatment plan, let your doctor know. Your doctor may be able to make suggestions or provide advice on living a healthier lifestyle.
The treatment of brittle diabetes relies on addressing the underlying hypoglycemia and hyperglycemia. You can manage any blood sugar fluctuations by adhering to your treatment plan. Follow your healthcare providers' recommendations for meals, insulin doses, and exercise.
If you continue to have uncontrolled blood sugar levels, technology can give you better control.
An insulin pump is an alternative to daily injections. Many insulin pumps have two components: The pump itself and an infusion set. The pump is approximately the size of a deck of cards and clips onto your clothing. The infusion set consists of a thin tube and a tiny catheter underneath your skin. The thin tube connects the pump to the catheter.
Insulin pumps are beneficial because you can program the devices to deliver insulin day and night, even while you sleep. They are also helpful because you don’t need to inject insulin multiple times per day. This is ideal for people with a needle phobia, the elderly, and children.
A pump mimics the way a healthy pancreas delivers insulin when you need it. There are several insulin pumps on the market in the US. You can program these pumps to provide continuous (basal) insulin and mealtime (bolus) infusions.
Insulin pumps are an effective therapy, but they may not be right for everyone. You have to be capable of maintaining and troubleshooting your pump. You also have to be prepared to administer insulin injections if your pump isn't working properly.
Some insulin pumps can be programmed to work with a continuous glucose monitor (CGM).
Regular blood sugar checks are a daily part of diabetes management. Instead of the traditional finger-prick method, individuals can wear a continuous glucose monitor to track their blood sugar levels. CGMs are small devices, usually worn on the upper arm or abdomen. You can receive a blood sugar reading through a paired device, either a dedicated CGM receiver or your smartphone. Some insulin pumps and CGMs can be programmed to work together to deliver insulin as needed.
Long-term research has shown that pancreas transplants can benefit individuals with brittle diabetes. According to a paper published in Diabetes Care, a pancreas transplant "restores normoglycemia without the risk of hypoglycemia and prevents, halts, or reverses the development or progression of secondary diabetes complications."
Your doctor could consider you for a pancreas transplant if your blood sugar levels remain unstable despite medical treatment. Not everyone will be a candidate for this surgery, as you must be healthy enough to have the operation. As with most organ transplants, there are waitlists to receive a donor pancreas.
The best way to prevent brittle diabetes is to abide by your treatment plan. Follow your scheduled meal times, insulin dose times, and recommendations for exercise. If you have disordered eating, reach out for help.
You can reduce your risk of brittle diabetes by knowing the signs of hyperglycemia and hypoglycemia. Follow your treatment plan, including regular blood sugar checks.
If you give yourself injections and manually check your blood sugar levels, ask your doctor if an insulin pump or continuous glucose monitor would be right for you.
You may still experience brittle diabetes even if you strictly adhere to your treatment plan. Ask your doctor if you are a candidate for a pancreas transplant.
How does gastroparesis affect people with diabetes? | National Institute of Health
Brittle diabetes | Cleveland Clinic
Hypoglycemia (Low blood sugar) | American Diabetes Association
Diabetic ketoacidosis | Center for Disease Control and Prevention
Blood sugar testing: Why, when and how | Mayo Clinic
Insulin pump dosing | Diabetes.co.uk
Pancreas transplant alone (2013)