Managing Cystic Fibrosis-Related Diabetes (CFRD)

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1 Managing Cystic Fibrosis Related Diabetes (CFRD) Managing Cystic Fibrosis-Related Diabetes (CFRD) An Instruction Guide for Patients & Families 3rd Edition DANA S. HARDIN, M.D. University of Texas Southwestern Medical School Dallas, Texas CAROL BRUNZELL, R.D., C.D.E. Fairview-University Medical Center, Minneapolis, Minnesota KATHLEEN SCHISSEL, R.D. Fairview-University Medical Center, Minneapolis, Minnesota TERRI SCHINDLER, R.D., M.S. Children s Hospital Medical Center, Cincinnati, Ohio ANTOINETTE MORAN, M.D. University of Minnesota, Minneapolis, Minnesota Copyright 2002 Cystic Fibrosis Foundation 1

2 Address Content-Oriented Correspondence to: Dana S. Hardin, M.D. Associate Professor of Pediatrics, Division of Endocrinology Clinical Medical Director of Children s Endocrinology University of Texas Southwestern Medical Center Harry Hines Blvd. Dallas, Texas dana.hardin@utsouthwestern.edu Address All Other Correspondence to: Cystic Fibrosis Foundation 6931 Arlington Road Bethesda, Maryland (800) FIGHT CF info@cff.org 2

3 Table of Contents Introduction 5 Chapter 1 What is Cystic Fibrosis-Related Diabetes (CFRD)? 7 Chapter 2 Medical Treatment of CFRD 9 Why treat high blood sugar levels in CFRD? What are the goals for blood sugar levels? Insulin What does it do? Types of insulin: short-acting vs. longer-acting Storage and handling of insulin How often is insulin given? How to give insulin When does the body need extra insulin? Oral agents Insulin pumps Chapter 3 Blood Sugar Testing 17 This chapter reviews blood sugar testing. It is designed to help you understand why your blood sugar is tested at home and to learn how and when to test it. Chapter 4 Tests Used to Diagnose CFRD 21 There are several different tests which can be used to diagnose CFRD. This chapter reviews each method. Chapter 5 Medical Tests and Clinical Examinations Used in the Management of CFRD 23 This chapter reviews the current recommendations for management of CFRD. 3

4 Table of Contents Chapter 6 Nutrition and CFRD 25 Importance of calories in CF Food groups Carbohydrate counting Alcohol ingestion Delayed meals Artificial sweeteners Chapter 7 Low Blood Sugar (Hypoglycemia) 37 This chapter reviews the symptoms, causes and treatment of low blood sugar. Chapter 8 Sick Day Management 41 When you are sick, maintaining good blood sugar control becomes a greater challenge. This chapter will help you learn how to manage your blood sugar when you are sick. Chapter 9 Exercise 43 Exercise is important for your physical well-being. The effect of exercise on CFRD is reviewed in this chapter. Chapter 10 CFRD Without Fasting Hyperglycemia and Other Types of Abnormal Glucose Tolerance Found in CF 45 People with CF can have several types of abnormal glucose tolerance. These are defined differently than CFRD. Diagnostic criterion and management recommendations are reviewed in this chapter. Chapter 11 Your Caregiver s Role in the Management of CFRD 47 This chapter reviews the members of the diabetes care team and provides suggestions for your role on the team. Chapter 12 Food Lists: Carbohydrate Units in Common Food Items 49 This chapter provides a handy reference of the carbohydrate content of all your favorite foods. It includes an area for you to create your own personal food list. It also includes a sample meal plan, and a place for you and your dietitian to develop your personal meal plan. Glossary 67 Throughout the text, words are highlighted in bold. These words are defined in this glossary as a handy reference. The glossary is organized alphabetically. Cystic Fibrosis Foundation 71 4

5 Managing Cystic Fibrosis Related Diabetes (CFRD) Introduction If you are reading this manual, you or someone you love has probably been diagnosed with cystic fibrosisrelated diabetes (CFRD). This instruction guide is intended to supplement information provided by diabetes caregivers and pulmonologists. Each chapter discusses different topics important for CFRD management. At the beginning of each chapter are educational goals to help you focus on the important points. Although there are several handbooks for people with other forms of diabetes, there has been no widely available manual specifically tailored for people who have both cystic fibrosis and diabetes. The Cystic Fibrosis Foundation, and the authors, hope this guide will fill this need and be helpful to you. Full support to produce this document was provided by the Cystic Fibrosis Foundation. You may be feeling very stressed by having an additional diagnosis like diabetes. You may even feel hopeless because you believe diabetes is the last straw. We understand these feelings and want to encourage you to learn as much as possible about CFRD, so you will have a better sense of control of your diabetes management. Despite your CFRD, you should be able to do all the things you want to do, including eating the foods you like. Although we have incorporated all that is currently known about CFRD into this manual, there is still much that we do not know. The Cystic Fibrosis Foundation plans to revise this guide every few years to provide the most current information to you. In the United States, blood sugar levels are reported as milligrams per deciliter (mg/dl). However, in Canada and in Europe, blood sugar levels are reported as millimoles per liter (mmol/l). Both values are included throughout this document. It is the shared goal of the authors and the Cystic Fibrosis Foundation that this handbook will help you and your family to better understand the unique nature of CFRD, so that you and your care providers can better manage this disease. 5

6 Managing Cystic Fibrosis Related Diabetes (CFRD) Notes 6

7 What is Cystic Fibrosis- 1 Related Diabetes (CFRD)? EDUCATIONAL GOALS At the end of this chapter, you should be able to: Recognize that CFRD is a common problem, especially in adults; Understand how the body normally uses insulin to metabolize food; Recognize differences between CFRD and type 1 or type 2 diabetes; Recognize the causes of CFRD; Understand the symptoms of CFRD. CFRD is a Common Problem Diabetes is extremely common in people with CF, especially as they get older. One study found that up to 75 percent of adults with CF have some form of glucose intolerance and 15 percent have frank CFRD. What is Diabetes? Diabetes is an abnormal condition resulting in weight loss and other problems, such as lack of energy. Normally when you eat, food breaks down into sugar, fat and protein. Sugar enters your bloodstream and blood sugar levels rise. The increase in blood sugar signals the pancreas to secrete insulin. Insulin works by helping protein, fat and sugar leave the blood and enter the cells where they are used for energy. People with diabetes either do not have enough insulin, or do not respond to insulin normally; thus insulin is not available to help sugar leave the bloodstream and enter cells. Therefore, people with diabetes do not efficiently convert food into energy. If you have CF and diabetes, then you have a unique type of diabetes which is called cystic fibrosis-related diabetes (CFRD). The reason that there is a special name for CFRD is because this disease is not the same as diabetes found in people who do not have CF. It is important for you, your family and your caregivers to understand that the diagnosis and treatment of CFRD is not exactly like the diagnosis and management of other types of diabetes. How CF-Related Diabetes Relates To Non CF Diabetes The most common types of diabetes are called type 1 and type 2 diabetes. CFRD has features of both type 1 and type 2 diabetes. Type 1 diabetes, formerly called insulin-dependent or juvenile onset diabetes, is the type of diabetes that is most often found in childhood. People who have type 1 diabetes are not able to make any insulin, and must take insulin to stay alive. This is why type 1 diabetes is sometimes called insulin-dependent diabetes. If someone with type 1 diabetes misses insulin doses, he/she becomes very sick and develops ketoacidosis (a life-threatening alteration in the blood acidity). Type 2 diabetes, formerly called non-insulin dependent or adult onset diabetes, is caused by lack of normal response to insulin. This type of diabetes occurs most often in people who are older than forty and who are overweight. People with type 2 diabetes generally do not develop ketoacidosis, but they can become very sick when their blood sugar level is too high. People with type 2 diabetes do not always require insulin to manage their diabetes. 7

8 Chapter 1 / What is Cystic Fibrosis Related Diabetes (CFRD)? Some may take pills, and others may be treated with insulin. Weight loss diets are recommended for most of these people, and some may be treated only with diet and exercise. Causes of CFRD CFRD has some features of both of these types of diabetes, but it is a separate condition. As in type 1 diabetes, the CF pancreas does not make enough insulin. Thus people with CF have insulin deficiency. This is probably because of pancreatic scarring due to thickened secretions. Most people with CF make less insulin than normal, however, not everyone with cystic fibrosis develops diabetes. If you have CF, another reason you can develop diabetes is because of insulin resistance. Insulin resistance means that your body does not use insulin normally, thus more insulin is required to metabolize food. The combination of insulin deficiency and insulin resistance can cause people with CF to develop diabetes more frequently than the general population. One reason that you may have insulin resistance is because of chronic underlying infection, even when you are not acutely ill. Another cause of insulin resistance is higher than normal levels of a hormone called cortisol. This hormone is a steroid and is made in the adrenal glands. Our bodies make higher than normal cortisol levels in response to stress. High cortisol levels can interfere with insulin action. Cortisol levels can also increase from steroid-containing medications (called corticosteroids). At times these medicines are necessary for treatment of lung disease. When such medicines are used, they can temporarily worsen your blood sugar control. In people with CF who do not already have diabetes, use of corticosteroids can temporarily cause diabetes. CFRD can occur only some of the time (intermittent CFRD), or can occur at all times (chronic CFRD). If you have intermittent CFRD you may only need to take insulin during infections, or with steroid treatment. If you have chronic CFRD, you require insulin treatment at all times to prevent unacceptably high blood sugar levels. Although CFRD is different than type 1 or type 2 diabetes, the development of diabetes-induced complications is similar in all types of diabetes. These complications include eye, kidney, circulation and nerve problems. The complications from diabetes are caused by continuous high blood sugar levels over several years. The goal of diabetes therapy is to maintain blood sugar in a range as close to normal as possible. This goal is shared by people with all forms of diabetes and helps prevent development of complications from diabetes. Symptoms of CFRD Common symptoms of diabetes, such as frequent urination (polyuria) and frequent drinking (polydipsia), are caused by high blood sugar levels (hyperglycemia). These symptoms may not be recognized in CF. People with CF often drink a lot of fluids because of dry mouth, and thus urinate more often than normal. Other symptoms of CFRD include excessive fatigue, weight loss or difficulty maintaining weight, and unexplained worsening of pulmonary function. Because these symptoms can also be associated with infection and lung disease, diabetes may not be recognized unless specific tests are done to look for it. Unlike people with type 1 diabetes, people with CF usually do not develop ketoacidosis. Anytime you have unexplained weight loss, or difficulty gaining weight, your CF Foundation-accredited care center should do tests to look for diabetes. If you already have diabetes and you are having problems with your weight, you need to review your diabetes management with your diabetes physician. Diagnosis and management of CFRD should be coordinated with your CF healthcare needs. Contact your local Cystic Fibrosis Foundation care center with questions about your concerns in developing diabetes. You can locate the nearest care center by accessing the CF Foundation Web site, or by calling (800) FIGHT CF. 8

9 Medical Treatment of CFRD 2 EDUCATIONAL GOALS At the end of this chapter, you should be able to: Understand the role of insulin in the metabolism of nutrients in food; Understand the effect of insulin deficiency in CF; Understand the different types of insulin and how they work; Understand the oral agents and why they are not commonly used to treat CFRD; At the present time, the only medication which has been proven to be effective for treatment of CFRD is insulin. Therefore, it is important for you to learn how insulin works and learn about the different types of insulin. What is Insulin? Insulin is a hormone, which lowers blood sugar levels. It is made in the pancreas by special cells, called beta cells. These cells are scattered throughout the pancreas in the islets of Langerhans. Production of insulin is one of the endocrine functions of the pancreas. Another part of the pancreas, called the exocrine pancreas, makes digestive enzymes which are secreted into the intestine to help digest food. Most people with CF have damage to their entire pancreas and do not make enough digestive enzymes, thus they must take enzyme supplements. People with CF who do not require enzyme supplementation do not usually develop CFRD. What Insulin Does Insulin helps the cells of your body take up the nutrients that you eat to be used for energy and growth. Food is made up of carbohydrates (sugars and starches), protein and fat. Insulin has specific actions on each of these food groups. Carbohydrates are converted to sugar for the body s immediate energy needs. Insulin allows the sugar to pass from the bloodstream into the cells where it is burned for energy. The body cannot turn sugar into energy without insulin. If insulin is not available, sugar builds up in the blood until it spills into the urine. This loss of sugar in the urine causes the diabetic symptoms of polyuria (urinating frequently) and polydipsia (drinking frequently). Muscle tissue is made up mostly of protein. Insulin allows the cells of the body to take up the building blocks of protein (amino acids) to build up muscle tissue. If there is not enough insulin, protein breakdown and muscle loss occurs. Loss of muscle can affect your breathing because respiratory function depends on good muscle strength. Finally, insulin allows dietary fat to be stored in the body as body fat. Without enough insulin, the body s fat stores become depleted and weight loss occurs. People with CF have decreased production of insulin. When your insulin production becomes very low, CFRD develops, and you need to be treated. At this time, insulin is the only medication proven by research to be effective for the treatment of CFRD. Insulin can only be given by injections. In the past, insulin came from the pancreas of cows and pigs. However, now most people with diabetes use human insulin. This insulin does not actually come from humans, but has the same genetic makeup as human insulin. It is produced by using complicated genetic engineering. There are no known advantages of one brand of insulin over another brand. 9

10 Chapter 2 / Medical Treatment of CFRD Types of Insulin Several companies make many different types of insulin. Insulin types are grouped by how long they last in the body. The two broad classes of insulin are short-acting, such as Regular, Lys-Pro (Humalog), and Aspart (Novolog), and longer-acting types of insulin, such as NPH, Lente, Ultralente, and Glargine insulin. Insulin action (when it peaks in activity, and how long it lasts) may vary from person to person. There is also some variability from one day to the next in the same person. Rapid-Acting Insulins Humalog and Novalog insulin have more rapid onset of activity (15-25 minutes) and have peak activity in 30 to 90 minutes. They are generally gone from the body after two to four hours, but can last as long as five hours. They can be given five-15 minutes before the meal. Either of these may be right for you if you do not know how much you will eat until you begin eating, if you exercise following a meal, if you do not like to snack, or if you have problems with low blood glucose levels in between meals. Short-Acting Insulin Regular human insulin begins to act approximately 30 minutes after being injected. It has its peak effect two to three hours after the injection and lasts six to eight hours. There may be variability in these times from person to person. Regular insulin should be given at least one-half hour before eating so that it is working as your food is digested. If you eat frequent snacks, regular insulin may be helpful because one injection can cover a meal and a snack. Intermediate-Acting Insulins NPH insulin is made with zinc and a protein, called protamine. These compounds allow NPH insulin to be absorbed by the body more slowly. Human NPH has its peak activity six to eight hours after injection and lasts an average of 13 hours. However, the peak and the duration of activity may vary from person to person. Lente insulin has a peak action that occurs in seven-15 hours and can last as long as 18 hours. Long-Acting Insulins Ultralente insulin lasts about 18 hours, and, for some people, up to 24 hours. It acts primarily as a background, or basal, insulin because it has only a small peak in activity which occurs at about 10 hours. Glargine (Lantus) is called a basal insulin, because one dose provides constant, even background insulin for about 24 hours without any peak. Basal insulin does not provide the extra insulin needed to cover food, so people who take Glargine still need to cover the carbohydrates in their diet with rapid-acting insulin. Glargine cannot be mixed in the same syringe with other insulins. Many CF patients only require short-acting insulin before meals and snacks. However, long-acting insulin at bedtime is useful if you have high blood sugar levels before breakfast. Long-acting insulin may be given in the morning to cover late afternoon snacks. Generally your physician will know to add this if your before supper blood sugar is consistently high. INSULIN PREPARATIONS Insulin Preparations Onset (hrs) Peak (hrs) Duration (hrs) Regular 0.5 to 1 2 to Humalog/Novolog to NPH 1 to to Lente 1 to to Ultralente 4 to 8 10 to Glargine 2 to 4 none 24 10

11 Managing Cystic Fibrosis Related Diabetes (CFRD) General Principles of Insulin Therapy Background Insulin Everyone needs a small amount of insulin at all times. These low levels of insulin are often called background or basal insulin. The pancreas works to make this insulin. People with type 1 diabetes do not have the ability to make background insulin. This is one reason that they become so sick when they do not receive insulin injections. Most people with CF make insulin, they just make less insulin than people without CF who do not have diabetes. Many people with CFRD do not require injections of long-acting insulin because they make background insulin. Meal Coverage A normal pancreas secretes insulin as a bolus to cover the meal you are eating. Short-acting insulin is given before meals to mimic this extra insulin bolus. Generally, the best way to judge a pre-meal insulin dose is to account for the carbohydrate content of the meal. This will be discussed in more detail in the chapter on dietary management. (Chapter 6) Correction If your blood glucose is too high, you can add short-acting insulin to your usual insulin dose to correct it. Generally one unit of short-acting insulin will lower your glucose level approximately 50 mg/ dl. Work with your healthcare providers to determine your actual correction dose. How Often is Insulin Given? Most people with CFRD require two or more injections of insulin per day to control blood sugar levels. In general, the more often a person with diabetes takes insulin, the better the blood sugar control will be, and the more flexible the person s schedule can be in terms of when and what they eat. People with very consistent eating habits can sometimes be effectively treated with just two shots per day, by mixing long and short-acting insulin together, and giving the dose before breakfast and supper. However, this regimen may not work well in people with CFRD who have irregular eating habits, or who require flexibility in what and when they eat. Many people with CFRD report problems with low blood sugar on this regimen. Multiple injections per day can allow you to eat as much as you want, whenever you want, and still achieve excellent control of your blood glucose levels. Most people with CFRD have trouble with high blood sugar levels after meals. However, your blood sugar may be completely normal when you have not eaten for four or more hours. Thus many people with CFRD need only to be given short-acting insulin before each meal. Long-acting insulin is added only when necessary to prevent high blood sugar in the morning, or to cover afternoon snacks. Our goal is to give insulin so that its peak occurs when sugar from your meal is absorbed into your blood stream. Your insulin type, and the time it is given, should be timed with your schedule of eating, activity, and sleeping. It is important that you provide your caregiver with as much information as possible about your schedule. The best blood sugar control can only be achieved if insulin shots fit your individual routine. 11

12 Chapter 2 / Medical Treatment of CFRD Some people with CF may have high blood sugar levels only during night-time nasogastric or gastrostomy drip feeding (also called milk drips or tube feedings ). If this is the only time you have problems with hyperglycemia, you may be given one injection of longer-acting insulin, or a combination of longer-acting plus short-acting insulin, at the start of the feeding. Times When You May Need More Insulin When any person becomes acutely ill, his or her insulin needs increase. People with CF are not an exception. Although people without diabetes can make more insulin in their pancreas when they are sick, people with CFRD cannot meet their increased insulin needs, and their blood sugar increases. It is important to recognize that blood sugar readings may increase during illness. Adequate dosing of insulin during illness will help prevent weight loss during illness, and will ensure a quicker recovery. It is also important to recognize that sudden high blood sugar levels may indicate that the body is stressed. High blood sugar levels may be the first sign that a little cold is really a more serious infection requiring more aggressive treatment. Always notify your physician if your blood sugar levels suddenly become high. Storage and Handling of Insulin Unopened bottles of insulin should be stored in the refrigerator. Once opened, a bottle of insulin is good at room temperature for one month, or longer, if kept in the refrigerator. Many people like to inject room temperature insulin because cold insulin may sting. To warm the insulin, you may roll the bottle between your hands for one to two minutes before withdrawing insulin from the bottle. Alcohol wipes should be used to clean the top of the insulin bottle before insulin is withdrawn. Regular, Humalog and Novolog insulin are clear in appearance and should be discarded if they become cloudy. NPH, Lente, and Ultralente insulin are cloudy in appearance. Any bottle of insulin which appears clumpy should be discarded. If Regular, Humalog or Novolog insulin appear cloudy, they should also be discarded. Insulin should be discarded if it freezes or if it is exposed to extremely hot temperatures (greater than 85 Fahrenheit). This can happen if insulin is left in a car or in the sun. Insulin in cartridges, for use with insulin injection pens, should be stored in the refrigerator until they are loaded into the pen. Once loaded into the pen, insulin cartridges containing Regular or Humalog insulin are good for twenty-eight days. Insulin cartridges which contain NPH insulin are good for one week. Insulin injection devices containing insulin should be stored at room temperature and should never be left in a hot environment, for example, the glove box of the car. How Insulin is Given Syringe and Needles Insulin can be given using a syringe with a needle. Insulin syringes measure insulin as units per cubic centimeter (cc). All types of insulin marketed in the U.S. contain 100 units of insulin per cc (U-100 insulin). Standard insulin syringes hold either 3/ 10cc (30 units), 1/2cc (50 units) or 1cc (100 units). The 3/10 cc syringes have larger distances between the unit lines and are thus easier to use when measuring small doses of insulin (30 units or less). Most likely, this is the size of insulin syringe you will use. Needles come in different widths. Needles are sized such that the largest number is associated with the smallest width needle. For example, a thirty-one gauge needle is the smallest needle made, while a twenty gauge needle is very large. Most insulin syringe needles are gauge. Needles may also come in different lengths. Many people prefer a short needle (such as 1 / 4 inch). It is important for you to remind your diabetes physician to specifically prescribe short needles if you prefer using them. 12

13 Managing Cystic Fibrosis Related Diabetes (CFRD) Injection Devices Several different companies make insulin injection devices. These devices are generally about the size of a ballpoint pen and have a very small needle which is used for giving insulin. Insulin is stored in a cartridge inside of the pen. Some pens are meant to be reused and have disposable cartridges of insulin. With these pens, you simply change the cartridge when insulin runs out. Other pens are disposable and are simply thrown away when the insulin in the cartridge is gone. Insulin cartridges for the pen can contain different types, or different mixes, of insulin. Similarly, disposable insulin pens are available containing different types of insulin. Your diabetes physician can help you determine the type of Insulin Injector insulin best suited for your needs. Insulin injection devices can improve the convenience of administering insulin. They can be carried easily in your purse or your pocket and are a very manageable way of taking insulin. An insulin injection device may be especially useful to you if you take only short-acting insulin before meals. These devices can easily be carried into restaurants. Insulin Pumps Instead of taking insulin by injections, some people with diabetes use insulin pumps (also called Continuous Subcutaneous Insulin Infusion or CSII). A pump delivers insulin through an infusion set (a thin short plastic tubing) which is inserted into the skin using a tiny needle. Once the tubing is in place, clear tape is placed over the site and the needle is removed. The infusion set is generally changed every two to three days. The pump is connected to the infusion set and is programmed to deliver a continuous dose of insulin, called a basal dose, throughout the day. Larger doses of insulin are given with meals or snacks; this is called a bolus dose. The pump offers the advantage of excellent control over blood sugar without the need to give multiple daily shots. It has been especially helpful in people who enjoy large snacks outside of meal times, and for anyone who is frustrated by taking multiple injections. However, any person who uses the pump should check his or her blood sugar levels four times per day. If you are not committed to checking your blood sugar levels at least this often, a pump may not the best choice of insulin administration for you. If you enjoy eating meals and snacks at varied times, the pump may be the best way for you to have control over your blood sugar levels. They have been used successfully in people with CFRD. Your diabetes caregiver can provide you with a video and written materials to help you become better acquainted with this exciting option for insulin delivery. 13

14 Chapter 2 / Medical Treatment of CFRD How to Give an Insulin Injection with a Syringe Before giving an insulin injection, always check the insulin bottle to be sure you are giving yourself the right type of insulin and that it has not expired. (a) Many people like to roll the bottle of insulin between the palms of their hands for a minute or two in order to warm the insulin. Some people feel that cold insulin stings. (b) Be sure to wipe the top of the insulin bottle with alco- Check for correct insulin (a) Clean top with alcohol wipe (c) Clean skin with alcohol wipe (e) 14 hol before you insert the needle into the bottle. (c) When you use both long- and short-acting insulin at one time, always withdraw the short-acting insulin in-to your syringe before you withdraw the longacting insulin. (d) Once you withdraw the proper amount of insulin, you should clean the place on your skin with an alcohol wipe (e) before inserting the needle. (f) Roll insulin bottle to warm (b) Withdrawing insulin (d) Inject insulin (f)

15 Managing Cystic Fibrosis Related Diabetes (CFRD) Where Insulin is Given Insulin can be given in several places, including the thigh, back of the arm and the abdomen. The best place for you will probably be where you have the most fat underneath the skin. The needle should be inserted just under the skin and into fat. It may be helpful for you to pinch up a fold of skin and fat before inserting the needle. You should try to pick a new place to give your insulin each time (also called rotating the injection site.) The illustration below shows some good places to give insulin. Insulin Injection Sites 15

16 Oral agents Although many people with CFRD wish they could take pills to treat their diabetes, at this time insulin is the only medical therapy recommended by the CF Foundation for treatment of CFRD. The reason pills were not recommended by the 1998 Consensus Conference on CFRD was due to the lack of research studies documenting the usefulness or safety of a pill in treating CFRD. However, several small studies have been published now and your physician may recommend a pill for you in certain situations. There are two major types of oral agents. Those which increase insulin secretion, and those which increase insulin sensitivity. Oral hypoglycemic agents, such as glipizide and glyburide increase insulin secretion. One commonly reported side-effect of these drugs in people with CF is low blood sugar. Drugs in the replaniglide class also work to increase insulin secretion, however, they have less reported side-effects of hypoglycemia. Drugs which increase insulin sensitivity, such as glucophage, also decrease glucose output from the liver. These drugs carry some risk of lactic acidosis, thus research trials are needed before they are used in CF. Recently, several companies have developed oral agents which both stimulate insulin secretion and improve insulin sensitivity. Studies are needed to determine whether they could be used to treat CFRD. 16

17 Blood Sugar Testing 3 EDUCATIONAL GOALS The goals of this chapter include: Increasing your awareness of why it is important to measure blood sugar levels; Increasing your understanding of how to measure blood sugar levels; Improving your understanding of when to measure blood sugar levels; Helping you learn the acceptable range for your blood sugar levels. Introduction to Home Glucose Monitoring People with diabetes need to check their own blood sugar levels at home so that adjustments in their insulin dose can be made. Good blood sugar control is important for preventing complications and improving health. Home glucose monitors, called meters, have given people with diabetes, and their families, the ability to check blood sugar levels quickly and accurately. Meters have changed diabetes management more than anything else in the past 20 years. People with diabetes need to measure their blood sugar levels at home using a meter. This is called self monitoring of blood glucose (SMBG). Self monitoring of blood glucose provides information which can help you and your physician adjust your insulin dosage so that you can achieve good blood sugar levels. Why Do Self Monitoring of Blood Glucose (SMBG)? There are many reasons why measuring blood sugar at home is important, including: Improving Diabetes Control Studies have clearly shown that checking blood sugar daily, and using the results wisely, result in improved blood sugar control. Improved blood sugar control results in improved body weight and decreases your chance of developing diabetic eye and kidney complications. Safety This is an important reason to test blood sugar levels. Checking the blood sugar may help prevent the development of dangerously low blood sugar levels by allowing you to recognize a downward trend in blood sugar before symptoms occur. Low blood sugar symptoms can occur when the blood sugar falls rapidly (for example from 300 to 150 mg/dl or 16.6 to 8.3 mmol/l), or when the blood sugar is truly below the normal safe range. A blood sugar test at the time of feeling low will help determine whether the symptoms are due to a rapid fall in glucose, or are due to seriously low blood sugar. We consider a truly low blood sugar level to be below 60 mg/dl (3.2 mmol/l), or in a preschooler, below 70 mg/dl (3.9 mmol/l). Glucose should be given if the blood sugar is low, but is not needed if the symptoms are due to a rapid fall in sugar. 17

18 Chapter 3 / Blood Sugar Testing Improved Nutritional Status High blood sugar levels indicate that your body is not using the food you eat effectively and can cause you to lose weight or have trouble maintaining your weight. Good blood sugar control will improve your nutritional status and will help you gain weight. Managing Illness During illness, you will probably need extra insulin. This is because insulin doesn t work well when your body is stressed. Frequent blood glucose monitoring during illness will help you know when you need more insulin. Keeping up with insulin needs during illness will help you maintain your body weight instead of losing weight when you are sick. Blood Sugar Testing Gives You a Sense of Control Over Your Diabetes Knowing your blood sugar, and adjusting your insulin to meet your body s needs, gives you control over your diabetes. You will probably feel better knowing your blood sugar levels, so that you can see how well you are managing your diabetes. Adjusting the Insulin Dosage (Pattern Management) When blood sugar levels are checked regularly and the results recorded, patterns of low or high blood sugar at certain times of day can be seen. This information can be used to help you and your physician adjust the insulin dose between appointments. If you take short-acting insulin before meals, you can use the blood sugar level (along with your amount of food and planned exercise) to decide how much insulin to take. The only accurate way to measure blood sugar levels at home is with a glucose meter. Studies have shown that you cannot accurately guess your blood sugar levels based on how you feel. SUGGESTED BLOOD SUGAR LEVELS Age Before Eating Bedtime (years) (No food for 2 hours) (before bedtime snack) mg/dl mmol/l mg/dl mmol/l 5 to to to to to and above 80 to to to to 7.8 If your blood sugar level is less than 100 mg/dl (5.5 mmol/l), add one carbohydrate unit or 15 grams of total carbohydrates (see nutrition section), to your bedtime snack. If your blood sugar level is less than 60 mg/dl (3.3 mmol/l) you should add one carbohydrate unit to your bedtime snack and should recheck your blood sugar between midnight and two a.m. If this happens more than once within a week, either reduce your dinner short-acting insulin or call your diabetes care provider for advice. 18

19 3 2 1 Managing Cystic Fibrosis Related Diabetes (CFRD) When to Check Blood Sugar Most physicians recommend that you check your blood sugar three to four times per day to help you determine how much insulin you need. Most people with diabetes check their blood sugar before breakfast, before lunch, after school or before supper, and before their bedtime snack. You should always check your blood sugar when you first wake up in the morning. One important difference between CFRD and other types of diabetes is that your post-meal blood sugar levels may be much higher than blood sugar levels from times when you have not eaten. For this reason, you may be asked to check your blood sugar two hours after eating a meal, instead of before eating. If you take long-acting insulin in the evening, check your blood sugar in the middle of the night once every two to three weeks, to make sure that low blood sugar does not occur while you are sleeping. If you receive night-time enteral feedings (sometimes called milk drips or tube feeding, ) you should check your blood sugar one to two times per week in the middle of the feeding. If you receive intermittent bolus feedings, you should check your blood sugar two hours after the bolus. A blood sugar level greater than 200 in the middle of a night-time enteral feeding, or two hours after a bolus, suggests a need for more insulin. Several times per week you should check your blood sugar two hours after your largest meal (a post-prandial blood sugar). The blood sugar reading two hours after a meal should be less than 200 mg/dl. (Check with your diabetes care team for what your personal goal should be.) If it is higher than 200 mg/dl on several occasions, you need more short-acting insulin before your meal. The more blood sugar levels you check, the more information you and the diabetes care provider will have for making the right decisions regarding your diabetes management. How To Do Self Monitoring of Blood Glucose Finger Sticks Checking your blood sugar requires that you obtain a drop of blood by pricking a small hole in your finger with a device called a lancet. A lancet is a spring loaded device with a needle specially made for gently obtaining blood from your finger tip. There are many good brands on the market which will help you obtain a good drop of blood without having to poke your finger too deeply. Before using a lancet, your hands should be washed with warm water to increase blood flow and to make sure they are clean. Washing your hands also helps remove any trace of sugar on the finger and helps prevent a falsely elevated reading. Occasionally, when you are away from home (e.g., camping, picnics), it is necessary to use alcohol to clean your finger. Under usual circumstances, however, alcohol, is not recommended because it dries out the fingertips. It is often helpful to place the finger you will use on a table top. Use the side of the finger, rather than the fleshy pad on the fingertip, because it may hurt less. After pricking your finger, if the drop is not coming easily, hold your hand down at your side to increase blood flow to your finger. Alternate the fingers you use for testing so your fingers don t become sore. Lancet used for checking blood sugar 19

20 Chapter 3 / Blood Sugar Testing Blood Sugar Meters There are many meters on the market. Each meter differs in the procedure necessary for use. Each brand of meter has test strips which are made to go with the meter. It is important to use the test strips appropriate for the meter and to follow company instructions for coding, cleaning, and checking the accuracy of your meter. It is also important that the test strips be kept in their bottle until use so that readings are accurate. Do not use generic or out-of-date test strips! Common Problems Causing Inaccurate Blood Sugar Test Results Finger is not clean and dry. Not following directions specific to the meter. Meter parts are dirty (e.g., with dried blood). Codes on strips and meter are not matched. Too small a drop of blood on pad. Test strips are past expiration date or have not been properly stored. Keeping good records and bringing the results to clinic visits, allows you and the diabetes team to work together more effectively to achieve good diabetes management. Recording Results Always record your results in a book even if your meter has a memory. Look for patterns in blood sugar readings at specific times of day which may signal a need to change the insulin dose. Recording blood sugar in a record book also allows you to note any special circumstances which might account for that blood sugar. For example, next to a low blood sugar reading you might note I did not eat enough or I exercised more than usual. Summary Good blood sugar control is important to your overall health. Your blood sugar level is best measured by a glucose meter. You should write down the time of the test, the date, how you feel, circumstances that may affect your blood sugar and the blood sugar value. These results, and the meter, should be brought to clinic appointments. If the results are consistently outside of the desired range, the insulin dose should be changed. You can call, mail, or fax the test results to your diabetes care provider. Your physician can recommend changes in insulin, or you can make some changes yourself. The longer you have CFRD, the more comfortable you will feel making adjustments in your insulin dose. Problems should be reported before the next scheduled appointment. Although the use of blood sugar testing adds extra time and expense to CFRD management, it is very important. Good diabetes control can only occur through the use of blood sugar testing. It is necessary for the whole family to be supportive in this effort. In many states it is the law that insurance companies have to pay for diabetes supplies. The local American Diabetes Association (ADA) can provide information about the laws specific for each state. 20

21 Tests Used to Diagnose CFRD 4 EDUCATIONAL GOALS At the end of this chapter, you should be able to: Be familiar with the different tests used to diagnose CFRD. Tests Used to Diagnose CFRD Casual Blood Glucose Levels A casual blood glucose level is one that is drawn without paying attention to the time of day, or to when a meal was last eaten. If this level is less than 126 mg/dl (7.0 mmol), it is unlikely that a person has diabetes. If this level is greater than or equal to 200 mg/dl (11.1 mmol), it means the person likely has diabetes. Glucose levels between 126 and 200 mg/dl ( mmol) are in a gray zone and indicate the need for more testing. The Cystic Fibrosis Foundation recommends that people with CF have a casual blood glucose level drawn at least once a year. Generally, this is done at your birthday visit. The 1998 CF Foundation Consensus Conference developed guidelines for clinicians to follow once they have measured your casual blood glucose. They are summarized below. Oral Glucose Tolerance Test The oral glucose tolerance test (OGTT) is sometimes recommended when CFRD is suspected. A patient must be fasting (nothing to eat or drink for 12 hours) before this test is done. To do an OGTT, blood is drawn to measure your baseline glucose level. Then you will be asked to drink glucose in a syrupy liquid (called a Glucola. ) Your blood sugar will be re-measured two hours later. Sometimes blood sugar is also measured at one hour and three hours, as well as at two hours. The blood sugar level obtained in response to Glucola (sometimes referred to as a glucose load ) determines whether or not a person has diabetes. Any person who has a blood sugar level greater than or equal to 200 mg/dl (11.1mmol) at two hours following this glucose load has diabetes. If the blood sugar drawn at baseline is greater than 126 mg/dl (7.0mmol), you have CFRD with fasting hyperglycemia, and insulin treatment should be prescribed. If the blood sugar drawn at baseline is less than 126 mg/dl, and the blood sugar two hours after drinking Glucola is greater than 200 mg/dl, you have CFRD without fasting hyperglycemia. Insulin treatment may be needed, but it is not always needed, with this type of CFRD. Hemoglobin A1C This test is not useful for making a new diagnosis of CFRD. It is used to monitor long term blood sugar control in patients with known diabetes. This will be discussed in greater detail under diabetes management. 21

22 Chapter 5 / Tests Used to Diagnose CFRD Summary of 1998 Cystic Fibrosis Foundation Consensus Conference Guidelines: Results of Casual Blood Glucose Level 1. If your casual blood glucose is less than 126 mg/dl (7.0mmol), no further testing needs to be done for one year, unless symptoms of diabetes develop. 2. If your casual blood glucose is mg/dl (7.0mmol), a fasting blood glucose, (done in the morning before breakfast), should be measured. If your fasting blood glucose is less that 126 mg/dl (7.0mmol), no further testing needs to be done for one year, unless symptoms are present. If your fasting blood glucose is greater than 126 mg/dl (7.0mmol), another fasting blood glucose should be checked. Some physicians may recommend an oral glucose tolerance test instead of obtaining a second fasting blood glucose. If the second fasting blood glucose level is higher than 126 mg/dl, you will require insulin treatment. 3. If the casual blood glucose is greater than 200 mg/dl (11.1mmol), it is likely that you have diabetes. Fasting blood sugar levels must be measured to determine if fasting hyperglycemia is present. If you have fasting hyperglycemia, you should be treated with insulin. Summary There are multiple ways your physician can diagnose CFRD. These include: 1. A fasting blood sugar greater than 126 mg/dl (7.0mmol) on two or more occasions. By definition this is CFRD with fasting hyperglycemia. 2. A casual glucose greater than 200 mg/dl (11.1mmol) on two or more occasions, with symptoms of diabetes. 3. A two hour glucose level greater than 200 mg/dl (11.1mmol) during an oral glucose tolerance test (OGTT). It is important to know whether or not you have CFRD with or without fasting hyperglycemia. This can be done with an OGTT or by a fasting blood sugar. See Chapter 10 for a discussion of the different types of CFRD and glucose intolerance. 22

23 Medical Tests and Clinical Examinations Used in the Management of CFRD 5 EDUCATIONAL GOALS At the end of this chapter, you should: Be familiar with the tests used for diabetes management; Understand routine management of CFRD. Tests Used for Management of CFRD Hemoglobin A1C (glycosylated hemoglobin) New red blood cells have a life span of about three months in normal healthy people. Hemoglobin A1C tells how much sugar is stuck to your red blood cells. Thus hemoglobin A1C tells how high your blood sugar levels have been for the previous three months and provides a useful indication to the physician about long-term blood sugar control. The hemoglobin A1C can be done at the time of a clinic visit and you do not have to be fasting. Although each clinic has its own normal values, in general the desired hemoglobin A1C for adults is less than seven percent. Urine Microalbumin Diabetes can be associated with kidney disease, so it is important for your physician to look for it. The amount of protein (albumin) in your urine is a good indication about the overall health of your kidneys. At the time of diagnosis with CFRD, and at least one time per year, you will be asked to provide a urine sample from which protein will be measured (a spot urine check). If the amount of protein is higher than normal in this sample, you will collect your urine for 24 hours. The amount of albumin can be accurately quantified from this 24 hour sample, and if too high, indicates that you have kidney disease. If you have kidney disease, there are medications available to treat it. Urine Sugar Monitoring Urine can be tested for sugar; however, this is not accurate for either diagnosis or management of diabetes. The blood sugar level at which sugar spills into the urine varies between persons, and sometimes from one time of day to another in the same person. Testing urine sugar should never be done as replacement for self-monitoring of blood glucose. Urine Ketone Testing Ketones are products made by the body when fat is used for energy instead of sugar. When ketones are present, they can be detected in the urine. Although you may know people with diabetes who monitor their urine for ketones, in general you will not have to check your urine for ketones. Although the reasons are not completely understood, people with CFRD generally do not develop a large amount of ketones, and therefore do not need to test their urine. Lipid Profile Serum lipids include cholesterol and triglyceride. Elevation of fasting cholesterol and triglyceride levels can indicate risk for heart disease and stroke. These are often referred to as the macrovascular complications of diabetes. People with type 1 and type 2 diabetes often have higher than normal risk for the development of these complications. Thus lipid profiles are routinely measured in these patients. At this time, people with CFRD are believed to be at low risk for the development of macrovascular complications, and in general, do not need to have routine lipid profile measurements. At this time, you will probably not receive routine screening unless you have a strong family history of stroke and heart disease. As we learn more about CFRD, this recommendation may change. 23

24 Chapter 4 / Medical Tests & Clinical Examinations Used in the Management of CFRD Other Management Tools Visits with the Diabetes Team Every three to four months, you should be seen by the diabetes team. At this time they will review your diet, your blood sugar control and insulin doses, and you will have a physical examination. These visits are an important part of your diabetes management. One goal of these visits is to maximize your medical therapy and dietary intake to prevent future problems. The physical examination will be especially designed to examine your insulin injection sites, to review your neurologic status and to examine your eyes. You should point out any new wounds, or wounds which have not healed normally, to your physician so they can be examined. Visits with the diabetes care team should occur in addition to your routine care for management of CF at your CF Foundation-accredited care center. Annual Ophthalmology Visits Diabetes can cause a type of eye disease called retinopathy. This eye disease can initially cause blurred vision, and eventually can lead to loss of eyesight. Most people with diabetes do not develop retinopathy for at least five years after diagnosis. However previous studies in people with CFRD suggest that retinopathy develops earlier than in people with other types of diabetes. You will need to see an ophthalmologist (eye physician) once per year to be certain that you have not developed retinopathy. If retinopathy occurs, the ophthalmologist can provide treatment for it. 24

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