What You Need to Know If You're Diagnosed with Type 1 Diabetes
By Dr. Francine Kaufman
If you or your child was recently diagnosed with type 1 diabetes, you probably have many questions about how to manage this new condition. Dr. Fran Kaufman explains glucose levels and glucose targets, types of insulin and insulin doses, the honeymoon phase, and more
Were you recently told that you have, or your child has, type 1 diabetes? If so, you were likely filled with emotions, concerns, doubts, and questions. You were probably informed that there are many concepts you have to learn and many tasks you need to master. Hopefully, you were signed up for diabetes education sessions taught by certified diabetes care and education specialists (CDCES). You may have felt like you were on shaky ground; and despite all this, you knew that the sooner you learned how to manage diabetes, the better you would feel. Attitude matters, and the best attitude to have is a positive one – so hopefully you’re learning the tasks to successfully manage your diabetes.
Diabetes is a life-long condition. It is a marathon, not a sprint; no one day, one glucose level, or one meal makes a difference in the long run. One of the main goals of diabetes management is to balance insulin doses, food, and activity to keep your blood sugar or glucose levels in the desired or target range, as much of the time as possible. To do that, first you must know what the glucose targets are and how glucose levels are measured. You must also understand what types of insulin are available and how they are combined for your insulin regimen. Finally, don’t forget to focus on your feelings, find support, and look to the future.
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Often when someone is first diagnosed, they are advised to keep their glucose levels between 100-200 mg/dL, to avoid hypoglycemia (low glucose) while they learn how to manage their diabetes. But after a few weeks or so, it may be time to bring glucose into the target range of 70-180 mg/dL, with pre-meal glucose between 70-130 mg/dL and post-meal glucose below 180 mg/dl. Before bed, healthcare professionals often recommend a glucose level above 100 mg/dL to help prevent hypoglycemia.
It is crucial that everyone diagnosed with type 1 diabetes learns how to perform fingerstick blood glucose measurements (referred to as BGs, fingersticks, self-monitoring of blood glucose, or SMBGs) and how to use a blood glucose meter (BGM). When you are first diagnosed, blood glucose tests should preferably be done before each meal, 2-3 hours after each meal, before bed, in the middle of the night, before and after exercise, and before driving. Here are a few tips for testing your blood glucose:
Before testing: Remember to follow the directions on your BGM. Be sure to set the date and time on your meter, have working and backup batteries, and keep all testing supplies away from extreme temperatures.
During testing: Make sure your hands are clean and dry. Put a new lancet in the lancing device and put the test strip in the meter. Poke the side (not the middle) of your finger with the lancing device so you maintain more feeling in your finger. Touch the blood droplet to the test strip allowing the BGM to read the glucose value.
After testing: Always throw away the lancet into a labeled “sharps container.” Write down the reading to keep a record of your blood sugar trends or review the stored data in the machine or on your computer; this will help you and your healthcare team recognize glucose patterns to more effectively manage your diabetes.
Continuous glucose monitoring devices (CGMs) are a more recent and convenient way to track glucose levels. A sensor that measures glucose (either through the same enzymatic reaction used by the BGM or through a fluorescent technique) is placed in the fatty tissue under the skin in the same place you give insulin shots, or where the insulin pump catheter is placed. Depending on which CGM is used, the sensor lasts either 7 days, 10 days, 14 days, or 90 days. These sensors measure glucose every five minutes and transmit the real-time glucose readings, a trend graph, and alerts to a smartphone or monitoring device. The data is stored in the monitoring device or in the data cloud so that you and your healthcare team can analyze it (if you give your healthcare professional permission to access it). CGM data can also be sent in real time to one or more care partners’ smartphones so they can help with your diabetes management. CGM is a powerful tool that many believe everyone with diabetes should be able to use, including those who are newly diagnosed; however, this technology is still not widely accessible or affordable.
The goal for using any of these devices is to assess the glucose value, and if it is not in your target range, to consider taking some action. If the glucose value is high, it might mean you should take a correction dose of insulin. If the glucose value is low, take oral glucose to bring it back up to the desired range (above 70 mg/dL). Ultimately, you’ll aim to have as many of the glucose measurements in the range of 70-180 mg/dL as possible. With a CGM – which gets up to 288 glucose measurements a day – the goal is to have 70% of glucose levels in the target range of 70-180 mg/dL (referred to as Time in Range, or TIR). Seventy percent of glucose values is equal to about 16 or 17 hours per day spent in range.
It is essential that people with type 1 diabetes take insulin. The insulin can be taken by injection with a pen or syringe, through an insulin pump, or through inhalation. For people with type 1 diabetes, insulin is usually taken multiple times a day. There are many different types of insulin and many different ways to take insulin. Similar to how insulin would work in the body if diabetes wasn’t present, a common way to take insulin is called “basal-bolus insulin.” Basal (long-acting) insulin is considered a “background insulin,” as it is designed for 1-2 daily injections, and it helps the body balance glucose between meals and overnight. Bolus (rapid-acting) insulin acts over a much shorter time period, around 3-4 hours, and should be taken before meals and to correct high glucose levels.
Basal-bolus insulin means you take one or two injections of a basal insulin per day, and you take bolus insulin every time you eat carbohydrates or need a correction dose of insulin for a high glucose level. Some healthcare professionals have people newly diagnosed with diabetes start on a “fixed” insulin regimen – the basal insulin is taken the same way, but you eat a set amount of carbohydrate at each meal with a set dosage of insulin. The advantage of the basal-bolus regimen is flexibility in what you eat and when. The advantage of the fixed regimen is you are usually given a specific meal plan with information on how to substitute one carbohydrate choice for another – you don’t have to be an expert in carbohydrate (“carb”) counting right away, but hopefully you will master it over time. Talk to your healthcare team about which insulin regimen might be best for you and your lifestyle.
To inject insulin, you will use either a pen or a syringe. Make sure to store your insulin in the refrigerator before opening, and at room temperature after opening. Here are some best practices for administering insulin injections:
Wash your hands and inspect the pen or syringe. Check that you have the right type of insulin, that it is not expired, and that there are no cracks or unusual qualities to the vial or in the liquid.
Label the date that you open your insulin.
Rotate the location of injection between the arms, abdomen, legs, hips, and butt, and try not to use the exact same spot in each location. Varying the site of injection will help keep scar tissue and excess fatty tissue from developing.
Insulin pumps are small machines (the size of a deck of cards or smaller) that deliver only rapid-acting insulin; no long-acting insulin is given. The pump delivers insulin directly under your skin without the need for multiple injections each day. There are many types of insulin pumps with various features. Some can be paired with a CGM for automated insulin delivery (AID, also called closed loop or artificial pancreas). Many people are started on insulin pumps weeks or months after diagnosis, but others choose to wait much longer, or to never use an insulin pump at all. If you are interested in an insulin pump, talk with your support network and your healthcare team to determine what type of insulin pump system might be best for you.
In the beginning, you should have frequent contact with your healthcare team to adjust your insulin doses. At first you might need to change your doses almost on a daily basis, but later on, dose adjustment is usually not done unless a pattern lasts at least three days.
Basal insulin dose adjustments: Basal doses are in large part determined by your morning glucose levels before breakfast (fasting glucose). The goal of basal insulin is to allow you to wake up with a glucose level between of 80-130 mg/dL, without hypoglycemia (low glucose) or hyperglycemia (high glucose) during the night. Basal insulin also helps maintain glucose levels between meals and if you skip a meal.
Bolus insulin dose adjustments:
Insulin to Carbohydrate Ratio (ICR): Your ICR is the specific amount of insulin you take for every gram of carbohydrate you eat. In other words, how many grams of glucose are covered by one unit of insulin. You may be told to take your meal insulin at least 15 minutes before you start eating. The American Diabetes Association recommends that your glucose level be less than 180 mg/dL for 1-2 hours after your meal. You should then be back to your premeal value after four hours, without hypoglycemia.
Correction bolus insulin: This is taken when the glucose level is higher than the target glucose level of 180 mg/dL. Correction insulin is used to manage high glucose levels before and 3-4 hours after meals, or when hyperglycemia develops during the day or night. For most people, a correction dose of insulin should not be taken for three hours after the last insulin injection. You also need to be careful about correction insulin before exercise or bedtime unless otherwise instructed by your healthcare team. A correction dose should bring your glucose level back to the target range within three hours, without dipping below 70 mg/dL.
Know that your insulin needs will likely change over time after you are first diagnosed with diabetes. Your basal amount, your insulin to carbohydrate ratio, and the amount you take for correction boluses will all change first with the “honeymoon” or remission phase of diabetes. After that they will change with growth, illness, weight change, aging, or a variety of other factors that can affect how sensitive your body is to insulin.
Often after diagnosis and the initiation of insulin therapy, people with type 1 diabetes enter a honeymoon period. This occurs because some insulin-producing cells in the pancreas begin to function again – and make insulin. This means that you’ll be able to decrease the basal and bolus doses of insulin you are taking. Occasionally, someone can get down to a very low dose of insulin each day. It is best not to stop taking insulin altogether, even if it means you only take a very small amount of basal insulin. Unfortunately, the honeymoon period does not last forever, and glucose levels begin to rise again, at which time insulin doses may need to be increased.
There has been a national effort to identify newly diagnosed individuals with type 1 diabetes and tell them about studies designed for people with new onset, including the National Institutes of Health TrialNet study. diaTribe writes about clinical trials here. Please look into research being done and discuss this with your healthcare team if you are interested in being part of the effort to better understand type 1 diabetes and ways to try to preserve insulin-producing cells.
Focus on how you are feeling – mentally and physically. Identify your challenges, find helpful resources, and get answers to your questions.
Put together your team of supporters – your healthcare team, your family and friends, and your co-workers.
Think of the overall mission – to successfully manage your diabetes and realize all your life dreams and goals. Master the day-to-day tasks, like how to check your glucose levels, take insulin, balance glucose levels, food, and activity, return to school or work, and stay healthy today and into the future. This is a marathon – give yourself time to adjust, learn, and thrive.
Reach out when you need help, and encourage your support team to do the same – there is a world of resources: doctors, nurses, nutritionists, mental health professionals, coaches, articles, books, videos, websites, associations, and organizations all waiting to help you. diaTribe is one of them.