It’s Time to Talk About Complications: Your Conversation Guide

The idea of diabetes complications can be scary. But when we start talking about them, learning how to prevent them and making a plan for the possibility of them, we can prevent or minimize the suffering that can come with them. And the more we discuss diabetes complications, the easier it will become.

It is crucial to start the conversation with your doctor to help you prevent and manage potential diabetes complications as much as possible. This guide will show you how.

Why does diabetes cause complications?

Diabetes is the constant juggling act of high and low blood sugars. When blood sugars are consistently high over many years, it can damage one’s nerves and blood vessels. This can lead to complications such as heart disease, kidney disease, neuropathy and retinopathy. 

Here’s the tough part—sometimes, the likelihood of experiencing complications is due to individual genetics. Plus, the longer we live with diabetes, the longer the body is being impacted by blood glucose variability, i.e. blood sugar levels going up and down in wider-than-normal ranges. 

You may also experience short-term complications from diabetes, such as diabetic ketoacidosis (DKA), when too many ketones build up in the blood, resulting from a lack of insulin in the body. On the other hand, when you don’t have enough glucose in your bloodstream (hypoglycemia), your body and brain cannot function properly. If left untreated, low blood glucose could lead to seizures or death.

Talk to your doctor early and often about complications

This can be a difficult conversation to have, but as a person living with diabetes, you deserve answers to all your questions about complications! 

Everyone’s diabetes is different, and it is important to get clarity on any issues you’re experiencing, as well as answers to questions you may have about complications. Your doctor can help you navigate prevention and management, even years before you have any symptoms of a complication—and they can help prepare you for what to do if you start to experience them. 

When your doctor asks if you have any questions, this is the perfect time to mention your concerns around complications. This is especially important if you’re experiencing any new or concerning symptoms, even if you’re not sure they’re related to your diabetes. 

Talking with your doctor about both short- and long-term complications is important. 

Short-term complications:

• Low blood sugars 
• High blood sugars
• Diabetic ketoacidosis (DKA) 

Conversations around these complications may include more short-term problem-solving, such as preventing lows during exercise or how to safely increase your insulin doses to prevent high blood sugar levels when you enjoy your favorite dessert. .

Some questions to ask your doctor may include:

• What are the best foods to eat before exercising to prevent a low?
• What blood glucose level should I aim for before, during and after exercise? 
• How far in advance should I dose insulin before eating, to prevent high blood sugar?
• What is a healthy blood glucose level during sleep?
• I’m not getting enough insulin from the pharmacy to keep my blood sugars in range. Can we change my prescription? 
• May I have a backup prescription for insulin pens or extra vials of insulin so I don’t run out? 
• I struggle with high blood sugar levels during (this time of day), can we take a look at my insulin doses to correct this moving forward?
• Are there other tools or technology that would be helpful for me to keep my glucose in range?
• Are there other tools or technology that would be helpful to catch my low blood sugars?
• May I have a prescription for glucagon to treat severe lows?

Long-term complications

High blood glucose levels or high ranges of glucose level variability over many years can damage major organ systems, leading to the following long-term diabetes complications:

• Heart disease and heart attack
• Stroke
• Nerve damage (neuropathy)
• Lower leg amputations
• Retinopathy and vision loss
• Kidney disease  
• Premature death 

Conversations framed around long-term diabetes complications can be based on focused planning for the future. 

Some questions to ask your doctor may include:

• What complications should I be most concerned about, given my age, gender, years with diabetes, etc.?
• What part of my current diabetes management needs tweaking to best protect me from future complications? 
• Given my current A1c and/or time-in-range (TIR), what blood glucose ranges should I aim for over the next three to six months to start to get my blood glucose levels healthier?
• How often should I exercise to protect my heart? 
• What types of exercise are best for people with diabetes to do?
• (If you smoke) What are some strategies that can help me quit smoking?
• Is drinking alcohol okay?
• Are there specific socks or shoes that you recommend?
• Is this blister/callus/scab/wound healing properly?
• How often should I have my eyes checked?
• Are there any medications I could use to protect my body from long term complications? 

Alert your doctor immediately if you have a pressing concern

Always bring up any new symptoms you’re experiencing, even if you’re not sure if they’re related to your diabetes, including changes to vision, consistent tingling, pain or loss of feeling in your feet or toes, heart palpitations, or excessive fatigue—or if you’re having trouble sleeping.

Start with these questions:

• Could this (symptom I’m experiencing) be related to my diabetes? Is it normal?
• I’m experiencing (this symptom of a diabetes complication). What immediate and short-term next steps do I need to take so it doesn’t get worse?

Don’t leave your appointments with questions unanswered, and make sure you know how to easily contact your provider between appointments (via a patient portal or phone number) to keep them up-to-date on any new or concerning health issues you may experience.

If you’re experiencing a major life change, let your doctor know

Your doctor can help you prepare for a possible pregnancy, major move, career change, menopause and more. 

The more you let your doctor in on the goings-on of your life, the more they can help you navigate those changes. Some diabetes complications can be made worse by life changes (pregnancy can worsen diabetic retinopathy), so you and your doctor must be on the same team to make a plan of action for any changes life brings! 

You are not alone

There is no such thing as being “alarmist” when you live with a chronic condition like diabetes. It is always better to bring up something that turns out to be no big deal, than to stay quiet about something that can be managed with help.

Complications are more common (and more manageable!) than you may think: Between 60-70% of people with diabetes have damage to their nervous systems, and nearly one in three people with diabetes over 40 years old lack at least some sensation in their toes or feet. 

Many people with diabetes also experience problems with their kidneys and hearts, yet continue to live full lives because they caught issues early and received treatment.

Seek the support of family and friends 

Whether you connect with your family and friends, people living with diabetes online, or find an in-person support group, being in community with those who truly understand what you’re going through is key to feeling less alone. 

They can help you navigate the changes that life with diabetes brings (and its potential complications) with grace and ease. 

This content was made possible by Lexicon, an active partner of Beyond Type 1. Beyond Type 1 maintains editorial control over its content.