What Did My Patients Ask When I Told Them They Had Type 1 Diabetes?

Are you newly diagnosed with type 1 diabetes? Dr. Francine Kaufman answers some of the most commonly asked questions

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Over the 40+ years I have been a pediatric endocrinologist, I have diagnosed thousands of children, teens, and young adults with type 1 diabetes. That first moment when I announce that someone or their child has diabetes is wrought first with disbelief and then a cascade of emotions. Then, there comes a deluge of questions.

So, what are the questions I have heard over all these years?

QUESTIONING THE DIAGNOSIS:

• Are you sure about the diagnosis? If someone is not on medications that elevate the blood glucose, and not acutely ill with a serious illness (including COVID-19), there is little other than diabetes that can cause a significant elevation of the glucose level. Combine this with the typical symptoms of diabetes occurring over the preceding days to weeks, and it becomes close to a certainty that the diagnosis is diabetes. Of course, I always add that the next hours to days will tell us for sure as we see the response to insulin therapy.

• Are you sure it is type 1 diabetes? Type 1 diabetes, rather than type 2 diabetes, is typically considered the likely diagnosis in very young children (after the first 6 months of life), and older children, teens, and young adults not affected by obesity – particularly in the setting of ketosis or diabetic ketoacidosis (DKA). Sometimes it is hard to differentiate type 1 from type 2, and sometimes it looks like there are elements of both. The diagnosis of type 1 diabetes is felt to be confirmed by the presence of islet-related antibodies in the blood that take a week or two to get back from the lab. This rules out other rarer forms of diabetes, as well, such as monogenic diabetes.

• Are you sure even though no one else in the family has type 1 diabetes? More often than not (maybe as high as 80% of the time), there are no other family members with type 1 diabetes.  

QUESTIONS ABOUT THE CAUSE:

• What caused diabetes? Type 1 diabetes is due to a combination of genes and the environment that trigger an autoimmune response that damages/destroys the insulin producing cells of the pancreas. There are a list of genes that we know are involved and they can be tested for – however, not everyone with those genes will get diabetes, and there are different combinations of the genes that cause variable risk of developing the disease. It seems there are things – perhaps a host of things - that are in our environment (viruses, food exposures, other environmental triggers) that someone must be exposed to at the right time to turn on the autoimmune response. Unfortunately, we still don’t fully understand how all these factors work together to cause diabetes. 

• What did we do wrong? No one did anything wrong to cause type 1 diabetes. Since we don’t know exactly the cascade of events that leads to type 1, we don’t know what anyone can do to avert getting diabetes. The same holds true for type 2 diabetes. That is also due to a complex interaction between genes and the environment – however, in type 2 there are lifestyle modifications that have been proven to help prevent and ameliorate the type 2 diabetes process.

• Could it have been prevented? After decades of research attempting to find a preventive for type 1 diabetes, we still don’t have one. We do have some promising regimens that seem to delay the onset of type 1 diabetes, but likely won’t completely prevent it for decades.  

QUESTIONS ABOUT WHAT TO DO NOW:   

• Do we have to take insulin? Insulin is imperative at the time of diagnosis and then forever if type 1 is established. Insulin should never be stopped. 

• How do I learn how to use insulin? You will learn how to administer insulin, how insulin works, the types of insulin, and how to adjust the dosages in a formal diabetes education program. Diabetes education is imperative. You need to be sure you are getting taught in a formal education program that covers all the necessary topics – causes of high and low glucose and how to treat them, diabetes medications including glucagon, how to balance activity, the nutrition plan, intercurrent illnesses, psychosocial issues, avoiding complications and more. In that program you must feel free to ask all of your questions and be sure you understand the answers. The diabetes education program is taught by diabetes educators: nurses, dieticians, doctors, social workers/psychologists under the direction of your health care provider – a physician, nurse practitioner, or physician’s assistant trained in endocrinology.

• How can I stick myself or my child? You will quickly learn that needles for administering insulin or for checking glucose levels are your friends – these are absolutely required to survive and thrive. Your diabetes team will help you if you have needle phobia – appropriate techniques, using insulin pens, or considering a continuous glucose monitor (CGM) might help with the fear of using needles. An insulin pump can also play a big role for those afraid of needles. It offers a lot of other advantages, such as reducing over-bolusing of insulin, giving very small doses of insulin, adjusting basal rates – and if linked to a CGM and an algorithm, it now allows for automation of insulin delivery.

• What is a honeymoon? Most, but not all, have a honeymoon phase of diabetes starting a couple of weeks after diagnosis. The honeymoon phase (called the remission phase) means the pancreas is making more insulin and therefore less insulin is required by injection. The honeymoon can last weeks to months but when it is over, it is important to increase insulin doses to appropriately manage glucose levels. Do not stop insulin during the honeymoon.

• What do glucose numbers mean? The desired glucose levels are between 70-180 mg/dL and the goal is to have as many values in that range as possible. This is called the target range. Below 70 mg/dL is low and below 54 mg/dL is very (dangerously) low. Above 180 mg/dL is high and above 250 mg/dL is very (dangerously) high. Glucose levels are monitored by fingerstick blood glucose measurements or by monitoring with a CGM that assesses glucose levels under the skin (called the subcutaneous interstitial space). More and more diabetes teams are starting CGM devices early after diagnosis or right at diagnosis because they give much more information – glucose levels every five minutes, trend arrows as to which direction glucose levels are going, alarms for glucose levels at or trending to high or low ranges, data management systems – that better facilitates diabetes management and helps do a better job keeping people out of danger.

• How can we ever manage this?  You will learn to manage diabetes with the help of your diabetes management team. It takes time, commitment, and diligence – but it can be done. And remember, you aren’t alone – there is a huge diabetes community behind you: 1.6 million strong in the US alone.

QUESTIONING WHY THERE ISN’T A CURE:

• Why isn’t there a cure? The cure for diabetes is linked to the prevention of diabetes. There are very impressive groups of research scientists and physicians around the world working on this problem funded by the NIH, the JDRF, the ADA, and other international research institutions including EASD and the European Research Council. Meticulously understanding the diabetes process is required – but it is an extremely complex process that has yet to be cracked. But we are way down the road and getting closer every day.

QUESTIONS ABOUT THE FUTURE:

• What do I do now? Having type 1 diabetes does not stop you from being amazing, famous, or whoever you want to be. It does not stop you from realizing your dreams, traveling the world, doing the job you want. So, the future holds what you choose if you commit to understanding how to manage diabetes and then managing it every day. You are the pilot of your diabetes; the diabetes team is there to help be your copilot, so use them as needed.

• What happens down the road?  Shortly after diagnosis you will find out about all the advances and innovations that type 1 diabetes management holds – CGM, insulin pumps, closed loop devices, adjunctive therapies, and artificial intelligence. You will learn about diabetes advocacy and the diabetes community. So, you should be positive about what happens down the road. No doubt your life has changed, but you will find support and comfort in being part of a caring and giving community.

Although these are some of the common questions I have been asked over the years, you may have many more questions that you would like answered. Never be reluctant to ask your questions and to use the plethora of resources available in the diabetes community to get your answers  – such as diaTribe, for a start! They publish a weekly email and I’ve been on the diaTribe advisory board since 2006 – you will learn so much from diaTribe on food, exercise, insulin, technology, stress, sleep, and more! I also highly recommend Adam Brown’s book Bright Spots and Landmines, as well as the host of books published by the ADA.