Diagnosis or Death: The Missed Diagnosis of Type 1 Diabetes

Over the past few weeks, I have had the privilege of speaking at several diabetes conferences on the subject of  “The Missed Diagnosis of Type 1 Diabetes”. This is a heartbreaking topic, which needs to be addressed by health professionals, schools, parents and across main stream and social media outlets.

 Undiagnosed or missed diagnosed diabetes due to symptom unawareness is simply unacceptable. However, many times the signs of type 1 diabetes are confused with signs of the stomach flu, or with an average stomach virus.

Susan & Tom Karlya, Diabetes Dad, at the Kentucky Statewide Diabetes Symposium // November 2016

Why is this happening? What can we do to make sure that no more children, adolescents, or adults are diagnosed in the dangerous grips of DKA (Diabetic Ketoacidosis)?

Diabetic Ketoacidosis is an acute metabolic complication of diabetes and is characterized by high blood sugar, ketone production, and metabolic acidosis. The onset of DKA is typically accompanied by nausea, vomiting, and severe abdominal pain. Finally, an individual in DKA may have cerebral edema with the risk of suffering a coma, or in even worse scenarios, death can ensue.  With the rise of cases of type 1 diabetes globally, we are seeing an alarming increase in children and adults diagnosed in DKA due to symptom unawareness.

What gets me in my gut and really breaks my heart, is that if we can increase symptom awareness, we can prevent missed diagnosed diabetes. We can help to prevent all the horrible complications associated with a missed diagnosis. Truly, this is a life or death situation!

Missing the diabetes diagnosis is NOT a problem of technology. We have urine dip sticks and blood glucose monitors. We have manufactured insulin, Continuous Glucose Monitor sensors, insulin infusion pumps, and other technological advancements to help manage T1D once it’s diagnosed. I’m not implying it’s an easy condition to live with because nothing could be further from the truth! But, insulin = life if you have diabetes. Therefore, without insulin, life cannot and will not continue.  Missed diagnosed diabetes is not an option.

Symptoms of Diabetes:

Excessive thirst
Excessive urination
Weight loss
Blurry Vision
Fruity Breath

Symptoms of DKA:

Abdominal Pain
Labored breathing
Flushed, hot, dry skin

These symptoms need to be addressed early on with health care providers. The symptoms of nausea and vomiting ARE the symptoms of diabetes, and should NOT be confused with the stomach flu. Just like a throat culture is done for a differential diagnosis, a simple blood or urine test should be done to help determine a diagnosis of T1D.

Some Initiatives to Increase Diabetes Symptom Awareness

DPAC- Diabetes Patient Action Coalition 

T1D Exchange: Myglu.org  


A Child’s Cry for Change


Check Don’t Guess


PA Residents for Diabetes Legislative Reform 

Test 1 Drop – T1D Awareness

Reegan’s Rule


Poster Presented by Susan Weiner & Tom Karlya, AADE16

Kisses For Kycie
Please watch this heartbreaking and informative video shared by Kycie’s parents. Feel free to share it so together we can help prevent loss of life from missed diagnosed type 1 diabetes.

As a proud RDN and CDE, I encourage all of my colleagues to join in to spread symptom awareness.

C: Caring Enough to Do Something

D: Detecting Symptoms of Diabetes

E: Educating for Symptom Awareness

Let’s do this together. As my remarkable friend Tom Karlya, aka Diabetes Dadsays “Don’t Do Nothing”. If each of us does just one thing to increase symptom awareness, we can save lives.

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