Why is Type 1 Diabetes Not Being Diagnosed?

Diabetes Misdiagnosis

Type 1 diabetes (T1D) has no age discrimination and can occur at any time from infancy to elderhood. But, increasingly, with the resemblance to type 2 diabetes, several patients are being misdiagnosed and remaining untested for T1D. Instead, they are handed an incorrect type 2 diabetes (T2D) diagnosis from their practitioners, often just because they “look” the part. 

Having type 1 diabetes, I understand that the only proper medication for this autoimmune diabetes is a vile of insulin. Without an accurate diagnosis, many patients are now being prescribed oral medications for different illnesses and not getting the needed treatment for their condition. This leaves many with high blood glucose levels that are not being adequately treated. 

What is Type 1 Diabetes

Type 1 is an autoimmune diabetes when the body’s immune system attacks the pancreatic beta cells, causing hyperglycemia (high blood sugar). Moderating the glucose levels requires exponential insulin. T1D is a chronic disease that involves daily insulin injections and blood sugar monitoring. 

Other Types of Diabetes 

You may not be aware but there are over seven types of diabetes. The most common are as follows:

Type 2 Diabetes

Type 2 diabetes occurs when the body’s cells become resistant to insulin, causing blood sugar levels to rise. In addition to diet and exercise, oral medication, additional insulin, and certain GLP-1 drugs may sometimes be used for treatment. 

Latent Autoimmune Diabetes

Latent Autoimmune Diabetes in Adults (LADA), sometimes called type 1.5, is a type of adult-onset diabetes that occurs in adults over the age of 30. Similar to type 1 and type 2 diabetes, this adult onset type may not require insulin for the first six months. 

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Gestational Diabetes

Gestational diabetes mellitus (GDM) is diagnosed during pregnancy in women who don’t have diabetes. Like T2D, the body can’t produce enough insulin, which allows blood sugar to enter cells for energy, resulting in insulin resistance and high blood sugar levels.

Type 1 Cases Keep Climbing

So, what is the confusion between type 1 and type 2 when physicians diagnose? Why are they not ordering the correct tests for a possible disease and instead making assumptions (and diagnoses) based on appearance and age? Like T2D, the increase in T1D diagnosis keeps climbing, and the number of those diagnosed with both diseases continues to rise. 

Type 1 diabetes classic symptoms: 

• Rapid weight loss
• Excessive thirst
• Increased appetite
• Increased urination
• Blurry vision 
• Lethargy, exhaustion
• Dry skin and eyes
• Nausea 

A problem in correct diagnosis seems to be that, for some reason, anti-GAD antibody and C-peptide testing are under-utilized in the differential diagnosis of type 1 versus type 2 diabetes in adults. It appears that type 2 diabetes is just “assumed” with patients who are at an older age and/or overweight. A confusing reason for not receiving the correct diagnosis is said to be that type 1 diabetics are lean or average weight, so they don’t fit the assumed criteria. 

Misdiagnosis Has Serious Consequences

Unfortunately, the misdiagnosis has serious medical consequences for many, such as diabetic ketoacidosis (DKA) caused by high blood sugars that can be deadly for those suffering from T1D. 

What is Diabetic Ketoacidosis (DKA)? 

Diabetic ketoacidosis is a life-threatening complication that frequently occurs at the diagnosis of type 1 diabetes and arises more commonly when a patient is misdiagnosed. DKA is the leading cause of death in children with type 1 diabetes and is associated with even worse long-term outcomes. One study from the National Institutes of Health found that 25% of all participants were incorrectly diagnosed and that misdiagnosis was associated with an 18% increased risk for DKA compared to those correctly diagnosed. Adult healthcare providers should consider type 1 diabetes when diagnosing type 2 diabetes, and pediatric providers should rule out type 1 diabetes when a patient reports nonspecific viral symptoms.

Symptoms of DKA: 

The symptoms of DKA are similar to the signs of type 1 diabetes: 

• Excessive thirst
• Increased urination
• Deep breathing
• Dry skin and mouth
• Flushed face
• Fruity-smelling breath and urine
• Headache
• Muscle stiffness
• Lethargy, tiredness
• Stomach pains, nausea, vomiting

Many patients waiting for a correct diagnosis suffer from various health consequences due to the lack of proper attention to their health issues from their primary care doctor. 

Hyperglycemia (High Blood Sugar)

When the body has too much glucose (sugar) in the blood, the result is hyperglycemia (high blood sugar), which can affect people of any age. Again, the symptoms are almost identical to DKA and include excessive thirst and hunger, frequent urination, headaches, brain fog, and blurred vision. 

Risks Associated with Undiagnosed T1D

In addition to DKA, long-term effects for those suffering from hyperglycemia (high blood sugar) may include but are not limited to the following:

• Blurry vision
• Nerve damage
• Cardiovascular disease
• Feet problems
• Bone and joint problems

Antibody Testing for T1D

Diabetes is a chronic condition that affects millions of people around the world, and it’s vitally important to ensure that you have a proper diabetes test done so you can receive the correct treatment. Your doctor must ensure that the correct testing is completed so you can receive an accurate diagnosis and start feeling better, along with proper medication as needed. The antibody test for type 1 diabetes checks for antibodies that attack the insulin-producing cells. This antibody test draws blood from a vein in your arm or hand, and often, the antibodies appear before the clinical signs and symptoms of T1D. 

Other Diabetes Tests

Your health care team may administer other blood tests to check for type 1 diabetes, including an oral glucose tolerance test, fasting plasma glucose test, insulin assay test, or C-peptide test. 

T1D Exchange

Another resource is the T1D Exchange Online Community. T1D Exchange is a place to connect with other T1Ds who face similar challenges. The website offers potential research studies and the T1D Exchange Clinic Registry, which collects clinical laboratory data on individuals with T1D to help identify issues and track the disease's progress over time. 

Importance of Proper Testing

The symptoms of T1D often appear more slowly in adults than in children, so it can sometimes be overlooked. It's okay to question healthcare professionals and request a blood test to determine if you need insulin treatment.  Always advocate for the best diabetes care and proper, thorough testing for yourself and others. With the right treatment and daily management, individuals with type 1 diabetes can thrive and live long, robust lives.