Readers Share Their Missed Type 1 Diagnoses

Our story on a missed Type 1 diagnosis, “I Had Type 1 Diabetes and Didn’t Know It”, elicited a long list of comments from readers, many of whom wanted to share their own missed diagnoses. From the several dozen comments, we were able to piece together a non-scientific cross-section of what happens to people with Type 1 when their symptoms are overlooked:

Length May Vary
While a few lucky souls caught their diabetes quickly…

“I saw the symptoms and took my son to the doctor 3 days…after I noticed.”
-Eschelle W.*

…many described not getting the diagnosis for months or, even, years:

“A year…convinced myself I was thirsty and tired because of summer, exercising 6 days a week, and low iron. Went to the doc and they always thought I was pregnant when I brought up my symptoms. Went to an eye doctor when my vision went blurry and was told it wasn’t serious. Finally got to ER and was misdiagnosed with Type 2, but I was back a week later back. Doc finally gets it right – Type 1.”
-Angelica J.

Overlooking the Obvious
As Angelica J.’s comment suggests, many people got diagnosed with other things before their Type 1 diagnosis. Several were given the diagnosis of Type 2 diabetes. One person was misdiagnosed as bipolar. Some people were tested for exotic things before being diagnosed with Type 1:

“It took 4 months before I was diagnosed with Type 1 diabetes. All along I was misdiagnosed – I was told that I had amoeba and typhoid!!”
-Susan G.

Sometimes, lack of information about Type 1 presented a hurdle for parents who were trying to figure out the symptoms of their children:

“I watched my daughter drink and urinate frequently, but since I didn’t see any other symptoms, I didn’t think it was Type 1. I didn’t know you could develop it later in childhood. ‘If she were to have it, it would have happened as an infant,’ I thought. Then she excitedly told me she dropped 10 pounds and I just knew. Checked her at home (dad was Type 2), and her blood glucose was over 500 mg/dl. The doctor told us if we had waited another week, she would have been in bad shape.”
-Sue B.

The Long-Delayed Diagnosis
Sometimes, people faced skepticism, or even hostility, because of their poorly understood symptoms:

“I was applying for a teaching position in 1982 and had to do a urine test as part of a health checkup. The school district doctor accused me of having diabetes and trying to cover it up so I could get insurance. I went to my regular doctor and redid the test, but my blood sugar levels were normal. I was diagnosed 6 months later with Type 1.”
-Kim K.

“I went to the doctor’s four times with classic symptoms only to be turned away. At 23, I suppose I wasn’t a classic case…At the advice of a friend I went to the local pharmacy and had them test my blood sugar, and was promptly sent to the hospital”
-Zoe S.

Because of the delayed Type 1 diagnosis, many readers had dramatic trips to the hospital:

“I had symptoms for a few weeks. I lost a lot of weight, was extremely thirsty with no appetite, and my eyesight deteriorated badly. Then diabetic ketoacidosis hit and I was sick in bed for 3 days, getting weaker and weaker. On the fourth day, I didn’t wake up. My father didn’t want to wait for an ambulance so he drove me to hospital himself. The doctor later told me if I hadn’t been taken to the hospital that morning I would have died.”

-Adrienne E.

Sadly, these kinds of stories are all too common. Worse, sometimes those who endure a missed diagnosis don’t survive to tell their stories. Diabetes advocates are beginning to push for state health laws mandating better screening for Type 1 diabetes. Also, the ADA and JDRF recently advocated for a reclassification of Type 1 diabetes to incorporate earlier symptoms.

It is our hope that fewer of our readers have to go through months of uncertainty before receiving their diagnosis.

*Last names withheld for privacy concerns. Reader comments were edited somewhat for clarity.

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Craig Idlebrook is a past editor for Insulin Nation, Type 2 Nation, and Información Sobre Diabetes. He is now the community engagement and content manager for T1D Exchange.

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