My Diabetes Misdiagnosis: Type 1, not Type 2

Six months ago I became very ill and was rushed to the emergency room. The hospital doctor diagnosed me with diabetic ketoacidosis (DKA) and Type 2 diabetes. Later my primary care physician confirmed that diagnosis. I spent the next few weeks researching the cause of Type 2 diabetes; I  read hundreds of testimonials of people who have reversed their symptoms by eating a strict diet and losing weight. I did everything I could to pursue that goal, and I lost 25 pounds in 2 months (In 5 months total, my BMI went from 24 to 18.5). One month later, I was back in the hospital with DKA. A few days later, I had a third DKA attack!

Libby in Hospital – May 2017

Still, my latest hospital doctor dismissed the idea that I could be a Type 1 diabetic. When I asked why, she said, “You’re definitely Type 2 because your oral medicine previously worked.” Fortunately, I had already done a lot of research on this topic, so I explained that it’s common for oral medication to work for a short while (during the “honeymoon” phase) in people with a late onset of Type 1 diabetes. I also said that C-Peptide along with GAD antibody tests can determine my type. She was defensive and dismissive.

I certainly made mistakes in my diabetic journey. However, after leaving the hospital, I realized that I was misdirecting all the blame to myself.  Actually, most of my “mistakes” were  based on lots of research and testimonials. I was unsuccessful primarily because I was likely misdiagnosed.

Last week I saw a brand new primary care physician, and I requested the Type 1 diabetes tests.  At first she said no, but I gave a passionate 10 minute speech about how important it is (you can imagine me doing that, right?) and she agreed.  I did the lab work on Tuesday, and my results came in just in time for my endocrinologist (diabetes specialist) appointment on Friday.

  • C-Peptide: 0.16 Ng/mL (normal is 0.8-3.85)
  • GAD Antibody: 188 IU/mL (normal is <5)

The results finally provided confirmation that I am a Type 1 diabetic.

What’s the difference between Type 1 vs. Type 2 Diabetes?

Even though both of these diseases contain the word “diabetes” and have a relationship to insulin, they are quite different from each other, and therefore require different treatments.

  • Type 1 diabetes = insulin-dependent (the pancreas makes NO insulin)
  • Type 2 diabetes = insulin-resistant (the pancreas makes insulin, but the organs don’t use it efficiently)

Type 1 diabetes is a chronic, life-long, irreversible disease that requires insulin injections every day. It used to be referred to as “Juvenile Diabetes,” but we now know that it can be triggered at any age. A late onset is sometimes referred to as Type 1.5, or Latent Autoimmune Diabetes in Adults (LADA).   It has also been referred to as “Double Diabetes” because patients often experience symptoms of both Type 1 and Type 2.

Type 2 diabetes is usually caused by unhealthy eating. It can be treated with oral medication alone, and it can even be reversed with a strict diet.

Diabetic Ketoacidosis (DKA) is a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. The condition develops when your body can’t produce enough insulin.  It can easily occur in a type 1 diabetic who is not receiving insulin.  There are rare instances where it has occurred in type 2 diabetics when they are very ill.

How do I feel about my misdiagnosis?

FRUSTRATED with the U.S. Medical industry.  In other countries, such as the UK, common practice is to give the c-peptide and GAD antibody tests to new diabetic patients, so their diagnosis is accurate from the beginning. In the US, common practice is to simply assume a newly diagnosed adult diabetic patient has Type 2.  Their assumptions almost killed me… multiple times.

ANGRY at the medical staff for dismissing my ideas. I shared my concerns with several doctors and nurses over the last several months and received no support.  The best healthcare I received was through my own research on the Internet.

RELIEVED to finally have answers. If I were a Type 2 diabetic, I should have seen great “reversal” results after losing my excess weight, but instead my diabetes worsened.  I blamed myself (See My Diabetes Mistakes) and became depressed and frustrated with myself.  That’s over!  Now I know that there’s nothing I did to cause this.  I can now focus on managing my disease rather than trying reverse a disease I didn’t even have.   

READY to learn as much as possible about managing Type 1 diabetes.  I’m excited about being healthy again!

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