The Pain of Diabetes Misdiagnosis and Denial

Transcription from Video

Hi, this is Rebecca Dugas, the Diabetic Herbivore! I want to talk to you today about the pain, complications, and frustration of misdiagnosis, and how that led to my own diabetes denial.

Did you know there’s a type of diabetes that’s NOT Type 1 OR Type 2? Yeah, I didn’t either. And worse than that, neither did the doctor who diagnosed me with Type 2 in my mid-30s.

If he had known there was another type, known as Type 1.5, then I might not have been uncontrolled for so long. And yes, I do blame the doctor, in part, because that’s his job to know. And if he didn’t know much about diabetes, he should have referred me immediately to a specialist, specifically an endocrinologist. I may not have been able to afford one at that point, but I didn’t even know I needed one.

Instead, he tested my blood sugars and my A1C and proclaimed me to have Type 2 diabetes. He told me to lose weight, stop drinking soda, and take Metformin. That’s it.

I started researching on my own about how to change my diet and I talked to my father, who’d been successfully managing his diabetes for years with diet, exercise, and oral medications.

I reduced my carb intake so radically that I lost 20 pounds in the first few weeks. My blood sugars were still high.

I did more yoga (my preferred form of exercise) and got trained to give Thai yoga bodywork sessions (which are an excellent workout for the practitioner). My blood sugars were still high.

I took Metformin, gradually ramping up to 2,000 milligrams a day (the maximum dose). I dealt with the awful diarrhea that plague so many who are on this medication. My blood sugars were still high.

I got frustrated, exasperated, angry, scared…and finally apathetic. Nothing seemed to work.

I started spinning a tale for myself about how maybe my body had actually adapted to the high sugars. I didn’t feel sick, after all. I didn’t have toes dropping off, or wounds that refused to heal, or any other crazy complications happening. So, maybe I was actually okay, and it was just the Western doctors in league with the system who were trying to convince me to continue spending money on them and their drugs.

I stopped taking the Metformin. I didn’t notice a big difference in my levels. Eventually, I stopped testing my blood sugar altogether. Nothing seemed to make a difference, so why bother.

A few years later, I realized I needed to get back to the doctor. I had completed my masters degree in Marriage & Family Therapy and was finally making enough to start considering going to a doctor again. I realized I couldn’t fool myself any longer if I wanted to stay in integrity with what I was teaching my clients. By this time, I had dropped more weight, and was now down to 115 pounds, which is supposedly my medically ideal weight. I was still testing high.

So I found a sliding scale doctor who agreed to see me for a reduced price. I walked in and tested at 500. The nurses and the doctor were quite upset by these numbers and wanted to send me to the ER right away. They were convinced I was about to drop into a diabetic coma any moment. This was scary, but there was no way I could afford an ER visit and told them so.

As an alternative, they asked if they could administer some insulin to me. I agreed, but then it took them another agonizingly long time (about an hour) to fetch the insulin. My stress and anxiety kept increasing during this time of sitting alone with my thoughts about this disease. By the time they came back and tested my sugars again, I’d gone up another 100 points. They gave me just 10 units of insulin (a very low dose, for those who are unfamiliar with it). My blood sugar levels dropped 200 points in about 45 minutes. I went home that day with a prescription for insulin. Finally, I had found something that worked. For the first time in many years, my blood sugar levels reached “normal” levels.

I started researching my condition some more. I discovered that perhaps I wasn’t a Type 2 diabetic at all. Type 2 runs heavily in both sides of my family and so that’s what we all assumed I had developed (including that first doctor). But I discovered there’s this in-between type, called Type 1.5, which seemed to fit my symptoms better. Type 1.5 is also sometimes called LADA, which stands for Latent Autoimmune Diabetes in Adults.

Type 2 diabetes is characterized by a resistance to insulin. Your body makes enough but doesn’t utilize it properly, so it isn’t able to transport sugar out of your bloodstream and into the cells. Therefore your blood sugar levels remain high.

In Type 1, which is an autoimmune disease, your insulin producing cells have been killed off and your body doesn’t produce its own insulin at all.

There’s a test you can do to measure the levels of insulin your body produces. When they measured my C-peptide levels, it revealed that my pancreas was producing very little insulin, and I did not test positive for the autoimmune antibodies. So…not technically a Type 1. But I was on a very lose dose of injectable insulin. I was quite responsive to insulin therapy, so not resistant and therefore, not technically a Type 2. Therefore, Type 1.5 was born to explain people like me.

However, there is also an argument to drop the in-between diagnostic terminology, since ultimately, people who have been classed as Type 1.5 much more closely resemble people in the early to middle stages of Type 1 development. Diabetes Daily recently published an excellent article describing the stages of Type 1 diabetes, along with an explanation of why adult onset of Type 1 is often misdiagnosed as Type 2. I’ll include a link to that article below. Surprisingly, this article also claims that sometimes Type 1s don’t test positive for antibodies, so there’s that.

Look, I don’t promote an indulgence in diabetes denial, but I can certainly understand how one can go down that path. It happened to me. And unfortunately, I’m now paying the price for that denial and for that doctor’s misdiagnosis early on.

I suffer from neuropathy in my legs and feet, but worse than that, I have macular edema from high blood sugars. It’s a similar condition to age-related macular degeneration and is treated the same way. I have to have medicine injected into each eyeball every few weeks to keep the swelling down. I have already experienced some loss of vision, but since getting the condition under control, the vision loss has slowed way down. I am thankful I don’t have any of the other more serious complications (such as kidney, liver, or heart problems), and I hope to avoid those in the future, too.

Doctors don’t know everything, don’t test for everything, and we are all different. If your prescribed treatment isn’t working, don’t give up like I did. Demand answers. Demand time with the doctor. Demand their attention. And if they won’t give you that time, attention, and respect, then it’s time to find one who will. You are your own best advocate and you are the expert on your body.

And with that, I invite you to share your diagnosis story with me. Any other Type 1.5s out there? Anyone else dealt with misdiagnosis? Have you experienced diabetes denial, no matter the type? I’d love to hear from you.

Please click the link below to sign up for my mailing list and be sure to check out my blog, and connect with me on social media, too!

This is Rebecca Dugas, the Diabetic Herbivore. Have a great day!

Here are the links I mention during the video:

Diabetes Daily article, “The 3 Stages of Diabetes Type 1 Development

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© Rebecca Dugas 2018 All Rights Reserved

Written by Rebecca Dugas

I am the original Diabetic Herbivore. I created this site to help others who live with diabetes and have chosen a plant-based diet to find recipes, resources, education, and support. The information here will also be helpful to anyone who chooses to eat more low carb and/or more vegetables. I believe we all should be able to feel full and satisfied no matter what food choices we make, or for whatever reason we make them.


2 thoughts on “The Pain of Diabetes Misdiagnosis and Denial

  1. Very informative. I too believe we are our best advocate and need to do research on our own instead of relying only on a doctor. As you said, they can’t know everything.

    1. Exactly! Doctors are experts on diseases and disorders, not on how those things manifest in our own unique bodies. We have to work in cooperation with them, not just passively accept whatever they say, just because they’re doctors. They’re not gods. Thanks for reading and commenting!! 🙂

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