Diabetes: When Arguing With Doctors Could Save Your Life

Patient Expert

I was 17 the first time I had to tell a doctor they were wrong. Very wrong.

We’re taught that doctors are never wrong. They should never be questioned. To question the expertise and knowledge of a doctor is considered disrespectful. They’ve spent years and thousands of dollars becoming exceptionally knowledgeable and qualified to tell you about your health.

But doctors make mistakes. Doctors don’t always know everything. Doctors sometimes even get confused. Doctors are human, too.

That’s why it’s extremely important to speak up when you know something isn’t right, or if you believe that their idea or treatment is actually going to put your life in danger.

Here are three times I’ve had to firmly speak up to doctors, and saved myself from life-threatening emergency situations:

At 17 years old, my first Diabetic ketoacidosis (DKA) experience: I woke up in DKA 15 years ago while spending the night at my best-friend’s house in high school. I’d spent part of the previous evening stringing Christmas lights, outside the movie theater where I worked, in 5-degree temperatures in New Hampshire. The extreme cold had made its way into my pockets where it destroyed the insulin in my pump. I had no idea, of course. When I woke up the next morning, I felt incredibly sick.

I thought I had the flu. But instead, I had severe ketones and puked 15 times between my friend’s house and trying to get better at home. I couldn’t keep any water down and my blood sugar was still well above 500 mg/dL, so we headed to the ER.

They immediately started IVs of saline and insulin.

“We’re going to give her 10 units of fast-acting now, and 10 units per hour for the next several hours,” said the resident on duty.

I gasped. I knew that was way too much insulin. It meant that within just three hours I would get 30 units of insulin.

Yes, I was in DKA but I was going to get a flood of saline with all of this insulin, too.

I tried to tell him it was too much, but he dismissed me, and said something like, “Just let us take care of you.”

It felt like he said, “You’re just a silly little girl. I know more than you do.”

When the resident left the room, I told the nurse, “30 units of insulin is twice as much insulin than I take in an entire day. That’s too much. I’ll need an IV of glucose in an hour if he gives me that much insulin.”

“It sounds like a lot to me, too, for someone your size,” she said with a furrowed brow. “I’ll talk to him.”

She came back within a few minutes.

“Okay, he’s going to lower it a little. 10 units now and 7 units per hour,” she said.

“That’s still too much. I’m going to need glucose,” I insisted.

She agreed with me and said we’d keep a very close eye on my blood sugar over the next hour. (Keep in mind, this was well before CGMs existed!)

Within one hour, my blood sugar was plummeting.

In came the glucose ― lots of it, as much as they could administer at one time.

No one knows their insulin needs better than you. Remember that!

If the nurse had not been on my side, monitoring my blood sugar very closely during that first hour, it could’ve been much worse.

At 19 years old, after jaw surgery: As a teenager, my bottom jaw grew just slightly too long, but enough to completely screw up my bite, my teeth alignment, and my overall facial profile. This silly growth defect required me to undergo an intense surgery, cutting both my top and bottom jaws, and slightly readjusting their position.

When I woke up from the 6-hour surgery, my head was the size of a watermelon, I was puking up all the blood I had swallowed, and my jaws and teeth were wired shut together.

My jaw surgeon was brilliant, but he was also undeniably an arrogant ass, with a very intimidating frown and a large, heavy stature. He treated me like I was a dumb teeny-bopper girl at every pre-surgery consult.

Despite being in tremendous pain and vomiting up blood, I knew it was time to take my Lantus insulin that evening. My parents had already gone back home because we lived about an hour away from where I’d had surgery, so I buzzed the nurse and explained: “I take my Lantus insulin at night,” I said, pointing to the clock while struggling to communicate through my banded-shut mouth.

“Oh,” she said, looking at her paperwork. “Okay, I’ll be right back.”

She returned 10 minutes later to tell me, “Dr. X has never heard of Lantus insulin. He doesn’t want you to take it.”

Excuse me?

I told the nurse that was unacceptable. And then I ranted, again through a banded-shut jaw.

“If he doesn’t let me take my Lantus insulin tonight, I’m going to be in DKA by tomorrow moring, and you’ll have a bigger problem on your hands. I don’t care if he doesn’t know what it is! He’s not a diabetes doctor!”

The fact that this wasn’t already clear as day was also disturbing because my actual

endocrinologist and I had already discussed in great deal my Lantus dose before and after surgery. It was written down somewhere, and the surgeon clearly hadn’t reviewed it.

The nurse left, presumably to call the surgeon again.

A little while later, she returned and said, “He said you can take it.”

Clearly, he’d done a little Googling. The next morning when he came to check on my jaw, I tried to explain what Lantus insulin is and he didn’t even acknowledge me. A real gem of a personality!

At 31 years old, before my second child was born: At 35 weeks pregnant with my second child, I suddenly started gaining a tremendous amount of fluid in my legs and feet. My A1C had been below 6 percent the entire pregnancy and I had zero swelling in my entire first pregnancy. And my blood pressure was well below normal ― nothing to indicate why this swelling was happening.

Over the course of the next two weeks, I gained 17 pounds of fluid in my legs and feet. Still no signs of pre-eclampsia even though I could barely walk, and there was not a single pair of shoes or sandals I could fit my feet into, even when buying them two sizes larger than my actual foot size.

By 36 weeks, the skin of my feet was so stretched out that it was bright red and hot as hell. I used a Benedryl spray to reduce the burning so I could fall asleep at night.

And then my body began to feel like it was just dragging. Trying to make it through the morning brought me to tears, and if I wasn’t crying, I was trying not cry. My body felt so limp and without any strength.

By 37 weeks, even the nurses would gasp when they saw my feet and my knees.

I knew something was wrong. I could feel it.

Trying to survive two more weeks ― for a scheduled induction at 39 weeks ― seemed impossible. (I’d had a c-section at 39 weeks in my prior pregnancy because after nearly a week of induction medication, my uterus refused to contract and go into labor.)

Each day when my husband got home, I would burst into tears. He could see something was severely wrong, too, but again, we couldn’t prove it to the doctors.

To make a long story short, one of the top OBs in my high-risk OBGYN office finally saw that this patient crying in front of him had been completely healthy and hadn’t “complained” up until this point. He heard me.

“I believe in individualized care,” he said. He convinced enough of his team to let me have a c-section at 38 weeks as long as baby’s lungs proved to be fully developed through an amniocentesis.

One doctor did acknowledge to me that I could very well have been in the early stages of pre-eclampsia, but again, my blood pressure was normal.

Baby Violet’s lungs passed the test easily. She was born later that day without any complications, gorgeous and adorable.

But a week later, less than 24 hours after being released from the hospital, I woke up from a nap with blood pouring from my body. By the time we got to the emergency room within 30 minutes of when the bleeding started, I had already lost almost four grams of blood ― the point at which you need a transfusion.

It was discovered that my uterus was seriously struggling to recover. It wasn’t contracting at all in order to begin the healing process it goes through postpartum. And it was full of grape-sized blood clots.

Can we say for sure that I would’ve ended up needing an emergency c-section if they hadn’t gotten Violet out at 38 weeks? No. But the failing of my uterus in its postpartum recovery process gave great insight to why I felt like my body was struggling so severely in the last few weeks. It had met its limit. It was under more stress than it could handle.

I consider myself a very healthy person with diabetes, but I have no problem admitting that my body has clear limits. My body is a “sick” body. The fact that I have type 1 diabetes, fibromyalgia, and celiac disease ― even if I manage those diseases as well as possible ― is a clear indicator that my body in general is not exactly “programmed” to function properly.

For that reason, I know I must speak up. I’ve lived in this body for a long time, managing its limitations for a long time. For those of us with chronic illnesses, we have a relationship with our body that generally “healthy” people simply do not.

Trust your instincts. And speak up.

See more helpful article:

Diabetes: 10 Things Your Doctor Won't Teach About Insulin

Choosing the Best Doctors for Your Diabetes Management

Should You Fire Your Doctor?