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I have an insulin allergy, which makes managing my type 1 diabetes extremely difficult

Lauren Crosby Medlicott   

I have an insulin allergy, which makes managing my type 1 diabetes extremely difficult
  • Kate Lecker is a 43-year-old regional business director for a pharmaceutical company.
  • She has been using insulin for 40 years to treat her type 1 diabetes.

This as-told-to essay is based on a conversation with Kate Lecker about her four months of dealing with an insulin allergy. It has been edited for length and clarity.

I've been using insulin for 40 years and have never once had a reaction. For 25 years, I used an insulin pump that had always worked well for me. It gives little drips of insulin 24 hours a day, taking the place of the pancreas. While using it, everything was great with my diabetes.

Then, four months ago, I noticed I was becoming resistant to insulin. My body wasn't responding to the insulin the way it always had. If I saw my blood sugar was high, I would give a correction dose, but my blood sugar wouldn't come down.

My doctor tried different insulins

I communicated with my endocrinologist about what was going on, joking with him that my body was becoming immune to insulin. He told me that if that were happening, I'd be in the hospital.

He gave me different types of insulin to try for four weeks, but my blood sugars weren't responding. I tried to manage with lifestyle choices like a keto diet and increased exercise, but nothing was working. As a result, I didn't feel well and was often tired, thirsty, and nauseous.

Welts starts to develop all over my body. They were excruciatingly painful. I took Advil and Benadryl and would put on ice on them.

I was quickly getting frustrated and angry that diabetes was becoming such a large part of my life. I'd worked so hard to make sure diabetes wasn't the first thing someone knew about me. Suddenly, it was dictating how I was living.

I had my insulin pump removed

The next step was to take me off the pump to see if I was allergic to the pump device itself. At the start of July, about two months after I started having symptoms, my doctor changed me from the pump to injections to see if it would make a difference.

I was on vacation at the time, and I injected the insulin into my arm, excited that this could be the solution. I went to eat dinner, and by the time I was finished, my arm swelled up. I was becoming afraid to inject insulin at all; that's when I got very scared.

I called my doctor, and he said I needed to go to the hospital. He told me not to eat any carbohydrates and get to Johns Hopkins Hospital — that he had tried everything he could think of. This man, who I've always held in such regard as the smartest man I knew, was telling me he didn't know how he could help me anymore.

I was in the hospital for 43 days

I went to Johns Hopkins' emergency room and waited for four hours to be seen. I texted my doctor to say I had no insulin in my system and was going to get very sick soon if I wasn't seen. He called and got in touch with someone in the ER, and I was admitted.

I was in the hospital for 43 days. It was the worst thing I've ever experienced. My workplace was great and allowed me to work while I was in the hospital. I planned a routine that I tried to stick to every day to keep myself busy.

Soon after I arrived, I was put on IV insulin, which I didn't have any reaction to. They tried all the normal procedures they had used before with other patients but everything failed.

It was and continues to be isolating to have such a rare reaction to insulin and to be told so many times by professionals that they have never treated anything like it.

I'm taking drugs to suppress my immune system

Santiago Alvarez Arango, an allergist at Johns Hopkins, said he wanted to try a process that hasn't been FDA-approved to be used for insulin allergies.

It was invasive. I had a big IV in my neck to clean my blood of antibodies. I went through five of those sessions, each two days apart. The idea was that by getting rid of the antibodies, my body should stop attacking the insulin.

I was then given a couple of medicines to decrease my immune system so that I wouldn't make more antibodies.

Finally, he started me on insulin injections. I started with tiny amounts and didn't have an allergic reaction. I begged to go back home after three days of no reactions, and the doctors agreed.

I came home on August 23. I'm continuing to take medicine to suppress my immune system, along with taking 10 to 20 injections of insulin each day.

Though I am grateful to be home, the whole process has been such an adjustment. I'm just trying to get used to my new life. I don't know what is going to happen in the future, and I'm afraid I could have a reaction any day.

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