An Endocrinologist’s Frustration with Insulin Therapy

An Endocrinologist’s Frustration with Insulin Therapy

Published on May 27th, 2014 | by Claresa Levetan MD, FACE

In my practice recently I saw a very bright and talented woman about my age with Type 1 diabetes. She told me how, years ago, she had been accepted to medical school and elected not to go because she knew that, with the intensity of the studying and crazy schedule of hospital rotations, she would not be able to manage her glucose levels properly.

I was so saddened to hear this, for I know so many physicians with Type 1 diabetes, and know the value their perspective brings to endocrinology. However, she was content with her decision, and proud that she has kept her A1Cs in the 6.0 – 6.9 range over the past 30 years with few complications. For her, the sacrifice, including many, many episodes of hypoglycemia, has been well worth it.

For others, despite their greatest efforts, well-controlled diabetes isn’t yet a possibility. More recently, I spoke to a woman in tears about her 13 year-old-son, who just can’t get his glucose levels in a reasonable range. He is an avid sportsman who plays baseball and hockey. There is no rhyme nor reason to his glucose levels, and he has a great deal of lipohypertrophy, which is a thickening underneath the skin that makes absorption of injected insulin difficult and irregular. Pump and sensor have not been the answer for this patient. We’re considering starting him on Symlin, which is a drug that can help with wide glucose swings and reduce the need for insulin before meals, but it’s also an injectable, which means it may not help much. I did my best to reassure this mom that she was not alone in her frustration. Even when everyone is doing everything right, sometimes diabetes control is impossible.

I recently had the opportunity to visit with Dr. Steven Russell, whose team is developing what is known as the bionic pancreas. The bionic pancreas requires patients wear two insulin pumps, one containing insulin and the other containing glucagon, a well as a glucose sensor. A brilliant computerized algorithm hooked to an iPhone is used to pump both insulin and glucagon based on each glucose reading.

Dr. Russell is acutely aware of the limits to current diabetes therapy. He shared with me a typical teenager’s glucose readings at the Joslin Diabetes Camp, which is one of the best diabetes camps in the country. It’s a place where everyone there knows how to manage Type 1 diabetes well. This teenager was on a pump and a sensor, yet his glucose levels consistently fluctuated from 40 to 400 back to 40, with the cycle repeating itself frequently. The average glucose on this patient was 197 mg/dl, corresponding to a predicted A1C of 8.5%.

Tears filled my eyes as I saw the above readings. So many of my patients and doctors feel helpless about this disease. The more years that pass, the more I learn each day that the treatments that we have today don’t come close to helping so many patients with Type 1 diabetes, regardless of how hard we try. In talks, I describe Type 1 diabetes with the metaphor of a roller coaster that drops suddenly off a cliff, and stories like the kind Dr. Russell shared show just how apt that metaphor is.

I praise all of the teams around the world who are working hard on new therapies for Type 1 diabetes. From each group, we gain new insight that we hope that we are translating into leaps forward. I am extremely aware of the many years of false hopes and promises to patients, and how angry people get when I used to mention the word, “cure,” so I don’t use it anymore. I made a commitment to one of my patients who has had Type 1 diabetes since the age of 2 that I would have him off of insulin by the time he is a grown-up. I am more confident than ever that I will be able to keep that promise.

During the past year since the International Summit on Insulin Independence, we are moving forward to get FDA approval for a new clinical trial combining the use of both an immune tolerance agent and a beta cell regeneration agent to treat Type 1 diabetes. This trial will answer a pivotal question on the potential for insulin independence among people with Type 1 diabetes. A new door may soon open if we prove successful, providing a new paradigm for insulin independence without insulin therapy. The type 1 roller coaster must end.

About the Author

Claresa Levetan, M.D., is a noted endocrinologist with expertise spanning diverse areas of diabetes. She has been internationally recognized for the translation of science and technology into improved health care options for patients with diabetes. She served as an associate editor of the journals Clinical Diabetes and Diabetes Forecast.

It was uplifting to read that there are Endo's out there who don't automatically believe it is the patient who is at fault, labeling them "non-compliant" (I hate that word, it implies a willful lack of interest and work on the part of the patient) who lack of interest and work on the part of the patient). But, she sees the weakness and inherent difficulties of insulin therapy.

The last comment, about immune system treatment is of special interest to me. I had heard where longtime people with type 1 (some with 40 years experience living with diabetes) experienced beta cell insulin production activity in trials dealing with the immune system side of diabetes.

Just one question, where does she practice?

I've always wondered why Type 1 is (as far as I know) the only autoimmune disease that is not treated with medications that try to calm down the autoimmune attack. Nice that there is research going on in this area.

First, I looked the Dr up, she's in Pennsylvania - Damn. Closely alphabetically to Oregon, but not geographically. Sometimes I think the reasons that cure research isn't very intense or newsworthy is that type 1 is a cash cow for many industries, there is no much mis- and dis-info about diabetes (of all types) and as I said on another post, we don't look "sick". I mean, I'm glad that I look healthy (and feel great most of the time) but I think it makes diabetes seem less serious, less of a challenge to live with - After all, "all we need to do is give up candy", Right?

I've done it again, climbed up on my soap box.

Thanks for posting this story. This doctor's empathy for what we T1Ds face every day is exemplary. I've never given thought about the doctors' frustration with diabetes, too.

I've made great gains in the last two years with low carbing and TAGging. While I know that my N=1 experiments do not necessarily generalize to all T1Ds, I would think that the medical profession would take a greater interest in what I do. Well, it's not as sexy as an artificial pancreas or smart insulin but it's available now, not ten years from now!