Thoughts on Brittle Diabetes

Sue May 2013_Head SquareThere was a recent blog post about brittle diabetes at Diabetes Mine in which the author says that for the most part, “brittle” is considered an outdated label.  He also states, “But some disagree, saying “brittle diabetes” refers not to everyday ups and downs, but rather to a rare but real condition in which the PWD has volatile blood sugar swings that are nearly impossible to control. It’s known as labile diabetes in clinical lingo and there are some in the patient D-community advocating to bring more awareness and recognition to this rare and severe form of type 1.”

In 1975 when my son was diagnosed at age 4 with what was then called Juvenile Diabetes, brittle diabetes was an often used term for hard-to-control diabetes. And let’s face it, in those days it was a given that Type 1 diabetes as we now call it was hard to manage on the best of days. With a once-a-day shot of NPH insulin and no method of blood sugar testing, my son’s control was a wild guess based on urine strip results over three months.  His pediatrician would look at the results and adjust the NPH dosage which would be the same every day until the next visit.

Fast forward to 1988 when at the age of 38 I was diagnosed with Type 2 diabetes. Several years later my diagnosis was changed to Type 1. From the start I had the advantage of test strips for testing my blood sugar. Several years later both my son and I learned to count carbs and give ourselves MDI (multiple daily injections). Now we both have insulin pumps and continuous glucose monitors which have greatly improved our ability to control our blood sugars.

One thing I have noticed through the years is the difference between my son’s and my level of control. He works a lot harder to manage his diabetes than I do. In the past he Man_Brittle_Finaldeveloped an extensive Excel spreadsheet where he recorded all of his food intake, exercise and insulin to share with his endocrinologist in the hope of achieving more stable blood glucose numbers. He has always had a difficult time with rapid blood sugar fluctuations and the addition of hypoglycemia unawareness compounds the problem. Yes he has the CGM, but with the 15 minute or so delay in the interstitial fluid catch-up, low blood sugars have caught him off guard many times. One time after he passed out from a hypoglycemic episode at work, he was admitted to a hospital for a week in an effort to get his blood sugars under control.

My diabetes experience has seemed to be much more level compared to his. In my 25 years of diabetes I have never experienced diabetic ketoacidosis (DKA) or even come close to it. In fact I believe that the highest blood sugar I’ve ever reached was at diagnosis and that was around 480. I never had the benefit of being tested for Type 1.5 or LADA (Latent Autoimmune Diabetes of Adults), but I suspect that is what I initially had.  At this point I consider myself simply a Type 1 diabetic.

Sue from Pennsylvania’s husband was diagnosed with Type 1 diabetes later in life and his doctor has told him that he has brittle diabetes.   Sue agrees with him.

Laddie’s thoughts on brittle diabetes are in part, “I think that because brittle has so many old-fashioned connotations that maybe doctors should start using another term for the “extreme” cases of Type 1.  In most of my years with diabetes and as recently as ten years ago, all of my doctors called everyone with Type 1 brittle to distinguish them from Type 2’s.  “Labile” was also a favorite term.”

I know that for the most part the medical establishment does not agree with the brittle diabetes label.  However, I strongly believe that there is a physiological reason for the differences in control between my son’s diabetes and mine. My final take is that diabetes is much harder to control for some people than others.

2 thoughts on “Thoughts on Brittle Diabetes

  1. Great, great blog. Marc’s doctor was the one who put the label “brittle” for Marc’s diabetes. Until then, I had never heard of brittle diabetes. His diabetes educator also uses the term “brittle”. It really is just semantics. Whatever you want to call it, it all boils down to uncontrollable diabetes.

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