brittle diabetes | Test Guess and Go

My blog has been languishing in summer doldrums and it is time to check in or check out. Lest you think that the three subjects in the title are connected, they’re not—except kinda sorta.

Brittle Diabetes

Looking for information to update a health history document, I recently reviewed my medical record from a previous internist. I thought that his notes from my first visit were interesting. What jumped out was “Brittle DM” at the top of the page. A few weeks ago there was a Facebook discussion about the word “brittle’ as a descriptor of diabetes. Most people considered it to be an outdated and inaccurate term that should be trashed. I am a little more open-minded about the subject and believe that there is a small subset of people with Type 1 diabetes whose disease is much more difficult to manage than that of most of us. Diabetes Forecast had an article in 2014 that addressed the brittle diabetes debate and quoted a Brazilian endocrinologist who described brittle diabetes as “glucose fluctuation so severe that a person cannot have a normal life.”

I am not writing about brittle DM in order to start a terminology debate, but rather to illustrate that in the past many of us with Type 1 were labeled brittle and labile. My internist was not ignorant about diabetes in 2002 and other notes mention Type 1. He actually understood clearly that my diabetes was different than that of most of his other patients. As far as I know he had only one other Type 1 patient and he often asked about my technology, especially my CGM in later years, to learn more to help this other patient.

Other comments from this visit showed that I was still using NPH despite having previously been under the care of a renowned endocrinologist. The new doctor immediately transitioned me to Lantus which resulted in the biggest improvement ever in my diabetes care. No reputable doctor could read this chart note without thinking Type 1 diabetes as I had frozen shoulder, dealt with hypoglycemia, and took Synthroid for the common comorbidity of hypothyroidism.

So in the old days, I had brittle diabetes and lots of the baggage that goes along with it. In 2018 I have regular hard-to-manage pain-in-the-neck Type 1 diabetes and lots of the comorbidity baggage.

Hand Surgery

Many of you know that I had hand surgery in mid-August for the carpometacarpal thumb joint of my left hand. Arthritis and bone spurs had resulted in enough pain that it was time to get it fixed. My rheumatologist assured me that this is one of the most successful joint surgeries and I hope that is the case. I am recovering as expected and trying to curb my impatience at not being good-as-new yet. I am still wearing a brace and dutifully doing the assigned exercises 3 times a day. I am back to spinning classes for exercise because I can do it mostly one-handed. My body and soul miss yoga but know that I can’t put enough weight on the hand to participate safely. I am on the mend and have at least recovered enough to type two-handed. BTW arthritis in this joint is one of the many gifts that post-menopausal women receive more often than other people….

The Dog

In May I shared that 12-year old Abby the Black Lab was diagnosed with chronic bronchitis. Despite using an inhaler all summer, her breathing has gotten worse and it has been determined that she has laryngeal paralysis, or more specifically GOLPP. The only treatment at her stage of the disease is surgery and I always swore that I wouldn’t subject a 12-year old dog to surgery. But Abby is still active, happy, eating and drinking well and with the vet’s advice, we have determined that euthanasia isn’t the ‘right” choice at this time. She is having surgery next Tuesday with a specialist in “Lar Par” (vet lingo). I hope we have made the right choice because Abby has always been a much-loved and perfect dog. Abby used to write posts for Test Guess and Go and this is my favorite.

The Intertwined Relationship?

Exercise is a cornerstone of my diabetes management. Hand surgery, as well as foot arthritis, has limited my exercise this summer and I am unable to do things like mow the yard and walk the golf course. Although I am doing intense studio cycling classes, the rest of my day is fairly inactive. Abby is not allowed to go on walks until she has recovered from surgery and that is another unfortunate reduction in my activity level. Diabetes does not like that and I keep bumping up the insulin and periodically rage bolusing. It doesn’t help that I have a recently replaced insulin pump and wonder if I just need different settings than the old pump. Or whether it is this or that or who knows what. My diabetes may not be brittle, but it sure is hard to figure out sometimes. So yes, everything is related: diabetes, arthritis surgery, and the dog.

There 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 developed 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.