I have the ultimate New Years resolution to make for 2017: let's not miss any more new cases of type 1 diabetes before they can get too far out of control.
I'm a member of a consortium of specialist physicians and health care organizations aiming to raise awareness of the signs and symptoms of type 1 diabetes and to get more doctors to screen for this.
New cases of type 1 diabetes are on the rise. This has been the case for as long as I can remember. As a pediatric endocrinologist, I've heard the detailed stories of what led up to my patient's formal diagnosis. In my professional experience I have found that the diagnosis is missed early on in at least one third of cases. This includes patients, their families, and many doctors.
In defense of my fellow physicians, making diagnostic errors is a burden we all must live with. I've certainly made my share of wrong diagnoses in all areas of my work. Any doctor who says they've never made a treatment error or missed a diagnosis is simply not telling the truth. Learning from diagnostic errors and changing one's approach and thinking is what defines a good doctor from a great one.
Sometimes the family or patient actually suspected they or their child had diabetes symptoms and signs, but the doctor chose not to investigate further. This led to a delay in diagnosis which resulted in the patient returning later in a poorer metabolic state, maybe even in diabetic ketoacidosis or coma.
Often, the early signs and symptoms of diabetes are not very specific. Doctors are trained to look for common conditions first. As common as diabetes is overall, new onset type 1 diabetes affects about 3-4 per persons out of 1,000. Most doctors' personal experience with diabetes comes from their contact with large numbers of patients with type 2 diabetes, which is far more common.
These patients tend to have a more gradual onset and there is often less of a sense of urgency to making a diagnosis. Still, even type 2 cases are frequently missed due to lack of consideration by the physician. And many type 1 patients are mistakenly diagnosed as type 2. At least they were discovered, but the way they get managed after that creates it's own set of problems.
There are several common presentations for type 1 diabetes in youngsters. A suspected case of stomach flu or a viral syndrome may be how a child or teen presents with type 1 diabetes. Ironically, this could also be the real problem and it simply precipitates a precarious metabolic balance which has been reached after 85-90% of the child's insulin producing cells (beta cells) have been lost or compromised by the type 1 diabetes process. The slightest stress or a minor infection is enough to push them 'over the edge'. The process causing the loss of the insulin producing cells is usually present for months to years before symptoms occur.
Similarly, a strep throat-like picture or suspected urinary tract infection can be a presenting history.
A rapid growth spurt might also be seen. The child's height increases as the weight falls. But it falls too much and the weight loss might be thought as an expected co-event. Weight loss of 5-10 pounds before diagnosis is common. There is a bimodal age of type 1 diabetes presentation: the toddler years (2-3 years of age) and at the time of adolescence (12-13 years). But people of any age can develop type 1 diabetes.
Sometimes the weight loss preceding a type 1 diabetes diagnosis can be dramatic but still go underappreciated. I recall a teen girl who embarked on a diet to lose weight before her high school prom. She lost 30 pounds in 4 weeks. Her mom, who chose to simultaneously diet with her, expressed amazement with this "easy" weight loss. Never once did either suspect type 1 diabetes. Two days after her prom, the girl was in the ICU in severe DKA. Looking back, it all makes sense. But as these symptoms unfold it's not the first thing most people think about. If there is already a family member with diabetes, these sorts of presentations are much more rare, since the signs and symptoms are recognized sooner and there are ample home BG meters available to use to perform a spot check.
I've seen many cases of diabetes discovered accidently when a lab test is ordered for symptoms of another concern. A urinalysis may reveal sugar when it was ordered as part of a work up for a suspected urinary tract infection associated with bedwetting or a heavy diaper. A blood chemistry panel test might reveal an abnormally high sugar level when ordered as part of a work up for unexplained weight loss, fatigue, or malaise.
The Texas Pediatric Society and other diabetes advocacy organizations are now working together to raise awareness of the signs and symptoms of type 1 diabetes.
I know many doctors who have missed a diabetes diagnosis. To a person, they all feel poorly about this. But one rationale I've heard expressed is that checking sugar levels in an emergency room setting is not considered "the standard of care" for many of the common presenting problems discussed above. This is an institutional rationale that many ER docs have used to perhaps minimize liability for failure to diagnose. This makes a point I feel should be part of the next step in reducing missed cases of new onset diabetes.
I believe the blood sugar level (collected with a point of care device) should be considered a patient "vital sign" like the temperature, blood pressure, pulse, height and weight. Given the high prevalence of this condition and number of patients with all forms of the disease who get missed, there is a real case to be made to "change the standard of care" of patients seen in acute care settings like walk-in, urgent care clinics, and emergency rooms.
Of course that will mean the vast majority of persons in these situations will be needlessly tested and charged. That adds discomfort, additional costs, and the risk of still missing or even improperly suspecting diabetes in someone who does not really have it. These would be the "costs" of screening everyone. It's why routine screening isn't done now for everyone walking into an acute care setting.
For now, encouraging patients and doctors to consider doing a BG check on anyone with the following situations is most reasonable:
bedwetting or heavy diaper
vision change and headaches
rapid weight loss
irritability and mood changes
fatigue and weakness
stomach pain, nausea and vomiting
fruity breath odor
rapid heavy breathing.
Even this list includes a large number of people to screen in any urgent care clinic or emergency room. And many non-diabetic people will be tested and found to be have normal BG levels. We will test many to find a few. But for those few, this could be profoundly important.
Making an early and proper type 1 diabetes diagnosis can save lives and reduce long term medical costs. It will take a group effort of the public, patients and physicians. Share this link and spread the word!