In theory, diagnosing diabetes should be fairly simple. Have a fasting blood sugar over 127 mg/dL? Congratulations, you’re probably in the D-Club. Have a blood sugar reading over 200 mg/dL any time? Congratulations, you’re definitely a club member.
But not so fast! Just because you’ve been inducted into the club that no one voluntarily joins, that doesn’t mean the path forward is clear. Things just aren’t the same — or as easy to recognize — as they used to be.
Back in the olden days, we had two types of diabetes: adult-onset and juvenile-onset. One of them (supposedly) happened in old, fat people, and the other happened in skinny, little kids. That’s just how most diagnoses seemed to play out at the time.
Nowadays, those stereotypes have been tossed out the window and replaced with a scattering of any age being diagnosed with any type of diabetes. Almost 40-somethings showing up with type 1 (Hi, Amy and Wil!), 12-year-olds who present with type 2, and a whole host of 20 and 30-somethings stuck in the middle with this thing called LADA (Latent Autoimmune Diabetes in Adults).
Problem is, the medical establishment does not even agree on the definition of LADA. So what to do about diagnosing adults in particular who don’t fall neatly into any of the pre-defined categories?
Thankfully, a consensus appears to be developing in the medical community that it’s best to start defining LADA in terms of management, or looking at whether management is closer to type 1 or type 2 in deciding how to treat a patient. The takeaway in diagnosing diabetes is actually in the treatment.
LADA Who?
Let’s start with the term LADA. A lot of people see the word “latent” in LADA and they associate it with the word “late.” But that’s not entirely correct. Latent actually means “dormant,” among other things. You could think of LADA as being a dormant type 1 diabetes. It was already there, but only a little bit. It hadn’t fully developed into the frustrating, diabolical disease we know and love.
So, what does that mean?
Dr. Yehuda Handelsman
The President-Elect of the American Association of Clinical Endocrinologists (AACE), Dr. Yehuda Handelsman, explained it this way: “For me, LADA is a slow-progressing type 1 diabetes. However, patients might have a lot of features of type 2.”
Clear as mud, right?
“There’s never been a good strong definition for LADA or how diagnosis LADA,” Handelsman says. “Even for the name, there is a lot of controversy.
And that, My Friends, is the crux of this whole diagnosing diabetes debacle, recently covered in the Washington Post.
Dx Me, Please
For most people, and for most endocrinologists, diagnosing diabetes is going to be that fairly cut-and-dry stereotypical diagnosis. Mike and I were diagnosed at ages 5 and 8, respectively, and we were the classic type 1 cases with blood sugars at several hundred mg/dL. (Yup, it’s as fun as it sounds).
It’s a stark contrast to Elizabeth Lebedda, for example, a 23-year-old who was diagnosed with diabetes last year when she went to see a doctor for some back pain. Turns out it was a urinary track infection (UTI), so common in undiagnosed females with diabetes (FWDs).
“After testing my urine, the doctor found a sugar spill which she said often indicated diabetes,” Elizabeth says. “She declared me type 2 after running a blood test.”
Turns out the diagnosis was wrong. Well, the diabetes diagnosis was correct, but not necessarily the type or the treatment. Elizabeth’s blood sugars were still dangerously high a few weeks later, and after checking her blood sugar, she realized she needed to see a specialist. The new endocrinologist declared that Elizabeth has LADA. How does she know it’s LADA, and not type 1? It’s now a year later and she still only needs one shot of Lantus a day.
“I had never felt so relieved in my life,” Elizabeth says. “Relieved that I had an answer and that I knew I would be OK.”
Elizabeth’s situation illustrates a point that Dr. Irl Hirsch, a type 1 PWD himself and endocrinologist at the University of Washington, explained in the Washington Post article.
He says misdiagnosis frequently happens when patients see a general practitioner, like Elizabeth did. “It is not on their radar because they see so much diabetes and it is by far mostly type 2,” he says.
Elizabeth was lucky in getting a new diagnosis soon after her first, but that’s not always the case. Mike Lawson, one of our amazing contributing cartoonists and a new columnist at the ‘Mine, shared in a video that it took him nearly a year to get properly diagnosed and treated. And many other PWDs have shared similar stories.
Inertia & Blame…
“What happens, usually, is that doctors have what we call inertia,” the AACE’s Dr. Handelsman explains. “They don’t change. They start patients on metformin, and say, ‘Come back in six months.’ And the patient’s A1c goes up, so the doctor just says, ‘diet more and exercise and come back in another six months.’”
We can definitely see where this would be a problem. Instead of treating to goal (an A1c under 7%, as directed by the ADA), doctors are treating to a type of diabetes that may or may not even exist. Moving forward, patients and doctors need to keep in mind that diabetes can present itself in a variety of ways, but it can be difficult for doctors to tear themselves away from the idea that all newly diagnosed adults are type 2, Handelsman says.
Many doctors blame their patients for noncompliance (ouch!), while others insist on increasing medications that at one point worked but have begun failing. (We know, right?)
But how do you get that definite diagnosis and why aren’t more doctors right on the money, so to speak? I asked Dr. Handelsman why more doctors don’t test for the antibodies that can show up in people with type 1 diabetes because it’s an autoimmune disease? He said:
1) “They can be somewhat misleading.” Antibodies are not present in everyone with type 1 diabetes. Sometimes you have type 1 and you have antibodies, sometimes not. Sometimes you can have antibodies and still make insulin!
2) Many doctors, especially general practitioners, don’t know about the antibody test, so they won’t order it.
3) Surprise, surprise: cost. Insurance and managed care companies may not cover the cost of the tests, Handelsman said.
C-peptide, a byproduct the body produces when it makes insulin, is also not always a clear indicator. Some type 1s make more C-peptide than others, and some type 2s make less C-peptide than others.
Just Treat Me Right!
But as we mentioned, there is hope: AACE and other medical societies are working on encouraging a more proactive method of treating the newly diagnosed. “We are focusing on control, getting rid of inertia and accelerating management of patients who are not at goal,” Handelsman said. “If patients are not so sure about their current treatment, then they need to consult with another endocrinologist.” Now, 
there’s a recommendation…
At the American Association of Diabetes Educators (AADE) conference earlier this year, a workshop concluded that type 1 and LADA are distinctly different but no one could exactly define LADA. In fact, the medical professionals in the room came up with a variety of diabetes types, all somewhere in the middle of type 1 and type 2.
Honestly, I found the entire conversation fascinating and yet worrisome. Our medical profession really doesn’t know that much about LADA or what causes it, so it makes it difficult to know how best to treat it… and then it’s no surprise there are so many misdiagnosis stories out there.
Until some of these scientific uncertainties are cleared up and we can establish clear definitions, we need to be open for what works, not what fits a particular label.
“Seeing an endocrinologist” — any endocrinologist — may be more the issue than it would appear in the post. Many health insurance policies require specialist referrals, which general practitioners are hesitant to make, or are discouraged from making. Co-pays for specialists are often higher than for primary care doctors, making it harder to scrape up the money to get care. There can also be long waits if there are not enough endocrinologists in your area, or whose hours work with your schedule, or who have openings to see new (or even current) patients…
Let’s see, “a workshop concluded that type 1 and LADA are distinctly different?” If that is what the AADE is saying, we are truly in trouble. Type 1 autoimmune diabetes is defined as having positive antibodies, and LADA’s have positive antibodies. Both are clearly Type 1 diabetes as defined by WHO and the Expert Committee on the Diagnosis and Treatment of Diabetes Mellitus. It is statements like that from AADE that contribute to the problem of misdiagnosis. Sad and pathetic.
LADAs are different. We produce more insulin than Type 1s, but the amount often seems to vary, as does insulin resistance. We often require additional insulin, but usually much less than either Type 1s or Type 2s and we are more sensitive to even the slightest discrepancies. The honeymoon period can last years. I’ve been LADA for almost 9 years and still use relatively littel insulin, especially mid-day. And because we are adults, unlike a small child’s honeymoon period when insulin levels vary for a couple of years, we must be our own parents and figure out how to frequently change basal/bolus rates to compensate.
LADA is Type 1 diabetes. There is also a vast difference in the experience of onset of Type 1 diabetes in a baby versus a teenager, but it is all autoimmune diabetes. No one is saying that teenage onset is distinctly different than baby-years onset, so why say that adult-onset Type 1 is “distinctly different?” Same disease process, same genetics.
This is indeed a highly informative post from you where, crucial aspects related to right diagnosis have been aptly covered. As stated by you, it is always better that one does not rely on general physicians for the purpose of detecting diabetes. Anyone who reads this would surely become more aware of the varied facets of the ailment. It is clear that it is only subsequent to an extensive research that you have come out with this post. Well done!
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