Happy Saturday, and welcome back to our weekly advice column, Ask D'Mine, hosted by veteran type 1, diabetes author and educator Wil Dubois.Ask-DMine_button

This week, Wil answers a question about the tricky world of diabetes diagnosis, when it's not quite clear whether a PWD is a type 1 or type 2. Once again, you may be surprised by what you read!

{Got your own questions? Email us at AskDMine@diabetesmine.com}

 

Laura, type 1, from Massachusetts, writes: Hello Wil. I am a 54-year-old woman who was diagnosed my by family doctor as a type 2 diabetic in 2011. At my first visit with an endocrinologist I was diagnosed as a type 1 diabetic. It was confirmed as well by a second endocrinologist months later. They both said I had antibodies that were attacking my pancreas. I moved and went to a new endocrinologist in September of 2013. She too confirmed that I was a type 1. She told me I needed to go on insulin soon because my blood sugars were in the low 200's. I did not do so at the time. I was trying to find another doctor. I ended up going back to her because my blood sugars were getting even higher. This time she told me that I am a type 2 and that I misunderstood her during my last visit. I was not comfortable with her diagnosis. I asked her why I am now a type 2. She said because you can change back and forth. Is this true?

Wil@Ask D'Mine answers: Diabetes isn't like a sex change: You're stuck with what you've got. There's no switching sides. Despite common gear, therapy, and complications, the two diseases couldn't be more different in what causes them.

News nuggets from around the diabetes community

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Review: Type 1 is an autoimmune disease. The body's immune system freaks out, and in a grisly case of friendly fire, mistakes the insulin-producing beta cells in the pancreas for marauding pathogens, and wipes them out. End result: Zero insulin production and complete dependence on insulin therapy to survive. Type 2 is a disease of insulin resistance. The body makes copious amounts of insulin, but like hive collapse disorder where the queen bee is dead and the worker bees don't know what to do, the body's cells don't seem to know how to use the insulin.

So the fundamental underpinning of the two diseases is different, even though the net effect—excessive blood sugar and all the evil that comes with it—is the same. And while it may be possible to have both types of diabetes at the same time, it's impossible to move back and forth between the two.

If they are so different, why all the confusion and rampant misdiagnosis? Well, the signals from the smoking gun are not so clear as you'd think.

what type are you

In the old days it was simple (or more likely misunderstood): Kids who got diabetes were T1 and adults who got diabetes were T2. Then two weird things starting happening. Older and older people were dx'd with slam-dunk type 1. Oops. Oh, and then with the pediatric obesity crisis, slam-dunk T2 cases start showing up in kids, even VERY young kids. Oops again.

Diabetes = an equal opportunity employer.

Can't modern medical science sort this out more precisely? I mean, aren't there tests we can run? Well, yes and no. There are currently three types of tests used to ferret out the mechanisms underlying our diabetes: insulin levels; C-peptide; and insulin antibodies. In theory, any or all should be able to answer the original question, but in reality, all three are susceptible to false negatives and false positives.

Insulin levels measure how much insulin is in the body. A type 1 should theoretically have very little or none, while a type 2 should have enough for themselves and a couple of their type 1 cousins. The problem is something called glucose toxicity. If a type 2's blood glucose level gets extremely high—as often happens pre-dx—the toxic nature of that level of sugar can temporarily shut down the beta cells. They're not dead like ours; it's more like they're in a coma, but they aren't on the job and our poor T2 is still insulin resistant and now has no insulin production! It can look a lot like T1, and a levels check at this point would also look T1-ish.

C-peptide is another way of trying to sort out how much insulin is being produced by the pancreas. It's complicated, but the pancreas produces both insulin and C-peptide, so measuring one should reflect the other. Type 2s, in theory, should have a high C-peptide level while type 1s should clock a low amount. The theoretical beauty of the test is that if you are already taking insulin, this test can sort out what's being natively produced versus what's being imported. The problem, however, is that just like with insulin levels, glucose toxicity can throw a monkey wrench into the works.

Insulin antibody testing looks for tale-tell signs of the immune system's attack, so it could be a signature of type 1. But not so fast. For reasons that no one yet understands, about 10% of type 2s have insulin antibodies, as do some folks with other autoimmune diseases who don't have diabetes. And if you've had type 1 for any length of time at all, the levels fall to pretty much nothing.

All this lack of clarity from the three families of lab tests is confusing to the point that many docs don't even bother to run them, and instead just choose a diagnosis based on the preponderance of clinical evidence—basically how the patient presents. If it walks like a duck, swims like a duck, quacks like a duck, it's probably not a wildebeest. Right?

This is not as crazy or as random as it sounds, because the diagnosis really doesn't matter so long as the therapy is appropriate. Many type 2s can benefit from insulin therapy and many type 2 drugs—such as metformin and Victoza—have proven effective for us type 1s.

Bottom line: Even for the best docs, with the best tests, sorting out the 1s from the 2s can be an almost impossible challenge at first. Farther down the road it often can be sorted out, since short-term insulin therapy can resolve the glucose toxic state, removing many of the factors that can cause false positives. But this doesn't change the kind of diabetes it is. It merely lets us see the trees for the forest better.acceptance

But all of that aside, I also think you need to look inside yourself. You say you've gone to three endos already and and are looking for a fourth. Why? Do you need a bridge club? Many of them are telling you the same thing, but you seem to be having a hard time hearing the message. What's wrong with being a type 1? It's just a label, and the real issue seems to be that you need insulin! I worry that the extent to which you are going to avoid a T1 diagnosis may harm your health. It seems to me that you are playing medical roulette.

I think you need to accept your diabetes and get with the program. Pick one doc and stick with him or her. Oh, but don't choose that last doc. Why? Because while sorting out T1 versus T2 in newly diagnosed folks can be tricky, any doc who tells you can "go back and forth" is either incompetent, misinformed, or simply a fool.

 

This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

 
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This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.