Diabetes Self-Management Blog

Thanks to everyone who has commented on “Type 1s Vs. Type 2s?” Really intelligent, heartfelt stories. I wish I had time to reply to all of you individually.

Reading the comments, it seems that we need better language for talking about diabetes. Some themes kept coming up. A thread for many readers was that Type 1 and Type 2 “aren’t the same disease.” Another recurring point was that many people with diabetes are neither Type 1 nor Type 2. They are both, or neither, or a mix of types. Should all these diseases be called by the same name? Are two “types” enough? If not, what would be a better way of naming and classifying these conditions?

Readers reported problems, from annoyance to dangerous misunderstandings and prejudice, caused by people’s ignorance about diabetes. What would help doctors, the public, and people with diabetes understand these conditions better? Let’s see if we can come up with some ideas.

The name “diabetes” is short for “diabetes mellitus.” Diabetes is a Greek word meaning “passing through” (a reference to urine). “Mellitus” is a Latin word that means “sweet.” People with elevated blood glucose tend to have sweet urine and a lot of it.

Diabetes was named in the 2nd century AD by a Greek doctor. The “mellitus” was added in 17th century England. This distinguishes the sugary kind of diabetes from diabetes insipidius, another condition with excessive urination that has nothing to do with glucose.

The Type 1 and Type 2 classification started around 1997. Before that, the usual terms were “juvenile-onset” and “adult-onset.” From the beginning, not everyone agreed that these are the same disease. For example, MedicineNet.com says “The two main types of diabetes mellitus — insulin-requiring type 1 diabetes and adult-onset type 2 diabetes — are distinct and different diseases.”

I think of diabetes as a range of diseases from pure Type 1, in which a person’s own immune system rapidly destroys insulin-producing beta cells at a young age, to pure Type 2, where insulin resistance eventually wears out beta cells so that they can’t keep up with increased insulin needs. But while there are some pure Type 1s, there are few pure Type 2s. As I wrote a couple of weeks ago, there is usually (Jenny Ruhl of Diabetes Update would say always) some problem with insulin production as well. And there are many environmental and genetic causes for insulin resistance, too. It’s not all, or even mostly, about behavior.

Some of these problems are called LADA (latent autoimmune diabetes of adults) and MODY (maturity-onset diabetes of the young). But there are at least six different types of MODY. There are probably several types of LADA, and there are other forms of diabetes as well. Diabetes of pregnancy (gestational diabetes) is well known. The National Institute of Diabetes and Digestive and Kidney Disease lists at least eight other causes and types at their Web site.

Since the liver stores extra glucose and releases it as needed, liver problems can also be associated with diabetes. Reader Bill H-D posted,

Insulin resistance, inadequate insulin production due to beta cell loss (autoimmune or otherwise), and improper liver calibration (I like to think of it as a broken thermostat) all play a role in all types of diabetes, depending on the individual. And those are just the main three that we know about and have common [drug] interventions for.

It might be that no matter how many types are created, there won’t be enough, because diabetes is so individualized. Reader Cindy B posted, “I focus on MY DIABETES not someone else’s Diabetes.”

It’s clear, though, that most health insurance companies and most doctors don’t see diabetes as an individualized condition. As Joan pointed out, many don’t even know the difference between Type 1 and Type 2: “especially emergency room physicians who refuse to give orders for insulin to a type 1. THAT is when it becomes a problem. When [docs] ASSUME one of middle age is a type 2 automatically, then I get mad.”

A reader named Nicole, with Type 1, thinks that “diabetes is diabetes. We all face the same challenges and choices once diagnosed with it.” Others disagreed, like Jim Devlin, who finds “many more differences between Type 1 and Type 2 than there are similarities.”

It’s hard to live with any kind of diabetes, and the ignorance of people and even of doctors makes it harder. Pamtime, who has LADA, wrote, “I still meet people [who] lecture me on how to care for myself, or [say] that I should have taken better care of myself as if this is some punishment meted out by a higher power….ignorance is rampant…”

So as reader DFBabb asked, “Where do we go from here?” Some readers thought we should separate Type 1 from Type 2 by renaming everything but juvenile onset Type 1 as something else. As what, though? “Insulin resistant,” as suggested by Lisaann, doesn’t really cover it, as many people with IR never go on to full-blown diabetes. We could certainly use a better classification than the current Types 1 or 2, though. Should most people with diabetes be reclassified as “Type 3,” (or maybe Type 1.5), which might have less stigma?

How do we educate the public so they stop blaming people with diabetes for their problems? How do we get the media and medicine to stop equating diabetes with fatness or laziness? How do we get them to know or care about the diversity and difficulty of lives with diabetes?

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Comments
  1. I agree that there should be two names. How about

    “Glucosis Martyrus” for type ones and “Diabetes Lazyfatjerkus” for type two. After all, that’s how the media (and a lot of Doctors) see it.

    Posted by John Q |
  2. great article. without beta cell failure, no diabetes shows up. Genetic findings support beta cell vulnerability in T2 DM as well. Classical categorization does not lead to innovative treatment nor the resolution of social stigma particularly against T2DM.

    Posted by ted2ann |
  3. Thanks for the follow up post, David! It is important for folks to know that the root causes of DM are not well known. By. Anyone. That includes your family doctor.

    I think ted2ann and I are on the same page. Impaired insulin response due to beta cell loss is fundamental to DM. Causes of this across all types are less than clear, but co-occur with IR, Liver function problems, pregnancy, and a number of other conditions.

    Innovative treatments and curative interventions are not likely to come from trying to draw fine lines among the various types.

    Posted by Bill H-D |
  4. From my observation most type II diabetics are fat. Pershaps we should delve into why some of us get fat and some of us don’t. Then once fat has us THEN we get type II? Just a thought. Oh, and there are a lot of fat people who do not overeat.I think some of us are born with the predisposition to I or II and there is nothing to be done to stop it.

    Posted by granny Pat |
  5. Adding additional names for the various types of diabetes could help physicians better treat new patients, for example in ERs. But I think it would do little to help the general public. In fact, it would probably just further confuse people who already do not understand the differences between Type 1 and Type 2.

    What really needs to happen is better education for the general public about the disease and ways to prevent it (although it may not always be avoidable). The scariest part about the lack of education about the disease for me is within the medical community. I would think that diabetes would be a condition that would be covered within the first week of med school, but perhaps that just isn’t the case.

    Posted by Elly |
  6. Think I have the most fun when getting a new glucose meter — they don’t leave much room in between Type 1 and Type 2 for me to write in “Type 1.5″ (LADA)

    I went through hell a few years ago when all the “professionals” were telling me how to treat my condition… it didn’t work! Well with the help of some great people (like Dr. Bernstein) I did figure it out. In the beginning I had to almost beg for diabetes tests because I didn’t fit the “profile” and was a trim 145 lbs (same as 25 years ago). A1c came back as 12.1 — 5.1 now!

    Yes it is time everybody took a different approach to this disease.

    I also especially like the type of supplement that the Canadian Diabetic Association put in a national magazine here in Canada. Sort of hinted that if I didn’t eat myself into fat, I wouldn’t get Type 2 diabetes… gee isn’t it well known now that statement isn’t exactly true? Must have been on a fund raiser :-)

    Chalk me up as getting pretty sick of the prejudice surrounding Diabetes too.

    Posted by John_C |
  7. Well, for now I call myself a “Tu” diabetic for Type unknown. I am not overweight (no metabolic syndrome or T2 in family), have autoimmune disease and T1’s in my family, but so far have no GAD antibodies. I also am not insulin resistant.

    For now, my Endo is classifying me, by default, as a Type 2 and says I have insulin insuffciency without insulin resistance. I have enough insulin to deal with basal metabolism, but I can’t eat much of anything without oral medication. I feel as though I am in limbo. Not a comfortable place to be.

    Posted by Annie Gibbs |
  8. I agree that a new name needs to be thought up. I dont particularly like having a condition that sounds like it starts with word “die”. Kinda forboding if you ask me.

    Posted by Russell |
  9. We do not nead more names. We need more solid research and investigation of type 2.

    All the data I see suggests that most research funds are being spent on the 15 % per cent of the diabetes cases - Type 1 and for the other 85 % - who nows. On top of that little has been done to identify, research and identify practical management techniques and cures to save eyes, limbs, kidneys and lives.

    I am appalled at the mentality that type 2’s are lazy jerks.

    Approaches for Type 1 are simply that. As for type 2 - written off as fat and lazy. Using Type 1 cures for type 1 for type 2 is idiotic.

    Tytpe 1’s generally cannot saturate their skeletal musscle cells due to no insulin or little.

    Type 2’s suffer from glucose saturation and resulting insulin resistance causing backup of glucose and resulting high numbers and rot out.

    How many years has it taken ADA to come up with a rational statement and proposed new cures stratagy.

    It is time to stop the crap,discrimination and useless name calling and statements hurling abuse between canps and get this scourage mopped up

    Posted by jim snell |
  10. What about someone who has lost 72 ibs; and controls their dibetes with diet band exercise alone. Even after I eat, my BS doesnt go over 105 mg/dl. I was on insulin and metaformin after I got out of hospital, but over the next two months my meds were grad. reduced. Then stopped.
    My last a1C was 4.9. My docter says I show no physological sign of diabetes, and keep doing what I am doing. Should there be a classification for this type of circumstance?

    Posted by Chris |
  11. Hi Chris,

    It seems you have cured yourself or at least put your diabetes into remission. Your accomplishment is not that uncommon, actually, although you have done it more thoroughly than most. Good work!

    Posted by David Spero RN |

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