Diabetes Self-Management Blog

At the end of my blog post a couple of weeks ago ("Type 2 Diabetes—An Environmental Illness), Mary A wrote: “I am female, white, 47 years old, 5′9", 142 pounds, a runner, and in January 2007, I was diagnosed with Type 2. No one else in my family has diabetes. I have always been active. I have never been obese. Go figure.”

Here’s what I figure, Mary: You may not have Type 2 at all.

You may have late-onset of Type 1. This is sometimes called LADA (latent autoimmune diabetes of adults). It’s also called Type 1.5 diabetes or “slow-onset Type 1.”

In researching my book Diabetes: Sugar-coated Crisis—who gets it, who profits, and how to stop it, I came across no fewer than three cases of people misdiagnosed with Type 2 diabetes. These were people who, like Mary, were thin, athletic, middle-class, and not especially stressed or depressed. It didn’t make sense to me that they would have a lot of insulin resistance, which is what Type 2 is all about.

It seemed more likely that they were just not producing enough insulin. They were taking pills for insulin resistance, knocking themselves out with lots of exercise and a very strict meal plan, and their HbA1c levels still wouldn’t come down below 9% or 10%. When they went back to their doctors and asked to have their insulin production tested, it turned out that those levels were quite low. They needed insulin. When they got it, their blood sugar levels returned to near normal, and they resumed their healthy lives.

In LADA, your own immune system, or possibly a virus or chemical exposure, damages your beta cells. It doesn’t destroy them completely, so you still produce some insulin—just not enough. LADA or Type 1.5 diabetes usually comes on in adulthood, often slowly, so many doctors assume that you have Type 2 diabetes (which used to be known as “adult onset” diabetes) when you really don’t. People have died or developed unnecessary complications because they were treated for insulin resistance when they really needed insulin injections or inhalers.

Whether you have Type 1.5 or Type 2 diabetes, I encourage you to ask your health-care provider about insulin. The West Suffolk Diabetes Service in England encourages all of its Type 2 diabetes patients to consider insulin. “Up to 70% [of people with diabetes] report an increase in well-being following the change to insulin,” they say. They see an average HbA1c reduction of 1% to 2% with insulin. “Insulin used to be considered a last resort in Type 2,” these doctors say. “But the new trend is to start insulin at a much earlier stage.”

Even though Type 2 diabetes is a condition strongly related to insulin resistance, as long as your pancreas can pump enough insulin to overcome the resistance, blood glucose levels tend to stay normal. It’s only when the pancreas can’t keep up that a person starts to experience symptoms. So starting insulin therapy sooner may be the best treatment for many people.

That’s in Type 2 diabetes. If you have LADA or Type 1.5 diabetes, you can expect even better results. Getting the correct diagnosis and treatment might save your life.

If you have lots of abdominal fat, high cholesterol, and high blood pressure (elements of the metabolic syndrome), you probably have Type 2 diabetes. But if you’re like Mary, fit and active, there’s a chance you may have Type 1.5, so please aks your health-care professional to test you.

And let me know how it goes—post comments and questions here.

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Comments
  1. Here’s a good study on the value of early use of insulin in Type 2. As I said in the post, it’s even better if you have late-onset Type 1, or LADA.

    Insulin Therapy in Type 2 Diabetes
    from Journal of the American Pharmaceutical Association
    Posted 03/20/2003
    R. Keith Campbell, John R. White Jr.

    David

    Posted by DavidSperoRN |
  2. I would be inclined to ask Mary,the 47 year old, other wise healthy and fit if she recently had a virus or infection that could have possibly sparked off this issue.Type 1 or juvenile diabetes is usually dormant within the body until a virus or infection will cause the body to wage an auto-immune war within the body damaging beta cells within the pancreas.
    Please visit & contribute your story to my blog at http://www.juvenile-diabetes-stories.blogspot.com
    The Trials of Raising a Diabetic Child

    Posted by Bryan |
  3. I have LADA , when asked if I have Type I or Type II diabetes should I put Type I?Most forms only give these two options.

    Posted by Wendy |
  4. Like Mary, I was diagnosed as an adult in my 50’s. I have always been thin and active. I had gestational diabetes, but was still thin. I have no family members with diabetes that I know of. However, my grandmother and two of her sisters had it. I have been tested for LADA antibodies and came up negative. I am on very small amounts of Novolog insulin(2-3 units), and was on Lantus until recently. Metformin did not help at all as I am not insulin resistant. There is speculation that I have MODY but the testing is too expensive and my insurer won’t cover it. Is MODY also a type 1.5? Do those with LADA have to test positive?

    Posted by Becky |
  5. Hi Becky,
    Thanks for writing. Keep in mind that I am not a doctor, but I believe the difference between LADA and MODY (and between the different types of MODY) is mainly of interest to researchers.

    For people living with these forms of “Diabetes 1.5″, I believe it’s best to think of it as a mild form of Type 1. That’s a mild form of a very serious illness. I can’t tell if you’re on enough insulin. Maybe you need more and maybe you don’t, but there is, IMO, no sense in taking the oral type 2 meds. There IS a lot of sense in doing all the other self-management things you read about here. How are your sugars running?

    David

    Posted by David Spero RN |
  6. I have just been diagnosed with LADA after being mis diagnosed 5 yrs ago as type 2
    I have had to push to get this sorted out and ended up paying privatley to get to the bottom of it
    I have suffered with hyperglycimia since i was 14yrs old was alway under weight and was told by a gp to eat choclate to stop myself fainting
    at 21 was diagnosed graves disease, at 28 i gained 2 stone in one month and thought my thyroid had gone under active but was told it had not. I struggled with my weight ever since was diagnosed with Type 2 at age 34 and at 36yr old had to go on insulin ,when i put on another Stone in a week !
    I have had real trouble balancing my blood even tho i exercise and am very active and eat a low Carb High soya protien diet
    I am hopeful that the resent diagnosise will be the start of feeling better.

    Posted by shortie |
  7. I was diagnosis with type 2 diabetes about 5 years,and have been taken meds.(pills and byetta) my a1c is very good, it’s like i don’t have diabetes at all. but i do suffer with the chronic pain associated with diabetes. no one in my family have diabetes that i know off. when diagnosised, i was told that i had “on set” diabetes, but when i went to the classes for diabetes,there i was told by the instructor there was no,”on set” it was either diabetes or not, no in-between. so henced, the type two.

    Posted by Hattie Brumfield |
  8. Hiya

    I was diagnosed with LADA after suffering a stroke at the age of 41. Have never been overweight and no other family member has diabetes to my knowledge. My memory of that time is pretty bad but I remember being taught to inject myself with insulin - then moved to tablets and lately being threatened with having to self-inject again. Do ‘experts’ even understand all diabetes?

    From an early age I couldn’t face sugary foods so perhaps might I be type 1 which was never picked up on because I was a healthy eater? My mother used to be concerned about the times I was brought home from junior school due to fainting.

    Any thoughts welcome please

    Lynda

    Posted by Lynda |
  9. David,
    My A1c is 5.4 as long as I take my 4 shots a day:) I also carefully count carbs and try to exercise 3-4 hours a week. I was told by 2 doctors that 15% of people with Type 1 don’t test positive for antibodies. I had not read that bit of information anywhere in all the research I have done. I wonder if that 15% are the MODY people.
    Becky

    Posted by Becky |
  10. I was sure my Type 2 was under control since it was not high and i had lost a lot of weight. I ran out of strips for testing. We moved and until now I had no doctor. It takes months to get an appointment with one since there is a crisis in care.

    I went to a Internalist for a physical and was told to go on Insulin pens. The PA nurse met with me for educational training. She did not tell me how to use the meter or inject myself. She gave me a schedule for injections prior to bedtime. I chickened out and couldn’t do it without help.

    I asked for a referral to a Diabetic Specialist. He didn’t seem to have education for injection,etc. either. I told him of my sister having it in the hospital. He said, oh they don’t do that any more.

    Have others experienced this lack of Diabetic education?

    I started Metformin but it doesn’t agree with me very well. Forget talking with the doctors or nurse (call back 24-48 hrs).

    What tests are necessary to check for Type 1.5? LADA has auto-antibodies like Type I but are adults.

    The lack of good care and training is starting to catch up with us. Being old in a this country with Diabetes is dangerous.

    Posted by Judith |
  11. I was fascinated with this story because of what happened to me. I was told I had Type 1 Diabetes in 2004 after going into coma due to sepsis from a perianal abuse that wasn’t drained properly. I was at the time 57 years old. All my organs crashed but eventually came back except for my pancreas. Since then I have been taking insulin 4 times a day. Recently I wanted to get a pump but medicare wouldn’t approve it because they said I was not diabetic. My doctor said I was 1.5. I read a little about it and was shocked to find out my pancrease was producing insulin. I started changing my life. I was never heavy but gained 30 pounds over the last 7 years. I reduced all carbs dramatically, absolutely no bread if I can avoid it, and no dairy.

    I am on only Lantus at night and hope to get off that soon but I am a little afraid. I will be seeing a new doctor soon. My blood sugar levels during the day are rarely over 115. In the beginning my pancreas was fighting me but I believe it is because it was too lazy, thinking it was retired from its job.

    By the way, my AIC was always around 6 which I could never understand because I ate anything I wanted, just gave myself more insulin.

    What do you make of all this?

    Posted by Bernadette DeAngelis |
  12. I appreciated this article however it isn’t always the case that being overweight with the diagnosis of diabetes means that the person is type 2 and insulin resistant. I was recently diagnosed as diabetic and I have a BMI of 39, I do however run 3-5 miles at least once a week and have only been eating about 1600 cal/day for years (not that doing those things lost me more than 20lbs after 7 years). I’ve been overweight my entire life playing nearly every sport available and eating less than my size 2 former model, and size 4 doctor roommates. My father had type 1 diagnosed in his late 20s and my brother and sister (both obese as well) were diagnosed just after I was. If I hadn’t had a bad reaction on metformin and my Dr hadn’t been willing to try insulin despite my weight it would have been a lot longer before we figured out that I am sensitive to insulin, meaning that it’s not strictly speaking type 2 even though I am GAD negative. I’ve been on about 20 units of long acting insulin for 2 months my fasting glucose went from about 200 to about 100 and my A1c from 10.2 to 6.7. Hopefully it will only get better from here.

    The point is that you can still be obese and have a MODY mutation or LADA as the cause of the diabetes. My Dr. suspects that my family members and I have one of the MODY mutations and is looking into getting us tested. But I firmly believe my father would still be alive if his Doctors had focused less on his diet and exercise and more upon giving him an appropriate amount of insulin because they never gave him insulin to take with meals. They did however give him a hard time about diet and exercise and encouraged him to get a stomach stapling surgery (at only 250 lbs and 6′4) which restricted his quality of life considerably and made him sick to his stomach all the time. Eliminating carbs as the result of the stomach surgery did help with his blood sugar but he was sick all the time it wasn’t worth it. I am very thankful that I lucked out with such a great doctor willing to take in other factors than my weight. Most doctors would have kept telling me to eat less and exercise more not believing me that I always have been based purely on my weight and my diabetes would have only gotten worse. Being obese does not eliminate the possibility of LADA or MODY types of diabetes! Yet nearly everything I’ve read strongly suggests that it’s really really rare so that you shouldn’t consider this case if your patient if obese. I think that doctors should consider these rarer situations from the outset of the diagnosis long before mistrusting the patient about their willingness to exercise and diet. Anyway I hope my story helps someone.

    Posted by OverweightMODY |

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