Yes, and I lost the only online friend I ever saw face to face to that misdiagnosis. He developed diabetes in his 20s back before LADA was even recognized, sometime in the late 60s if I remember correctly. I met Bill online in the FIDOnet Diabetes Echo in the '80s, Eventually I got into a drug trial that was located near his home after we’d both switched to the Internet in the '90s, so I stopped to visit him when I drove there. Later on I took my wife along since we were celebrating our anniversary and we met his wife at a local restaurant.
He was suffering badly from heart disease at that point, and later became totally disabled by it. During those days we moved here to the Cleveland area, and eventually heard that he went to Philadelphia hoping to get heart surgery or perhaps a transplant to improve his life. That didn’t work out, so they sent him home to Rochester, NY, then he was sent to the Cleveland Clinic hoping for a transplant, the only remaining hope.
We went to visit him there, and he was left with no way to get on the Internet and was stressed out by that. So I mentioned it to the Listserve we were both members of at the time, and a member there way south of here (can’t say where) sent me a laptop to take to him in the Clinic so he could get online. We took it to him to his great surprise. Unfortunately he never got to use it, since his welfare payments would stop if he was out of his home state for more than 30 days, so he was sent 200 miles home in an ambulance. He suffered a massive heart attack and died the next morning.
This was all because he had been diagnosed as a Type 2, based only on his age, and they kept him on pills for 16 years, despite all evidence that became plain that he was actually a LADA. So I can say with certainty that his misdiagnosis killed him.
Hey Lizzie
Type 1 (what I have, diagnosed at age 12) always occurs in childhood…type 2 is sometimes called “adult onset” diabetes because it occurs later in life, .
Eric
I’m sorry, Eric, but this is not correct. Type 1 can happen anywhere from early childhood to middle age or even later. Type 1 used to be called “juvenile diabetes” because it was mistakenly believed it only happened in children. Many adults with late onset Type 1 were mistakenly diagnosed as Type 2, based on this assumption that Type 1 only happened in children. Some adult onset Type 1’s are a subset of Type 1 which has a more gradual onset than Type 1 has in younger people. This contributed greatly to misdiagnosis. (I am a Type 1 diagnosed at age 58). It has been recognized in recent years that there are actually a greater number of Type 1’s diagnosed in adulthood than in childhood. And the reverse is also true, there has been ore and more children recognized as type 2 (in part due to childhood obesity). But the old concepts die hard.
Type 1 is an autoimmune disorder which can be confirmed by antibody testing and it occurs at various ages.
M said that type 1s rarely have insulin resistance. I do not think that is true. See this link: http://www.ncbi.nlm.nih.gov/pubmed/12112937
quote: “Insulin resistance plays a larger role in the type 1 diabetes disease process than is commonly recognized. The onset of type 1 diabetes is often heralded by an antecedent illness and/or the onset of puberty, both conditions associated with insulin resistance. In the face of a damaged beta-cell and thus reduced insulin secretion, this change is enough to manifest hyperglycemia.”
A lot of us type 1s have insulin resistance, especially the longer we have diabetes. A lot of us also add Metformin which helps the body use the insulin, thereby reducing the TDD. That happened with me. I started out taking 20 something units almost 30 years ago and got up to 65 - 75 per day. With Met, I am back to 52-60 total per day. And I am a type 1.
From diabetesmine.com: “Some of the more creative and aggressive endos are prescribing Metformin for type 1′s, particularly if they are overweight or requiring very large basal insulin doses. In addition to having some mild appetite-suppression effects, it will enhance insulin sensitivity by hepatic cells (in the liver) and limit the amount of glucose secreted by the liver."
Neil, Metformin is great if you can take it. I wish I could. I have no c-peptide, am over 50, definitely overweight, but still have a very reasonable TDD around 28-38 units, depending on what I eat (and an A1C at 6.8% that I would like to be lower) .
One would expect that I would have a reasonable amount of resistance at my age. Most of my weight is thanks to insulin. (And that is not a polite ‘thanks’!)
I tried Metformin again recently but it was horrendous, even when I took the sustained release and poured more than half of it out of the capsule. I wish I could take it. It’s apparently protective for many conditions associated with diabetes. But “puberty associated with insulin resistance”? Tell that to the skinny kids running around here! Oh… wait… I used to be one of those kids!
TDD is Total Daily Dose of insulin. LADA is Latent Autoimmune Diabetes in Adults, a slightly different form of Type 1 that starts later in life, after ~age 20. Some call it Type 1.5.
