Hi,
I joined the group several months ago, but have not done a post.
I would like to hear from folks who have had Type 1.5 diabetes for more than 5 years. I was, like many of you, diagnosed with Type 2 diabetes. I struggled through many regiments of pills, became very sick, continued to lose weight. My sister, who was a nurse, contacted an endo doc who she knew, and explained my situation. He called me to come for tests and an appointment. My life changed dramatically as I began a regiment of insulin and Prandin. This went on for 5 years, during my honeymoon phase. I then went to straight insulin.
I have many thoughts and questions to talk to other LADA’s about. Anybody out there want to give me some input?
Now after further research, I am thinking I should have gone on full insulin right away to preserve some of my insulin production. My Gad test was showing that I was still making a bit of insulin.
Any thoughts on that?
Do you have any ideas on how you may have developed diabetes type 1.5? I had whooping cough and German measles as a child. Research has shown this may contribute to this. Also I was on some meds for migraines as I was older?
Hi Linda–I have had adult-onset Type 1 for 14 years now. I was 35 years old when diagnosed, and like most others I was misdiagnosed as having Type 2 (despite being hospitalized in DKA). Within a week, after really pushing the endo who saw me when hospitalized, I was correctly diagnosed as having Type 1 (I had no risk factors for Type 2, and am not insulin resistant). My honeymoon only lasted about 1-1/2 years. However, I use very little insulin (total daily dose = 22 to 25 units of Novolog in my insulin pump), so I wonder if I have a few islet cells still going. As for how we develop Type 1.5, it’s the same as how anyone develops Type 1 (since they are one and the same disease), which isn’t known. Speculation is that there is a genetic predisposition and an environmental trigger, possibly an enterovirus.
The GAD antibody test won’t show if you are still making insulin, but the c-peptide test will show if you have some remnant insulin production. The faster you get on insulin and use intensive control, the better your chances of preserving any remaining beta cells, and thus making your diabetes both easier to control and reducing your chances of complications.
Hi Linda! We have many people with LADA in our community! Please check out the group for LADA diabetics. There you can find many members who can relate to your experience!!
Hello! I was Dx in 2004 and my endo knew I was Type 1.5/LADA or Adult Onset of Type 1 during my visit. He placed me on oral meds and my honeymoon phase just ended in Jan 2008. I was placed on insulin and now I am using the Omnipod system.
Melitta,
Sounds like you are very well versed in your diabetes. Thanks for the input.
What is a enterovirus? I would love to research a bit more info on the genetic predisposition and an environment trigger. Not that it matters now, but when I was diagnosed not much was known of type 1.5, not even by my endo, even though he is one of the best, and sees mostly type 1 folks.
I also would like to get in contact with anyone who has had experiences with their dogs waking them up when they experience low blood sugars. My 13 year old cocker has awakened me twice in the middle of the night. When I checked my blood sugar, it was around 40. I would like to do some work on this, as just recently my other cocker, who is 4, woke me up, and my blood sugar was in the mid 40’s. I would like to find out more on this, and what a dog senses when there is a problem. My older dog is deaf now, and I always thought she could tell that my breathing was different, but I don’t think so since she is deaf. She did awaken me recently with a low blood sugar, so I am thinking that it may be related to the smell of my breath, or ?
The CDC webpage says that “enterovirus infections are suspected to play a role in the development of juvenile-onset diabetes mellitus.” The specific enterovirus associated with Type 1 diabetes is the Coxsackie B virus. What I have read is that a person who has the genetic predisposition to Type 1 becomes infected with the Coxsackie B virus, and the person’s killer T cells attack both the Coxsackie B virus AND the beta cells of the pancreas, destroying both (the beta cells “look like” the Coxsackie B virus to the body fighting off the virus.) However, this is not proven. Several large “outbreaks” of Type 1 diabetes have happened after serious outbreaks of illness due to the Coxsackie B virus, including outbreaks of Type 1 diabetes in Finland and Sardinia. All fascinating stuff.
Hi Anthony–My understanding is that the causal factors for Type 2 are entirely different. In Type 1, the destruction of the beta cells is autoimmune in nature (and thus can be detected by antibody testing). Type 2 is not immune mediated. All quite complex and fascinating.
My husband’s pekingese woke us absolutely howling one night when my blood sugar was in the 40s. She hasn’t done it since (though my CGMS certainly catches the nighttime lows now), so I don’t know. You’ve heard of diabetic alert dogs, right? They’re specially trained to catch lows, of course, but I think with any dog, subtle changes in human behavior can cause undue stress or concern.
Hi Linda: I am now 62 and was first diagnosed at 20, thin and active. I am still a good weight (140 and 5’9 3/4"), no complications at this point. My big problem over the years has been hypoglycemia unawareness. I have taken a number of ambulance rides and my life is scary despite all the testing I do. I didn’t require insulin for 5 years. I have had a pump since 1998. Please feel free to ask any questions. I’ll do my best to help if I can.
With friendship,
Jan Fronk
I am a T1.5 i found out because i lost to much weight but diabetes runs in my family my mother my father and my 2 brothers and my grandfather had it they were all T2 but back then they didnt have the tests they have now so who knows they could of been T1.5. my brothers are fore sure T2 because i sent them to my endo and she ran all the test on them.as for the dogs you can buy dogs that are trained to alert to lows and highs so it wouldnt be uncommon for your dog to do it they can smell your sweat and know .that is how they train them you wipe your skin with gauze and let the dog sniff it give them a treat if they bark if its to high or to low. good luck Patrick
It looks like your honeymoon period lasted a long time - that’s great! What oral meds were you on and were you on those for your entire honeymoon? Were you BG’s consistent during that time or like me, did you have weeks of what felt like your diabetes has disappeared and then weeks where it’s high?
Nobody has diagnosed me yet as LADA Type 1.5 and I don’t know if they will as the antibody tests are not available here. But I have read enough to be certain that is what I am. I was diagnosed Type 2 in July 2007. I lost 40 pounds without any effort which at my age (58 then) just doesn’t happen! I also have Graves Disease and I am aware that having one autoimmune disease predisposes you for another. I maintained with stable blood sugars on a combination of oral meds until September 2008 when my numbers started creeping up. I started basal insulin in February which couldn’t control my numbers and added bolus two weeks ago and I am finally stabilizing.
Sorry I missed your reply way back. Not really sure how long the honeymoon lasted since I was not able to get the BG into the normal range despite a staggering amount of exercise, weight loss and a strarvation diet. Canadian medical ■■■ protocol did not allow insulin at an early stage of the disease, now I need 100 units per day. One wonders if I had been allowed a few units if my diabetes would have remained manageable for a long time. Metformin and avandia did nothing. I was never properly diagnosed but assumed to be type 2 because of my age 46 at the time the disease developped. . Disease started after nose surgery.
Not only Coxsackie, but also Adenovirus (causes “colds”) has been implicated in T1 or LADA! And me, here, with elementary-age kids! While I suspect this has been brewing in my pancreas (and thyroid) for some time, I also think viral infections could spike antibody titers and thus attacks on organs.
