I'm Abby, I'm 23 and was mis-diagnosed as type 2 in July 2012. After 5 months of starving myself to try to see a bgl under 200, I went for a second opinion and was given the diagnosis of Idiopathic Type 1 Diabetes. Basically, I show all the signs of type 1 except for the antibodies that kill the beta cells.
Anyone else out there have a similar story? There is so little information online about idiopathic type 1.. looking to connect with someone who is going through the same thing.. since I can't even say "my body killed my pancreas" cause the doctors have no clue what happened to it! =/
If I understand it right (someone please correct me if I'm wrong) what you have experienced is called type 1.5 diabetes. www.diabetesfamily.net/.../type-15
There are other members on here who are type 1.5, though it seems like most are LADA and not idiopathic, like what you have.
To be honest, the only real difference I've seen in the treatment of types 1, 1.5 and 2 is the effectiveness of oral diabetes medications and the amount of injected insulin needed. Whatever type of diabetes you have, you are a unique individual who has your own insulin sensitivity and lifestyle. These forums have been eye opening in how we all have diabetes, but have found vastly different ways of treating it and living with it.
Sometimes people have the misconception that for those diagnosed with type 1 in childhood it's less of a shock than being diagnosed as an adult. In my experience, most type 1s struggle against and have to make peace with their diabetes as adults, just as someone with adult onset.
My doctor told me it's considered a "Type 1b." I like using that term to separate myself from LADA/1.5 since they do have antibodies, but they are working slower, whereas I do not have the antibodies at all.. it is just easier to say I'm type 1 and go with it.
This forum is so great - I'm learning so much and I thought I was pretty well-informed already! =)
Here's some of the info I've found on idiopathic type 1:
Type 1 B diabetes is also referred to as idiopathic diabetes, or diabetes of unknown origin. This form of type 1 diabetes is not autoimmune in nature, and tests for islet cell antibodies will come up negative. People with type 1 B have an insulin deficiency and can experience ketoacidosis (a high blood sugar emergency), but their need for insulin injections typically waxes and wanes over time. Patients of African, Hispanic, or Asian descent are more likely to develop type 1 B diabetes.
Exactly what sets off the complex mechanisms behind beta cell destruction and eventual insulin dependence is not completely understood, but researchers believe that it is likely a genetic predisposition to the disease activated by an environmental trigger.
Thanks for the information. It sounds like you have a good doctor.
That would be very tough to dose insulin if your body still periodically produces some. Have you been able to find treatment that works for you? Are you having problems with lows or are your blood sugars pretty steady? What have been your biggest challenges dealing with your diabetes?
It is crazy trying to figure out how much insulin I need. Generally I run a bit high (I see low 200's a lot). My first A1C check after starting insulin was 7.2, so I guess I'm doing alright. Recently my insulin intake has skyrocketed. I started on a 1/10 insulin/carb ratio but lately it has been closer to 1/6. It's also tough with the injections.. I have pretty low body fat (5'6", 120lbs) and the like, 3 spots I was able to use have recently all become extremely painful.. hopefully my insurance will let me get a pump, or at least a CGM! =)
Hi! I had the same thing, but different. I showed all signs of type 1 diabetes, I have another autoimmune disorder that goes with it. The only thing is that My antibodies turned out to be negative. My doctor told me I am considered type 1, because that is how she is going to treat me.