We have discussed here a number of times the ambiguity involved with antibody testing for T1 diagnosis. The occurence of antibodies in T2 and non-diabetics is well known. Even accounting for errors in diagnosis due to these ambiguities, it is inexcusable for professionals to err in the "wrong direction" and unsafely treat misdiagnosed diabetes no matter what their training.
The HUNT Study found that ~1.6% of non-diabetics are antibody positive, not 8% as you state. I have never debated that some non-diabetics are antibody positive; as Brian points out we have discussed the ambiguity of antibody testing here on TuD many times. However, no one has ever followed those "non-diabetics" for many decades to find out if they later are diagnosed with Type 1 diabetes.
There is a big BUT to your statement. Scientifically this is all correct and some people in the medical community despite of your criticism take the GAD+ as an indicator for T1. As a result some people with T2 will end up with a T1 diagnosis and protocol (like Halle Berry for example). They are unnecessarily exposed to the risk of lows due to the use of exogenous insulin. But compare that with a misdiagnosed T1. They have to suffer under the medical treatment of the T2 protocol for weeks or months. With some bad luck they will go into DKA and will be seriously harmed or probably die. Melitta was misdiagnosed and I hope you can understand why Melitta is making such a strong case here. Please do not feel offended about it. We are glad to have very high skilled professionals like you in our ranks.
JohnG, I am glad you mentioned how very different diabtetes manifests itself in each individual: It is not always "Your diabetes MAY vary; It is Your diabetes Will vary".. Too bad that many of the medical professionals that some of posters to this thread have been seeing do not realize that.
These Myths, quite dangerous premises; "Type 1 is only in childhood. "; "Taking insulin means you have failed and is the last resort" are believed by far too many. I cannot begin to tell you how many out of contol for years so-called type twos I hsve seen or heard about, who only got in better management after adding insulin. Unfortunately, many of them had serious complications ( eye problems, cardiovascuar disease, amputations, kidney disease and subsequent dialysis). I do not want to sound pessimistic,but is is so very real in my community. particularly among African-american men. There are random misdiagnoses, miseducation, added to a whopping dose of denial and belief in the aforementioned myths by both the doctors and the patients. I heard about three such cases of "diabetes diagnoisis and denial gone bad" this weekend; among type 2 men I know. I will spare the gory details of these cases.. makes me both angry and sad.
But I will keep praying for them and advocating for better care.
p.S.It is NOT your mama's "sugar diabetes". It is yours.
Our community values include diversity and respect. I can't even tell what this disagreement is about, but I can clearly see the tone of discussion. We should always come together as a community to support each other and discussions should never be personal.
Aeon, you're not playing nicely. Didn't your mother ever tell you that you catch more flies with honey than vinegar?
(says the trained elementary/primary school teacher)
I think you'll find some good information in this thread. The disagreements are part of that information - basically, there is a LOT about diabetes still being understood. Back when I was diagnosed, T1 was called juvenile or insulin-dependent diabetes, and T2 was referred to as adult onset diabetes. Anyone who developed diabetes as an adult was called "adult onset."
But a lot has changed. Once scientists started to measure things like antibodies and c-peptide levels, the classifications changed again, and we even learned that adults CAN develop T1 diabetes.
But here is where it gets messier - other forms of diabetes started to be identified. MODY, Type 1B, and even other forms of transient diabetes. Studies revealed that insulin resistance is caused by (or maybe even causes?) weight gain in some, but not others (hence that whole obesity/T2 diabetes correlation). Things are getting even more messy as genes for various forms of MODY are identified.
So...where does this leave YOU? The bottom line is that you have some form of diabetes. It may or may not be autoimmune; even if you have a negative antibody test, that doesn't mean you don't have T1. You just potentially have a different form of T1. You may have characteristics of both T1 and T2.
Whatever you do, you need to use the treatment that works for you. If insulin was working and keeping your BGs in check, stick with that. Sometimes, the cause is less important than the treatment and I think that's the case with you. You're so young, so it's important to get your blood sugar levels as close to normal as possible so that you have a long and healthy life. Don't be afraid to demand something. If you're not comfortable with the oral meds, demand to be put back on insulin. You can always find another endo.
I don't accept this.
I'm coming a little late into this thread, but just want to second the comments above about C-Peptide on its own not being definitive. It definitely must be taken into context with fasting blood glucose. You can still have C-peptide in the "normal" range and be insufficient to control your BG. That was the case for me immediately after diagnosis. I had "normal" C-Peptide , but a BG of 500. I was found to be ICA and GAD antibody positive and diagnosed as T1 (at 50!). Initially I was using 10-15 units a day, but over the last year and a half, my C-peptide levels have been falling as the autoimmune destruction continues and my total daily dose is now around 60 units a day, which is what would be expected for a T1 of my weight. (6'0 , 173 lbs).
Oral drugs which stimulate the pancreas to produce more insulin may simply lead to faster burnout of your remaining production if you are T1. You probably want to prolong what capacity you have as long as possible, which is why many on here suggest that if you are T1, you remain on insulin. Insulin sensitizers, like metformin, do not have this possible effect on the pancreas.
I went through something similar. I was put on insulin right away cause my pancreas were not producing enough insulin. After a year on insulin I had an A1c in the 5.2 range. My insulin needs just kept going down. Eventually I wound up in meds. So it seems there are a few people with similar situation as you.
I was just put on Jentadueto and Victoza. I hate the Jentadueto’s side effects. Have you had any?