I don’t fit in anywhere either, which is why I am so sensitive to this issue!
Since I put up my web page about genetic diabetes I’ve heard from people all over the world who have been diagnosed with it or have the symptoms (normal weight, high blood sugars, Gestational Diabetes, non-progression, etc.)
I have definitely heard from other people over the years online who became diabetic after experiencing pancreatitis, so it is possible there are more of you out there than you realize. Maybe putting together a data resource will help you find them via Google the way my MODY page has brought me into contact with people with oddball forms of genetic diabetes.
FWIW, there are quite a few older Type 1s who lost their pancreas function thanks to autoimmune attack who are insulin resistant. Developing some insulin resistance is a part of normal aging and people who have autoimmune diseases aren’t immune to it. Since so many people with Type 1 didn’t used to live to become middle aged, it wasn’t the problem it will become as people with better control hit their 50s.
So you probably aren’t alone even there in terms of finding other people dependent on insulin who have to contend with insulin resistance, too.
I hope you have access to a bright endocrinologist who will work with you to address both the IR and the beta cell failure. Meanwhile, there are lots of us here for you to hang out with so you DON’T have to feel alone!
So true Jenny, within Type 1s we are all different. Anyone with Diabetes whether it’s Type 1 or Type 2 must understand their Diabetes. I have been Type 1 for almost 50 years and each day with Diabetes is different for me.
If I can be so bold, I think the reason people are hung up on the Type 1/ Type 2 dividing line is because of the misconceptions about diabetes. I was diagnosed as a Type 1 diabetic when I was a young child. It has been difficult for me to listen to misinformed people tell me that I could “cure” my diabetes by losing weight (even though I’m in the perfect weight range for my height - BMI) or by following a diet. That is what people hear most often because of the rising numbers of Type 2 diabetics due to poor diet / lack of exercise (eventhough those reasons aren’t even the cause for all Type 2 diabetics - there are soooooo many possible causes Type 2). I think many people who were diagnosed with Type 1 as a child can agree. You start feeling some kind of loyalty to the badge of calling yourself a Type 1 because you are tired of the misinformed people. You don’t want to be associated with the diet/nutrition/ lack of exercise cause of Type 2 - just like, I think, many Type 2s don’t want to be labeled with “Type 2” if the cause of their diabetes is not due to poor diet or lack of exercise. The traditional view of Type 2 seems to accuse the person of not taking care of themselves, so nobody wants to be a Type 2. There is shame attached to that label unfortunately. We should all overhaul the titles! Let’s make up new ones!
Tracy.
Thank you so much for realizing that type 2 diabetics aren’t always about not taking care of themselves. I am type 2 and it was caused by a medication I was put on.
May I also add, lack of education for those living with Type 2 Diabetes. I have friends who are middleaged or seniors who are treated by GPs who only have a basic knowledge for treating Diabetes.
I was told that type 1 diabetes is due to the pancreas not producing any insulin and type 2 is where the cells in the body does not accept all the insulin, so the pancreas works in over time to produce more insulin, until eventually it gives up, and it is at this time that a type 2 will hae to tae insulin. But a type 2 is always a type 2.
And as for the reasons why someone is type 2, there can be as many reasons as there are for high blood presure. Sometimes it is mistreating your body - lack of exercise and too much sweet food. But this is not always the case. Some people it runs in their family, so they maybe really good i their youth, but still get type 2 in their later life.
I believe there is more of a problem in the US of obesity related diabetes than there is in the UK, which is where the misconceptions come in. Also, if you are type 2, being thinner and healthier can help you body use the insulin more effectively. So a healthier life style can REDUCE the chance of complications. But that does not mean that just because someone has diabetes, or complications as a result of diabetes, it’s because they don’t look after themselves.
I agree…this information is not correct.
I was a “correctly” diagnosed T2 diabetic and 10 years later am now a Type 1.5 and only b/c I have insulin resistancy but no funtioning cells.
Whereas, when I was first dx T2 my cells were still functioning just not very well.
Type 1.5 means LADA (Latent Autoimmune Diabetes in Adults). People with LADA do not have insulin resistance and instead have lack of insulin because of autoimmune attacks on the pancreas. Type 1.5 is really a variation of Type 1 and is a little different in that the onset is slower and you may not be insulin dependent at diagnosis. If you were correctly diagnosed Type 2, your diabetes was caused initially by insulin resistance. Some Type 2s do lose their functioning cells and become insulin dependent but that does not make them a Type 1 or 1.5.
What were your signs of type 1 ?
I have a friend w/ type 2 - just diagnosed in his 50’s. He has lost SO MUCH WEIGHT
… 6ft and 137lbs!! He’s on oral meds, but fasting b.s. is usually in mid 200’s.
His brother has type 1 - dx’d in his mid 20’s.
Losing weight and very high BG are often a sign of Type 1. Your friend should be tested for antibodies since Type 1 does not respond to oral meds. I was very tired all the time and thirsty. I had a lot of headaches and yeast infections. I was very thin so when my A1C came back high my doctor didn’t think it was Type 2 and I had the tests.
A simple C peptide blood test can tell your doctor if you are type 1 or type 2 diabetic. If you results are less than >.08 you are catogorized as a type 1.
I’ve been treated as a type 2 for 15 years, with insulin and oral meds. With no luck in lowering my A1c, after questioning my doctor about the insulin pump he referred me to the Joslin Diabetes Center and they ran the blood work to find that I’m actually type 1.
After trying Symilin and Byetta, they finall decided I’m a 1.5…LOL
Hi Cheli,
Welcome. Where you go is here to join the rest of us who are type 1.5 Yes, there really are a bunch of us out here. And no, it is not that we have abused ourselves or anything else. We simply exist, sitting right in between a type 1 and a type 2. It may seem strange but there is not one diabetic of any type that is exactly the same as any other. We are each different. You do the best you can. After juggling your diet and your insulin it will finally come together. It just takes time and trying different things until you finally get the right combination for you. Don’t expect magic overnight. But now that you have the right diagnosis you will be able to get the right combination to work for you. Just keep coming back and let us know how you are doing. Good luck. You are not alone Cheli. There are over two thousand members here and all of us are here for you no matter what type we are. We all support each other.
Some information in this forum thread is not accurate according to the latest diabetes research. A commonly stated myth is that in Type 2 diabetes, insulin production by the beta cells declines over time. This is not true, according to “Latent Autoimmune Diabetes in Adults: Definition, Prevalence, Beta Cell Function and Treatment” in Diabetes Vol. 54, Supplement 2, December 2005. In that article, the authors point out that if you remove people with autoimmune markers for Type 1a diabetes (aka slow onset Type 1 diabetes in adults almost always misdiagnosed as Type 2) from studies of Type 2 diabetics, “beta cell function was unaffected and preserved 12 years after diagnosis among individuals without islet antibodies.” If patients with LADA are appropriately removed from studies looking at beta cell function in Type 2 diabetics, there is no decline in production of insulin in the true Type 2 diabetics. [People with LADA are antibody positive and have Type 1 diabetes, according to the Expert Committee. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus states, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.”] The Expert Committee does not include a category of LADA or Type 1.5: if you are antibody positive, you have Type 1 autoimmune diabetes.
Publishing these two journals is the only thing the ADA does that is not utter and total crap. However, it is worth noting they do NOT fund the research in these journals and that they profit from publishing them.
There are many myths about Type 1 diabetes, and one of the principle myths is that it is a disease of childhood. Yet the knowledge that new-onset Type 1 diabetes is far more frequent in adults than in children is nothing new—I have a book published in 1958 (“How to Live With Diabetes” by Henry Dolger, M.D. and Bernard Seeman) that states that “[Type 1] diabetes is almost three times more frequent among young adults than among youngsters” and “the acute onset typical of childhood is not as common.” That was stated in 1958. Today, with antibody testing, the same statement is true. A new book, “Type 1 Diabetes in Adults: Principles and Practice” (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27).
Part of the problem that we who acquire Type 1 diabetes in adulthood have is that the American Diabetes Association pretends that we don’t exist (except for documentation in their peer-reviewed scientific journals), despite the fact that we greatly outnumber those with childhood onset Type 1 diabetes. . In information distributed to laypeople, ADA consistently says that Type 2 diabetes represents 90-95% of cases of diabetes in America and that Type 1 diabetes represents 5-10% of all cases of diabetes. However, this is false according to ADA’s own peer-reviewed scientific journals. That 90-95% Type 2 statistic includes people with latent autoimmune diabetes in adults (LADA), and according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.” Furthermore, the Expert Committee’s definition of Type 1 diabetes by the clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) So, in fact, Type 1 diabetes represents about 20% of all people with diabetes if all who fit the definition of Type 1 are included.
In the United States of America, if you acquire Type 1 diabetes as an adult, you will find that few resources are available to you, the American Diabetes Association and Centers for Disease Control include you in statistics of Type 2 diabetics (a completely different disease than the one you have), you will be excluded from most Type 1 clinical trials if you are older than 45 (and your relatives will be excluded, too) and you are likely to receive substandard treatment in the time period that you are treated as if you have Type 2 diabetes, a completely different disease both clinically and genetically (there is also a profound lack of scientific rigor in failing to distinguish between Type 1 and Type 2 diabetes, when tests are available to make the correct diagnosis, and misdiagnosis in fact is malpractice). The high blood sugars that result from trying and failing with pills for Type 2 diabetes cause agony and suffering, not to mention hastening the complications of diabetes.
This would describe my case to the dots on the i. The Canadian medical association diabetes treatment protocol did not allow any insulin until your beta cells were completely dead. When I asked an Endo about insulin early in my disease he said “you do not want to touch that with a ten foot pole.” I guess the old belief was that extra body insulin would kill the existing beta cells when the absolute opposite is true it is the high BG that kills the cells and extra insulin would have helped. On metformin and by loosing 85 lb and a very low calorie diet I was never able to achieve a BG of less 120 at any time. A small amount of Lantus or anything would have done marvels at that time.
I guess I am a typical type 1.5. It is comforting to finally have a name for this. I was 20 in 1966 and went in for a routine physical as I was changing colleges. I was thin as always, active, and had no family history. I was told that I couldn’t have had the disease for more than a month. It had been caught early. Five years of oral medications followed and then insulin.
