I recently shopped for a new endocrinologist (I moved to a new state and couldn't keep flying to see my wonderful endo of almost 20 years) and was frankly shocked when a NP insisted I was T2 strictly based on my age.
Geez...what, don't type 1's grow up to be adults...cause if one get's it as a child...they're gonna have it as an adolescent and adult and forever cause it certainly doesn't go away and there ain't no cure.
I'm realistic enough to know that the likelihood of the names changing is pretty slim, but the frequency of one's age being the one criteria used to Dx , to me, seems reason enough to change the names of the types of diabetes. Type 1 diabetes and type 2 diabetes just aren't difference enough from juvenile onset diabetes and adult onset diabetes. At least gestational refers to pregnancy. Just as people on this thread have been dx'd with type 2 cuz they are adults, leads me to believe that there are children dx'd with type 1 when they have type 2. At least insulin as a treatment (albeit in tiny doses perhaps) won't do the harm for people with type 2 (and often helps), no insulin at all for people with type 1 has dire results.
Calling type 2 Insulin resistant metabolic syndrome could work. And for type 1, I don't know maybe ;P.I.S.S.E.D.: Pancreas: Immune System Spoiled Everything, Dammit.But for type 1, something with auto-Immune in the name.
Another term I hate is DIABESITY. I have a hard time believeing it was coined by Farncine Kaufman, a leading pediatric endo. It feeds to the bla,ming practice.
What are some other ideas?
a child with type 1 vs. a child with type 2 would present profoundly different, IMO. I highly doubt type 2 children are being misdiagnosed as type 1's. It's not too common for type 2's to be wrongly misdiagnosed as a type 1 in adults either (there are clear factors and differences in the two). Type 2 children are almost always diagnosed as near obese or extremely overweight and do typically have a family history. A type 1 child presents, typically, extremely ill, near DKA, although not always quite there as parent(s) caught it early enough, thin and there's no mistaking the difference. Many of these type 2 children, sadly, already have high BP and cholesterol issues. A type 1 child never has any of these metabolic issues and most newly diagnosed type 1 adults do not either.
i agree too that a confirmed diagnosis of type 1 vs. type 2 is pretty clear. a fasting cpeptide w/BG's under 200's when testing is done is a standard test, also the way a patient presents, past history other confirmed blood work, metabolic issues, etc... I would imagine most GP's have a great deal of experience in type 2 diabetes as it is at epidemic levels right now and has been for a while. Most GP's have type 2 patients. Type 1 is still considered rare and most who don't specialize in type 1 have no clue. I would imagine too that GP's or even endos may try to discourage the use of insulin with type 2's because their diabetes is due to insulin resistance often because of weight, not lack of insulin, injecting analogs can increase the issue sometimes and also may discourage type 2's from getting healthier, i.e., losing the weight and working on the metabolic issues, which, when successful, often gets them off medications totally, no cure but still can be med free.
There could be many factors to this; better testing, better knowledge within the health care communities, we live longer now too. The concept of adult onset type 1 diabetes isn't some 'new' thing. Adults have been diagnosed with type 1 for decades, Mary Tyler Moore, etc..wasn't she diagnosed T1 - DKA (or near it) in late 60's or 70's. Different studies will show different results. We are just in such an epidemic of type 2 like never before. Decades ago there wasn't this on-slot of obesity and type 2 diabetes and it wasn't addressed in the media and everywhere like it is now. Thus, I would imagine if someone like MTM or a very thin adult with no metabolic issues presented with outrageous high blood sugars and DKA it wasn't just considered or assumed type 2 diabetes back then.
Great Post Melitta ...I will tell my story soon ...I am off to Victoria , BC this w/e , with Canadian Diabetes Association and Advocates ...just a tat busy , at least that's what I tell mself ; oh I am slow too .
As to your comment s about presentation of type 1 or type 2 being fairly clear, I was still mis-dx'd with very rapid type 1 symptoms. I was 30 years or so. Sent home with direction to get more exercise, eat better and lose weight (well, doesn't everyone's doctor say this?) Anyway, I was 5'6" about 105 lbs - after the rapid weight loss and peeing etc. My point is that if we get the info that diabetes can come at any age - and get that info not just to medical people, but to the general public - the general public will be armed with questions to ask. "such as where do you want me to lose the weight?" "Or , doc, I have no type 2 in my family". Not knowing anything about diabetes is why I went home, followed the doctor's orders and was found by a nosy neighbor in DKA coma. Had the public service ad's said things about the types and that they can occur at any time, I could have asked questions.
I also think that since not all people with type 2 are overweight, and there are obese people without type 2, that it is possible for a child to have the insulin resistance, and be slim. I agree with others who have said that additional testing is critical. Every patient deserves as correct a dx as possible.
were you diagnosed initially by a trained endocrinologist who knew what tests to perform, what to look for, etc..? thus, all of us adults who posted on here were misdiagnosed type 1's, myself included and I too was also very, very thin with NO family history...but we were misdiagnosed by GP's, NP's by health care professionals who have no clue that adults can indeed get type 1 diabetes, hence...the reason for this post to begin with. If one goes to an endocrinologist who specializes in type 1 and/or type 2 the diagnosis is typically made. I've never seen a young, thin child who has type 2 diabetes; insulin resistance is typically a clear factor of type 2, ESPECIALLY when newly diagnosed. Thin type 2's, and this is uncommon on not the standard, maybe they too are wrongly diagnosed or have a clear pattern and strong family history of type 2 diabetes. Exceptions to everything but a trained endocrinologist can determine between the two types, it's what they're trained to do.
You're right, trained endo's would give the right Dx. But, and I don't think I am alone in this, I was dx'd by an internist (my GP) with type 2. And yes he should have known better. But I didn't know there were key questions I should have asked, key info I should have shared, and tests to ask for. I also didn't know enough to demand a referral to an Endo. Luckily I had a (very often too) nosy neighbor who found me. She answered the phone when my day job called, and they dispatched the paramedics (I worked in fire-rescue and EMS). The endo on call at the ER nailed the Dx and I am here today to be a pain in everyone's ■■■.
I did mention thin people with type 2 because as I was searching for other people with D (pre-internet) I heard that some people had D and introduced myself. They were quite slim and I thought - yeah type 1, but nope.
Hi Sarah: I will have to put it all together, from all these great posts in this discussion, but actually I was misdiagnosed by an endocrinologist and so was Parrformance. Parr's was more recent, mine was 19 years ago. I had more rapid onset than Parr, as I was hospitalized in DKA. Maybe today most endos would get it right? Let's hope.
WHAT is rapid onset?? I think this is a made up word for confusing and for drama. There are so many types today that it is impossible to know what is going on....as many of the posts have indicated. The stats are boggling. The number of diabetics is a HUGE number - and where the dx and how the dx happens is less important than finding the trigger, cause, cure. Geez, when I was dx'd there were 3 of us (in my whole wide world)...now there are 347 million of us.
Hope springs eternal. This "putting it all together" is not helping the cause. A blog is not going to "educate" medical professionals. Everyone seems to think endos are the answer and I just want to educate the tribe and remind them that endos deal with a lot more things than diabetes...
Yes, dx should be definite, but when the disease continues to progress and morph and be elusive, then we need to take some control and responsibility for what we do know. Diabetes is a condition, and yes it sucks.
I lost 35 lbs in about 4 weeks. Suddenly thirsty all the time, numb feet, blurry vision, hunger etc. Even the physician's assistant believed it was Type 1 but it took about six weeks to officially get the diagnosis. I was started on Insulin by day two but was also on Metformin which had no affect on my BGs of course. I guess I want people to know that Type 1 strikes equally at all ages and that it isn't LADA either.It's critical people get the correct lab work.( My GAD was greater than 500.) I also want people to wonder what happens to juvenile diabetics because they don't seem to understand they become adult diabetics and still have type 1 diabetes. Sorry if I'm too wordy.
I think the main thing that makes many of us somewhat angry is that age was the ONLY criteria used. They determined that yes, we had diabetes, but since we were adults it had to be type 2. That's just too dangerous an approach. I admit, I don't know when more definitive tests came about, mine was a GTT, that I couldn't even finish I was so high. But the tests are available now and should be used - especially if the type 2 risk factors are not.
yes endos deal with more then diabetes but many deal with only diabetes, some specialize in type 1, pumps, CGMs, etc..some specialize in thyroid and other hormones, pituitary glands, etc...all these 'terms' confuse me as well. type 1 or type 2, no such LADA diagnosis either, there isn't even a medical code for that...children can have a slow or fast/rapid onset (which means DKA when diagnosed), can also have or not have a honeymoon..but they're not called LADA, it's just type 1 diabetes. as I said, adult type 1 diabetes has been around since the disease itself; nothing new, epidemic or more evasive about it.
well, maybe they'd lost weight after diagnosis, they're still going to be type 2, there is no cure for type 2 either but many can get off their medications and maintain a good A1C and BG level with diet and lifestyle, that's a given. who knows. majority of type 2's have metabolic issues, it's just a fact. not a fault, a fact. alone in this..ah, that's what this entire post is about, sharing type 1 mis-diagnosis. most endos, today, yesterday..can determine the difference between type 1 and type 2.
Sorry, but if you read those these posts, many people could have died. That is not drama. When I was diagnosed at age 21, (correctly as Type 1) I did not have much time. I would have been dead in a few days, maybe a week if I was lucky. This is not a made up word, and not a made up problem. It's not a difficult diagnoses, if they use a clear head, and it is medical malpractice, in my opinion, if they miss the diagnosis. It sounds like you have never been close to death because of this disease.
And BTW, people don't go to endo's when they have this problem. Endo's don't make the diagnosis. Every single PCP or emergency room doctor should know enough to make the distinction. It is not rocket science. Just plain ignorance.
I was correctly diagnosed with T1D two years ago at age 34. I had all of symptoms, rapid weight loss, blurred vision, insatiable hunger. I decided to see gp after I reached a certain weight. I knew if I dropped one more pound despite eating habits something was wrong. I went to gp who I had been seeing for over 14 years and he immediately diagnosed type 1 with A1C of 13.3%, scheduled an appt. with and endo that day and the next day I was with CDE group and on insulin. I was impressed with the speed and quality of care I rec'd. I think the CDE I was assigned was wonderful.
I was impressed with my gp's rapid response and care, but I was most impressed with his non-Rx treatment. Of course I'm crying and he said "please know I give people much worse news than this. This is manageable and you can have a great quality of life and it will be okay." He wasn't trying to minimize the seriousness or difficulty of living with T1D but also trying to put in perspective that it wasn't news of terminal illness and to let me know I could handle it. I needed to hear that at that moment b/c it helped set my tone in response to this illness: I can manage it and it will be okay. Also that same day, I spoke with my boss to let him know I wasn't coming in to work. He is also an MD who said, "please know this isn't your fault. I feel I hear in your voice you think this is your fault and it is not."
What do you want medical professionals to know about adult-onset Type 1 diabetes?
I share all of that in response to the question above: I would like medical professionals to know how much their words and responses impact patients. Those two statements from MDs have been my touchstones in this process. So so so important. I feel very lucky that these two Drs were (and still are) part of my life at that time.
well, that's very true. when we're first 'wrongly' diagnosed...we don't know what is wrong with us. Let alone knowing who or what an 'endocrinologist' is, A1C, basal, bolus, DKA....type 1 diabetes, i'm sure, never crossed any of our minds at the time. we just know we're very sick..with what, that's the question.
I was Dx with T1 at age 55. I was in DKA and had an A1c of 14. I had symptoms for a couple of weeks before the Dx. I lost 15 lbs., had blurry vision, felt really cra**y, had tremendous thirst, and was working up to the day before I was Dx. I went to my GP, at the time, who did a ketone test on my urine, it was 400. He sent me directly to the hospital and I met my endo there. I had an endo. b/c I have hypothyroid disease. I was admitted to the hospital, to ICU, my BG was 500. I was put immediately on insulin despite my age. I never was told it was T2. I am still on only insulin and doing well. I guess I am lucky to have been Dx as a T1 at that time. I never had antibody tests, I don't know if they were doing them at that time.