Niccolo, I am Kris in Melitta's white paper. And Lorraine - thanks for posting the link.
My big push is to get people correctly diagnosed so that the person gets the correct treatment. In fact, for many people the autoantibody tests may not be necessary (Niccolo, that may be your situation). But since so many people are misdiagnosed and given the wrong treatment, and since positive autoantibody tests indicate Type 1a diabetes, autoantibody testing can get a person to correct, life-saving treatment. There are so many people here on TuD that insisted on the testing, and when it came back positive their diagnosis was changed and they were put on insulin. As I say in my position paper, medical doctors already know how to effectively treat Type 1 diabetes in children and teenagers; that excellence in care should be applied to adults with new-onset Type 1 diabetes.
Agreed. But (having not read your paper yet) couldn't one argue that we should be treating to the symptoms, not the cause? In other words, it doesn't matter much whether the cause is autoimmune or not as long as means are found (whether oral meds or insulin) that keep blood sugars in check. I guess you're saying that diagnosing T1 correctly means one can skip the step of trying oral meds and realizing they're not working, and that lots of evidence suggests early insulin is helpful (and not just for T1s, but also T2s for whom oral meds prove inadequate).
Wow, Kris, your story is appalling. Remarkable that your doctor would tell you to lose weight when you were already very lean and that the ER docs would echo that. Having seen a lot of different endocrinologists over the years, I'm struck how mixed their own understanding of key issues sometimes is.
Just read the paper, fantastic work. And you're quite right, and contra some of what I wrote above, misdiagnosis or delayed diagnosis can have very serious ramifications.
Are we too greedy to want both, antibody tests and treatment tailored to the individual BG problems despite how well we fit a diabetes label? I was fortunate that my docs did the antibody tests. But they were negative and that fact held up my treatment, or halted it by one endo who simply threw up his hands and said, I don’t know, go to a teaching hospital or Mayo. I agree, antibody tests should run as a matter of screening from day one, but then there are those of us type weirdos who don’t fit neatly in the T1D or T2D boxes and are refused, or get delayed treatment because we are thin and autoantibody negetive:(
I was 5'5" 133 lbs still diagnosed with type 2 at first because I was an adult it was crappy and wrong.. I do have a curvy figure which may throw people off (like I wore a size 12 at diagnosis due to my hips) , I've lost 9-10 lbs (now a size 8) over the course of a year though due to various things that might or might not include my diabetes (probably more my gallbladder/bile duct issues) and can't easily gain it back and keeping it on is hard. My endo knew I was a type 1 by looking at my blood sugars and how I was only keeping them down by doing something similar to what they did before insulin (starving myself) but somehow the other doctor I had didn't get it. I had a crappy doctor before that told me I could eat what I want but i needed to exercise, lose some weight (lol what?) , and take metformin and test less than 3 times a day because it was driving me crazy? I have best luck with my endo, he seems to understand everything well, but that's probably because he's a type 1 himself diagnosed around the same age as me.
And to remind us that not all people with type 2 are overweight, the key clue for the first doctors I saw should have been absolutely no type 2 (none of any type actually) in my family - I didn't have the critical genetic risk factor.
Speaking of medical shortcomings, I have a family member whom I've repeatedly tested with fasting and post-prandial BGs that are both well over the diagnostic threshold for Type 2 diabetes, and who fits the Type 2 profile perfectly. I wrote a letter to the family member's physician explaining this, and the family history of diabetes, and suggesting that diagnostic tests were in order. The physician ordered the OGTT that is used to diagnose gestational diabetes (this individual is not pregnant), and the family member's results were both just a few points short of a formal diabetes diagnosis. And instead of the doctor saying to the person, you have pre-diabetes just short of the diabetes diagnostic threshold, but exercise and diet tweaks and perhaps also Metformin could help you get to healthier BGs, or even referring them to an endo, the doctor told the family member they were all clear and there was nothing to worry about! And I look like I just want the family member to share my condition (albeit Type 1 with strong suspicion of MODY in my case), and surely the general practitioner knows what they're talking about. So this person will finally be diagnosed with Type 2 in maybe a decade, after having put their body through many more unnecessary years of high BGs.
I dx’d myself 3 years ago. Was up every night for a week going to the bathroom numerous times
and drinking as much water as I could. Went into the ER and told the Dr I’m pretty sure I had type one diabetes. Of course he laughed and said what makes you think that? I told him because my symptoms led me to that conclusion. After taking blood and urine samples he comes back and says my BG is 580 and I’m definitely diabetic. He looked mad because I dx’d myself and was right. He said your probably type 2 though because of your age. I’m 5’11"
140 lbs. Pure muscle, low body fat. I said do I look like a type 2 to you? He looked puzzled. Lol. I was 28 years old at the time.
Good for you, Troy! I too diagnosed myself but did it in two stages. 1. I was peeing and thirsty and was also losing weight without trying, unheard of for me. I knew the first two were sx of D and looked up the second and found it was as well. I asked my doctor for a blood test for Diabetes and when she told me my fasting was 325 I had no idea what that meant, but just said, "so I'm diabetic, right?" (I knew already).
Unfortunately I was 58 at the time and still a bit overweight (lost the rest that year) so they automatically diagnosed me type 2 and I accepted it. Oral meds worked for 15 months when my BG started climbing again.2. I did research including coming on here and figured out I was in fact Type 1 which I told an endo who agreed. They should pay us!
Zoe and Troy - how did you know that the symptoms you were experiencing were diabetes? And especially, that you were thinking type 1? I didn't know anyone - even remotely - with any type of diabetes, and didn't know to challenge the Dx of type 2. That's why I am constantly trying to get the media to accurately coverage what defines diabetes, how one is diagnosed and for people with type 2 what the risk factors are and for people of all ages that any type of diabetes can be Dx'd at any age.
I knew because my brother was dx’d type one when he was 19. He had same symptoms but went DKA before going to the hospital. And like I said I was in great shape with active life.
Knowing someone with type 1 seems to be the deciding factor for a lot of people. I didn't know anyone with any type of diabetes so there wasn't anyone in my circle to chime in saying that type 2 just didn't fit. Because I cam close to "buying the farm" I get into people's business if I hear of a new Dx. I'll ask first, if they want my opinion, and suggest further testing.
My doctor ordered antibody tests today, but seemed to think two were sufficient, GAD and one of the others (I'm afraid I don't recall the name of the other). In my appointment, I suggested I thought there were four standard ones that should be screened for, the doctor sort of chuckled and ordered the tests for two. Does this seem incomplete?
I can fully understand your frustration. Know that you have had an impact on me and I'm sure on many others here. Because of you, I have continued to believe that I deserve a proper diagnosis and treatment plan.
After years of frustration and being told to eat less and exercise more I finally got a doctor who listens. I told her I was really unhappy with my treatment from my last doctor. I told her a little about my history. She has diagnosed me as LADA and put me on insulin. Of course she would love it if I keep up my diet and exercise but she doesn't feel those things will "cure" my diabetes.
Please don't give up in your advocacy. You make the world of difference to some of us.
Yeah Whirlygig! So awesome that you are on insulin and have a doctor that listens to you and HELPS you.
Firstly can I say a big thankyou Melitta as I have read various things you have written and they have helped me no end. As for misdiagnosis, here in the UK the practice now seems to be that if you don’t fit cleanly in to Type 1 or Type 2 they leave you as Type Unknown and tell you to keep an eye on things. Then if things haven’t progressed after a year they say you are Type 2, ignoring the fact that a patient may be LADA. In fact a surprising number of endocrinologists I have dealt with as a patient don’t know about LADA and how it plays out.
All of which really plays with your mind as a patient when after diagnosis you don’t know whether your great readings are down to being in the Honeymoon phase or whether exercise and modifying your diet is the reason for things improving. Throw in the frustration of talking to specialists who don’t know some basic facts to nurses who still judge you on age and weight and it is no wonder that many of those with diabetes in the UK feel frustrated and often abandoned by the system.