A while back, an author sought contributions from "young, thin women with Type 2 diabetes" here on TuD. The author was told that those "young, thin women with Type 2" were probably misdiagnosed and have Type 1 diabetes/LADA. In an email exchange with me, the author actually acknowledged that she had gotten so many responses regarding LADA. But sensationalism wins out, and Su Subramanian has published a horrible article in Women's Health magazine. The only sane person quoted in the article is Dr. Richard Bernstein, who says that the young, thin "Type 2" women are probably misdiagnosed and actually have Type 1 diabetes. Amy Tenderich over at DiabetesMine calls the article "c**p." I am really angry and appalled, because misdiagnosis can be so terribly harmful, and can lead to rapid onset of complications and even death due to DKA. What a terrible disservice to women (and all people).
what are you mad at inparticular?
Sushma Subramanian is not some hack journalist. As a science writer she has published in a variety of places like the Scientific American and Psychology Today. Her article clearly has major flaws, she makes a huge leaps of faith not backed up by any sources and she uses sources that by most people's definition are fringe sources (like the Cleveland Clinic which specializes in bariatric surgery). But I find it hard to hold her accountable for all the errors. Some of that responsibility lies with the medical establishment itself.
And Bernstein's quoted comment is all too true "The definitions of type 1 and type 2 are too vague." To the vast majority of the world (including big segments of the medical community), type 1 is when you end up in the hospital with DKA and have sudden onset diabetes and everything else is T2. And all the stuff about "preventing" diabetes, that is right out of the mouths of the ADA.
In the end, the message of the article is young women who are thin get diabetes because they yo-yo dieted, therefore they should diet and exercise to lose weight so they can prevent "full blown diabetes." That is really an illogical basis for an article.
ps. And people are angry because this type of misinformation harms people through misdiagnosis.
pps. You can comment on the article at Womens Health and if you really want you can find the authors email address.
There seems to be an alarming tendency or even desire on the part of commentators to infer that eating poorly (without clearly exploring what exactly eating poorly might be...) leads to diabetes somehow? I have to think that the "epidemic" is largely due to increased diagnosis and testing that wasn't done 30 or 40 years ago.
I agree with BSC that the medical establishment is to blame. The standards are vague and treatment focused, without looking at all at food, which is about 1/2 the battle of diabetes, whether it's T1, T2, LADA, MODY, TG, or some subset of non-explored versions of diabetes that are out there. Misaiming the medical establishment is a colossal waste of resources that everyone shares, as consumers of health care products.
Hi Timmy: I am mad because misdiagnosis (as Type 2 when the person actually has Type 1) is incredibly common and really dangerous. Manny Hernandez was misdiagnosed, Amy Tenderich was misdiagnosed, and I was misdiagnosed, along with so many of us here on TuD. If you are an adult and present with diabetes, you are usually diagnosed as having Type 2, largely because of the myth that Type 1 is a childhood disease. Not because of etiology or appropriate testing.
If you look at the thread here on tuD where the author asked for comments by thin T2's, all the respondents were LADA's who were misdiagnosed. Whats common in so many stories of misdiagnosis is they are given T2 meds and when that isn't working, as expected, instead of testing for T1 they are given more T2 meds or even accused of non compliance. Mean while high blood sugars are causing damage and stress which could be avoided with a few simple tests.
Even the "standards" for dx are a bit vague, people are told "you have prediabetes, come back in 6 months and we'll see how the numbers turn out...". It would drive me **nuts** to have my BG out of whack for 6 months! It also accustoms these patients to lower standards of "feelings", getting "used to" 120 which, while not bad, is not "normal" either and, plugging it into the "charts" increases one's risks of complications in the long run. I know that "in the long run, we are all dead" but I think that it is important to be engaged with a disease with the enormous nasty potential that diabetes has. I refuse to believe that I am "unqualified" or "stupid" about this issue simply because I haven't gone to medical school. In fact, a lot of the doctors reported here @ Tu appear to be negligent, working in collusion with insurance companies or otherwise misdiagnosing and negligently treating patients in the growing adult cohort.
I agree. I read this article and was shocked that there was so little focus on how some of these individuals are actually misdiagnosed and are put in significant danger when started on oral medications. I have discussed this with my endo because I have a sibling who, while not T1, it at very serious risk for developing it. My endo said that one concern is that many of the oral medications are contraindicated for people with t1, and there's concern that some oral meds could even hasten the development of kidney-related complications in T1s if prescribed inappropriately. Not to mention the risk of going into DKA!
My personal approach to such articles is to not only respond with a comment on the webpage itself, but to also write the author. I have done this many times when coming across an article that provides erroneous information about diabetes and, more often than not, I do get some response from the original author (and sometimes even an apology!)
This made me angry too because I was misdiagnosed and was begging to be put on insulin while they kept pushing T2 meds on me. It also makes me angry that misdiagnosis is so common but I've never seen an article written with the focus on why or how so many are misdiagnosed.
It boggles my mind how someone can publish an article in a reputable magazine with completely inaccurate information! And knowing that she was provided ahead of time with the correct information is even more staggering. Did she set out to prove a pet theory and then just ignored the information that contradicted that theory?
I don't know why I should be surprised. I was googling recently for another condition with correlations to diabetes and there was all the incorrect info from well-known websites like wikipedia, medmd, and others I can't recall: "only ten percent of diabetics are type 1's, type 1 is diagnosed in childhood, etc, etc." And why was I surprised also that the data correlating the other condition with diabetes was all for type 2?
I was misdiagnosed 5 years ago and it was in a rural community. Five years later, with LADA being discussed extensively in the non-medical professional community, and I am hoping some progress is being made. Reading posts from newly correctly diagnosed LADA/Type 1's has given me hope. But then people in "authority" (authors of articles, whether they actually have credentials or not) write articles like this and set it all back. We keep reading the phrase "thin type 2's". Has anyone actually met one? And not someone who was diagnosed and then lost weight. Let's put it differently: Is there any "thin type 2" on this board who has had antibody and c-peptide testing and still been determined to be type 2? Perhaps a few exist, but the vast majority of "thin type 2's" imho are misdiagnosed type 1's.
This is upsetting. I am another who was misdiagnosed. I actually walked around – traveling all over with my typically crazy work schedule with BG over 500 every day begging to get into a new endo in my new state of residence – any endo – to figure out why my once well controlled alleged Type 2 had, after a few months, gone so wrong. I was so so sick but I kept pushing through my daily life not understanding that I probably should be in a hospital. And even when I finally did get into an endo to give me insulin she didn’t do the antibody testing. It took more months and finally finding the right endo to get the right tests and proper education on managing my type 1. I’m tenacious yet I struggled to be heard and get proper help. What happens to those who are not as bullish as I am? I am forever appalled that there is such a lack of understanding about LADA. I believe that antibody testing should be the standard. I was so fortunate that I didn’t end up in a coma from my bg soaring during that period of misdiagnosis. I was lucky. I shouldn’t have had to rely on fortune when all could have been avoided with proper testing at onset. Every article or other form of public miscommunication about LADA perpetuates situations like the one I endured. It’s irresponsible reporting.
Hi irish, you've done a great job of gaining control of your bg and researching so good for you! :) I agree that you should push for more testing. I think it's important to be correctly diagnosed if you are type 1 because insurance coverage will typically allow more for type 1s than they will for type 2s when it comes to test strips, cgms, pumps, etc. and you may need additional resources eventually. Your description of your history certainly does throw up enough flags for further tests.
Hi Irish: I would ask for additional tests, including c-peptide and the full suite of antibody tests (GAD, ICA, IA-2). I think it is important to get a correct diagnosis and get correct treatment. I also wrote a blog with tips for the newly diagnosed Type 1, which I hope might be helpful to you. Best of luck!
I think i may have been in the same boat, just figured it out a bit later than you. I was diagnosed as a T1 in the hospital -- DKA with BG off the meter and an A1c around 12 at age 43. Put on MDI and got things in control. Seemed too easy, and after 2 years trying to figure out a new baseline that works for me, I have kept my A1c hovering around 6. Not in a honeymoon, but it seemed too easy, so had my C-pep done and came in at the very bottom of the normal range, so i am making insulin after originally being out of normal and testing positive for antibodies. Also I am in much better shape than before, but was only just pushing chubby and was always somewhat active. On occasion, I have under bolused while snacking chips and quickly shot north of 300, so I know i have an issue.
To the point, my endo that is great, says that in light of the C-pep results, he would probably have me on meds instead of shots to control my BG if i was almost anyone else. The reason he doesn't is that I don't mind the shots, and being an active runner, i would be hampered on meds even though they would work. I can accomodate workouts with MDI within hours of a shot or in advance with a little planning. However, on meds, once you make a change, it can take weeks to adjust, causing lows and other issues during or in absence of workouts. I don't want a pump, even though it might be ideal.
So where does that leave us? Does a label really matter. I have 1 or 1.5, but I'm not going to split hairs. If i don't take something I will end up in the hospital, so I am going with Type 1. Sure meds COULD work, but so would fasting or skipping carbs - it's all a continuum. I don't like 1.5 because if I end up in the emergency room, I don't want them even thinking I have anything at all to do with a type 2. I kinda look at insulin sensitivity, more than anything else to distinguish 1 from 2. If you are taking or producing gobs of insulin then i'd say use meds (maybe MDI, too) because your body isn't using it properly. If you are using efficiently, either endogenous or shots, then act like a T1. Whatever gets your A1c in line and lets you lead the life you want is the treatment you should use, the rest is just for insurance to bicker about.
If I was diagnosed earlier, I would probably be feeling like you. I was so far gone in the hospital, that a T1 diagnosis works for me, but maybe I wouldn't have been as mentally accepting of it, if i was gradually eased into my current state over the course of years. I'd possibly be arguing a misdiagnosis or trying to understand why meds aren't working as well. Just do what works and for peace of mind, get your C-Pep done once or twice a year to see if there is a trend.
I think the flighty writing speaks for itself.
I'm a young, thin type 2 and do kind of feel frustrated that there is very little information about or people who believe that you can be a young, thin type 2.I'm honestly disappointed that all of those thin type 2's were actually LADA/T1s. Before anyone asks, no I did not have the c-peptide and GAD tests and I may in the future, but the way my body acts is much more like a type 2.
I have a history of gestational diabetes 9 years ago and developed type 2 last year. I'm 29 and have been underweight most of my life, even during my pregnancy. Right before my diagnosis (which was difficult to even get because my doctor didn't want to run the tests since I was thin and there's no way I could be a diabetic), I was hungry all of the time and rapidly put on weight. I went from 105lbs to about 118lbs in the span of about 6 months. Once finally diagnosed and put on Metformin and reducing my carbs, I dropped to 100lbs in a few months. Now I'm up to 104lbs because I haven't been as strict with carbs. Last a1c was 5.5 early this month.
I don't fit the stereotype of a type 2, but my body acts like one. I don't believe I have been misdiagnosed because I am able to control my bg with cutting carbs and Metformin, I also had an OGTT done and my insulin levels were also tested and were high. The endo said that he would've thought I was type 1 if it weren't for the fact that my insulin was high. Other evidence is that I have a half-brother who was also diagnosed young and at normal weight. He has had type 2 for over 10 years now and still doing just fine on oral meds. Also, I have reactive hypoglycemia and suspect I had it long before my diagnosis of type 2. If my pancreas is still able to produce excessive insulin, I don't see how I could possibly be LADA unless I'm in a very long honeymoon.
Another possibility is monogenic diabetes (aka MODY). There is a Monogenic Diabetes group here on TuD, with some excellent resources.
Yes, I've read a lot on MODY and it's a possibility, but I'll probably never have the chance to be tested. I act like a type 2 and the type 2 treatment has been working for now. Type 2 treatment has also worked for my brother who has had it for over 10 years.
My boyfriend is another atypical type 2. He was diagnosed in his teens (about 13 or 14) and normal weight. Since he was young and ended up in the hospital, he was diagnosed with type 1 and took insulin from then on. When I started having diabetes symptoms and did my research, I became curious about his bg and insulin regimen as I never saw him testing or taking insulin. He said he took his long acting insulin most days, but didn't bother with the fast acting because it used to make him low too often. I convinced him to start testing his bg and at the same time he was getting into running and found that his insulin needs dropped until he stopped taking it. I told him to see his doctor because if he's really type 1 that couldn't be right. I recommended he ask for anitbody and c-peptide testing which they ran. He came back with no insulin or GAD antibodies and c-peptide showed that he makes plenty of insulin so he has been reclassed to type 2.
We are an interesting bunch, aren't we?
Most people who are overweight are type 2 and those that are skinny/thin are type 1 at the beginning of their diagnosis from my personal and nursing experience.