Oh my goodness! I feel as if I’ve found the holy grail! I have 2 children who were recently dx with T1 within a matter of 2 months from each other. June 2016 and September 2016. Now January 2017 I’m having problems very similar to you. I put my son’s Dexcom on to see what I’m doing. My postprandial at one hour runs from 180-230ish. This is after 1 day of evaluating. My doctor dx me with T2. I’m 38, 125lbs and what I thought was healthy too. My GPA won’t refer me to an endo though and the antibody labs she did not run on me. I signed up with trial net for testing. I too experience lows and have for years. I was dx with reactive hypoglycemia though. But I’m worried I’m LADA. I’m sorry you are going through this but am glad I’m not alone.
Wow! So sorry you have so much to deal with right now. Sounds like you are doing a great job with your boys (and husband!) though. For what it’s worth, my antibody testing came back negative and my insulin levels are actually in range!! My LADA dx was perhaps premature and I may actually be pre-diabetic. However, I’ve been under the care of a dietitian for the past 3 months and I can say that virtually all of my lows have disappeared and I rarely get above 150 at a 2 hour post-prandial now that I am consistently eating meals that include lots of protein, some fat and no more than 30g carbs. It took an adjustment and I do have eat every 2-3 hours but I feel so much better in general. I’m hoping this will get easier with time and I can relax a little on those carb levels once in a while but overall, the dietary changes have made such a big difference to how I feel that I am happy doing this for the time being. Good luck!!
agree, this is a goooooood LADA topic. Hope it’s easily found to all the people who are not yet properly diagnosed, not yet a member of Tudiabetes… I had to read through probably close to a hundred pages/forum topics in the time I was diagnosed (which is not that long ago at all! in 2013) but I’m so glad there is more and more resources on LADA (but not that happy that it seems to be more and more frequent??)
Hi DrBB: Since Type 1 is not a reportable disease, it is a bit tough to get numbers, and then of course most of the slowly progressive Type 1s (LADA) are misdiagnosed as having Type 2 diabetes (this is improving somewhat, but it is still a miracle if you get correctly diagnosed). However, each year there are about 15,000 cases of acute-onset Type 1 diabetes in adults. Then about 10% of “Type 2s” are autoantibody positive, have been misdiagnosed, and actually have Type 1 diabetes. 10% of “Type 2s” is a massive number, and slowly progressive Type 1 diabetes greatly outnumbers acute-onset. I was also acute-onset Type 1, in DKA, but was still misdiagnosed as Type 2 based on age not etiology.
Thanks for the actual data @Melitta!
The more I read around here the more I realize how true that is. But this misdiagnosis thing still baffles me. I was dx’d at age 28 in 1983 and I never ran into anything like it, either with my original PCP or any of the others I’ve had through the 80’s into the 00s as school and career changes took me through any number of HMOs and clinics and whatnot (I saw my first actual endocrinologist in 2001 at Joslin). Anecdotally I know several others dx’d in their 20s over that period who never mentioned running into this, and a friend’s mom who was dx’d at age 37 back in the 50s, not to mention the esteemed Mary Tyler Moore dx’d at age 33 back in '69. All the instances I’m talking about were from back a while (I think the most recent was a guy I met on a business trip in 2004 who had just been dx’d at the age of 24).
This is all entirely personal and subjective of course, but it makes me wonder if, contrary to expectation, the problem of misdiagnosis is something that became MORE rather than less prominent over that period. One thing is that there just is so much more about T2 in the media than there was back then. In my case my dr explained to me right off the bat that it wasn’t unheard of to get “juvenile diabetes” at my age and that was why they were changing the nomenclature, (my official dx still reads “Diabetes mellitus: Juvenile type”). But it also seemed a much stronger assumption back then that “Mature onset” meant “Late middle age or older.” ALL the little pamphlets and recording booklets and collateral materials had pix of gray-haired folks bike riding, eating healthy meals and stuff (used to drive me nuts). Which may have solidified the idea that it probably wasn’t “Mature” if you were still in your 20s or 30s.
Again, just a subjective impression so I wouldn’t fall on my sword defending it, but there may be something to it. Maybe my doctor was just exceptional. But there really wasn’t all the “Diabetes epidemic oh noooooos!!!” hoopla back then, said hoopla being targeted overwhelmingly toward T2, and it wouldn’t at all surprise me to learn that it colors perceptions in doctors’ offices as well as out in the general public that create a strong unconscious bias in this direction.
Simple answer: you had a great doctor and got the right diagnosis at the right time. I know people diagnosed in the 70s and 80s who were misdiagnosed (my grandmother among them). However, I think it certainly can have become more common rather than less. My understanding is that the medical system is more stressed now than it ever has been in the US, and this makes it more difficult for a PCP to get things right: more patients, less time, more lawsuits, more research to keep up with, more drugs to be aware of, and, etc., ad infinitum.
Even today, it really just depends on the doctor. I was misdiagnosed by a nice guy who I increasingly think is just an incompetent doctor. I mean, he’s got good bedside manners, but…nah, he doesn’t even have good bedside manners. I just never needed him to be good before: run a physical; prescribe an antibiotic for an infection; clean out the ear canals on occasion… And then, he’s got to make a call for a 40 year old man on the borderline of overweight by BMI, who’s been increasingly sedentary over the previous 5 years, who has mildly high BG and a typical early-Type 2 a1c of 7.5%. His problem wasn’t the initial diagnosis; the reason he’s an incompetent buffoon is because he refused to do followups, spend more time with me, consider any treatment options beyond what the middle-of-the-road statistical solution calls for (Metformin and ADA diet and walking a few times a week).
So I had to find a new doctor (actually, two). And it turns out that either one of the new doctors I found would likely have followed up and gotten the diagnosis right: the only reason I got re-diagnosed is because of one of those doctors; I thought I was just a weird Type 2.
@DrBB, you make a lot of interesting points and provide lots of food for thought! I think that if you are diagnosed in your 20s, you stand/stood a decent chance of a correct diagnosis. For example, to this day medical school texts say that Type 1 diabetes occurs at <30 years with some exceptions. Well, a recent Medscape article that used genetic data found that half of all Type 1 diabetes develops after 30 years of age (note that the researchers did not include subjects over the age of 60, so more than half of Type 1 diabetes develops after age 30) (Miriam E Tucker, “Half of All Type 1 Diabetes Develops after 30 Years of Age.” Medscape, September 20, 2016).
But interestingly, those 10% of Type 2s misdiagnosed show up in research studies. The first one (Irvine WJ, McCallum CJ, Gray RS, Duncan LJP (1977) Clinical and pathogenic significance of pancreatic islet cell antibodies in diabetics treated with oral hypoglycaemic agents. Lancet 1: 1025–1027) was published in 1977, and found 11% were misdiagnosed. In the UKPDS, 9.7% misdiagnosed. Even worse, about 10% of women with gestational diabetes (GDM) are autoantibody positive, and the misdiagnosis or lack of diagnosis often results in fetal death (I cannot tell you how many women have told me that they had a miscarriage just before diagnosis, and they are often still misdiagnosed as having Type 2. It is heartbreaking).
I think you are correct, that the increase in Type 2 diabetes cases means that Type 1 gets overshadowed. And doctors do have less time. Really, if a doctor just takes a moment to look at the patient and listen to the patient, the chance of a correct diagnosis goes up. For example, when I was hospitalized, the endo on duty asked questions about family history of Type 2, but he didn’t ask questions about family history of Type 1 or other autoimmune diseases (Hashimoto’s is rampant in my family, and I have it now as well).
Anyhow, thanks for your comments as they are thought-provoking!
Thanks Melitta–it’s great that you have stats ready to hand, and I’m happy to defer to actual data as opposed to my own subjective impressions. Part of what amazes/appalls me is witnessing the whole history of the “Type 1” business and how ineffectual it has been in changing these erroneous perceptions not just among the public but among medical professionals. As I said, my diagnosing physician mentioned it to me in 1983 but it wasn’t yet in common usage (I was dx’d “Juvenile”). Over time it has become the standard reference, and yet instead of displacing the misconception it seems to have just been swapped in in place of same, so “Type 1” stands for “Only kids get it!” and Type 2 means “Hey, you’re not a kid so this must be what you have.” Just on a linguistic level it’s really quite a remarkable testimony to the futility of changing people’s minds by changing the terms they use.
–the aforementioned Mary Tyler Moore another case in point, if memory serves.
I was misdiagnosed in 2000 by not one, but TWO separate doctors, but I was “too old to get T1” (I was only 20). Neither would consider the notion that I might actually be T1 because of that, despite all other evidence suggesting otherwise… it was a long and frustrating process, but I finally got a doctor who did the right testing to confirm what I knew all along - that my prior doctors were morons and I really had T1 all along.
Whereas the whole f***ing POINT of introducing the term “Type 1” was to dissociate age from being a factor in diagnosis. The exact illustration of my point that instead of changing perceptions it just got slotted in in place of the old term without affecting the misperception at all. I’d lay strong odds that if you’d been nineteen instead of twenty, they’d have had no problem getting it right. Because “teen”! That’s a medical factor, amiright? Linguistic suffix = diagnosis, science FTW!
Did they mention any other cutting-edge medical terms, like excess of bile or choleric humors? “Nurse, bring me my fleam!” Grrrr…
I was diagnosed a T1D in 1984 by a young general practitioner in Boise, Idaho. I was 30. There were no antibody blood tests that I was aware of. I remember my age being discussed as a confusing factor but this doctor got it right. There must have been a c-peptide test which would have helped the doctor. I was unlucky to draw the short straw for diabetes but lucky to get a smart doc to diagnose me correctly.
Possibly, but I was first diagnosed 2 months and 8 days after my 20th birthday, so I was no longer a “kid”. In many regards I think if I had been diagnosed in the “typical” way, in DKA, that might have made it much simpler. However, I was pregnant, and my elevated glucose was caught “randomly” - and not when they were looking, so I wasn’t yet in real trouble. It happened after I saw a different doctor for an unrelated issue and he did a CMP to get a “baseline” on my liver and kidney function to watch for any changes that might occur due to pregnancy, that caught the elevated glucose. I found out later that I had been spilling sugar and ketones for weeks on the urine dipsticks, but no one told me - why that alone wasn’t enough for someone to say “hey, wait a sec, this is NOT normal!” baffles me… My initial labwork from the beginning of my pregnancy had not shown any issues (I was not yet at the point where major IR starts to kick in, either).
Honestly at this point it doesn’t matter - I was put in insulin immediately so at the time it made no difference. After when it didn’t go away if I didn’t take any insulin my #'s would skyrocket, so I kept taking it even when I was told not to.
Me too. So called gd picked, up in the first weeks of pregnancy by the endo who’d been managing my hypothyroud for years. Actually, recently reviewed old medical records and i’d had mildly elevated fasting bs for years even before that pregnancy - no hba1c was ever done. Dr never told me numbers were a bit high… and I didn’t know then what I know now.
After the pregnancy was told I could stop insulin. Ignored that advice and been using it ever since (more than 8 years now)… still no idea as to type… atypical something… Doesn’t really matter for now…
My doctors words exactly to me were “You’re too old for T1, you’ve got to be T2.” She is even the GP for my two T1 children. As frequently as members in my family have been coming down with T1 when I started having problems I went to the doctor immediately. I wanted testing. But I got the standard A1c and c peptide. She left me a message about my a1c but I know nothing of my c peptide. I signed up for trial net testing bc even if I end up not being T1 then at least I know for sure.
It’s really upsetting the lack of knowledge the general population has or doesn’t about diabetes. Even since my boys were dx, the remarks people have made is very disheartening. When school started and I called the school nurse to figure out exactly what I needed to have in place for my then only, recently dx 10 year old the NURSE informed me he couldn’t take insulin at school it would have to controlled via diet. Let me tell you, there is a great panic that sets in you when the NURSE at school has this opinion. So even among “qualified medical personnel” there is a lack of education about diabetes. I’ve faced it countless times with my boys. And talk about attitude when you prove them wrong. Oh well, I’ve gotten under alot of folks skin when it comes to my boys care. They’ll just have to get used to it bc it will be done right!
The other thing I know of is that an early diagnosed T1 was swapped to a pump when she became pregnant. She got a crook set and through inexperience with the pump, went DKA. With a following miscarriage. If they left her on MDI or went un-tethered with a mixed basal, (75% lantus 25% pump) …she most probably wouldn’t have DKA’ed and quite likely had a different outcome.
If you are living in the United States, you need to establish a 504 plan at school for your children with Type 1. This will help with making sure they get the best care possible while at school.
ETA: This may be a moot point if Betsy DeVos’s nomination is confirmed. G-d save our children with diabetes who attend public schools!
She was just confirmed: first Cabinet level position in US history to be a 50-50 tie in the Senate; deciding vote was cast (in favor) by the VP of the US, Mike Pence. So, with the stunning mandate of a 51-50 confirmation vote, DeVos is now the incredibly unqualified Secretary of Education.
Incredibly unqualified indeed! I feel sorry for every child in America, especially for our children with diabetes.
It might be moot in another year if the bill just introduced to eliminate the Dept of Education is approved.