The State of TuAnalyze, Jan-2011

Great feedback, Holger.

Interesting! I’ll watch for the change in Hungary too.

Two things.

First, I find this project not very useful because it does not include the type of diabetes that each of us has (i.e. Type1, Type2, Type1.5). It should be trivial to include that question when Tuanalyze is collecting information. As a T1, I see no benefit in comparing my A1c to Type2’s who have a very different treatment regime. And I imagine T2’s would feel the same about comparing their A1c’s to Type1’s. You could break it down even farther if desired: i.e. chart T1 by decade of diagnosis; chart only T2 that are using insulin or T2 that are not using insulin; etc. If you’re asking us all to enter information, the more information entered the better (since it is all anonymous anyway).

Second, I was looking through my old doctor records, and found my oldest A1c went back to 1983. But as has already been suggested, the “normal” range for tests differs wildly from test to test when looking at A1c’s that far back. “Normal” ranges on the tests I’ve taken range from “5.5-8.5” to “4.0-7.5” to “4.0-6.0” to “4.2-5.9”. Clearly the A1c’s from these tests are not comparable. So the suggestion that you collect values way back in times seems of little value.

Hi Jag,
About the first point, the diabetes type data is not asked for in the A1c part of the application. But it is information that is asked for in the survey:

As for the second point, it is very good feedback and I will make sure to share it with the research team.

This is a great conversation and I thought I’d chime in on the points raised so far.

First, A1c is a great and relatively (relatively) simple measure for self-reporting about diabetes health status. A1c can be used to describe a person or population. It is optimal to have other information together with A1c – including information about diabetes type, age, treatment, self-care and treatment etc. As Manny points out, these other measures are included in the survey so we can characterize A1c and diabetes in the community. It is more complicated to map and display real-time stratified data (so A1c by type…), and we look forward to developing toward this goal.

Second, despite noting that A1c is relatively simple to measure and self-report, the measurement and meaning of A1c are not unchanging. The heads up about global measurement conventions (from Holger) is appreciated. As are Jag’s comments about needing to understand A1c by type and over time. The app collects A1c in % for this reason, but we have color coded the interface to correspond with today’s ADA guidelines (so we are using today’s lenses to look backward).

Third, the interrelationship of A1c and BG is of interest (to speak to Acidrock23) but reporting about BG is very complex over the course of a day, week, month as it’s tied to many dynamic factors so any one value has to be linked to many others measures; for this reason, diabetes care teams struggle with printouts of BG (reams of data points, nothing to guide understanding). An ambitious goal to link these.

Fourth, Dickengel raises questions of statistical significance and these are crucial to understand especially around any measures of change or comparison. Data in the slide deck note when a change is “significant” meaning outside the realm we would readily ascribe to chance.

Fifth, variability by lab is possible however even US national health surveillance systems rely on patient reports for health metrics including A1c values. We can all imagine a day when lab values will be uploaded directly into a system like this but we are not there yet.

Thanks for your questions. I hope these responses address your ideas and thoughts.

Elissa Weitzman
Co-Principal Investigator of the TuAnalyze Project

Maybe a better project than collating all BG might be a something along the lines of a worldwide attack on Dawn Phenomenon? To me, that’s the most problematic number as it 1) gets your day off to a bad start and 2) the often alarming numbers can lead you to take wild shots at things. Maybe it’s not a big deal but if even a 25% improvement in AM BG for 50% of the people, and focus on an important number might lead to overall improvement in A1C, some kind of “findings” and progress? This seems like it would be a reasonable project for say a community like Tu Diabetes? Threads or perhaps a group on the topic, results tracking, and progress? Maybe we’d need waiver forms or something though? I still think of Dr. Bernstein going to med school so he could spread his discoveries. At least for me, that one number made a huge difference.

Why should there be any difference in A1c’s between Types 1 and 2? Poorly-controlled people of either type can have sky-high A1cs, and I see that there is a 5% group here on TuD that surely consists of mostly Type 1’s (since Type 2’s are a distinct minority here). The treatment regimen makes far less difference than how well it is being adhered to and how appropriate it is.

Then there is the issue of low vs. high glycators, which is also irrespective of Type. I’m a low glycator – was diagnosed highly symptomatic with BGs mostly staying in the mid-200s and an A1c of 7.1, whereas when my A1c got to 10.7, I was comatose. Yet I have seen many instances of people talking about their A1c’s being well above that, and walking and talking and functioning perfectly well.

If we separated out all the possible confounders, we would each be a sample of one!

Those are interesting points that could perhaps further illuminate the data. I think that the TuAnaylze project links the one test that pretty much everybody flunks, or does a lot of work to pass, but only because you do a lot of work. Otherwise you would flunk too, and derive some meaning from it? Even if your A1C is “ok”, you still are pretty much in a small group and, were you not to have at least a monitor, significant #s of test strips and insulin, you wouldn’t last long. I would like to see more people of every flavor of diabetes be able to set and achieve goals. I think that the way to do that is through communities as, in many cases, we learn that people may or may not be getting what they need from their medical resources.

I think though that Jag is talking about the fact that in the early 80s at least, one A1C might not be ‘congruent’ with another one? I about freaked out when I went to college and went from 4 point something into the 8s but the doc (who wasn’t friendly…) was like ‘no, the tests are different, you need to improve though’ so then I didn’t see the doctor regularly for about 15 years.

I also am not sure I’d agree that sticking to a treatment regimen is actually the important part? I think that’s a problem for a lot of people (perhaps the PWD who aren’t hanging around here all the time?) because they stick to the regimen and it doesn’t work or the level of flexibility isn’t designed into the explanation so they keep beating their head against an impossible challenge? I think that it is critical to teach each person not so much a regimen but how to watch for and react and, eventually, anticipate the changes and get a feel for keeping an even keel?

Ok I am new here and used to achieve good results with out much trouble and no cgm. I was younger and more active. Over time I got older and less active and seemed to care less about the test. Finally something awoke in me and I am paying more attention to the test and using the CGM to help me mangae things. Question though, as you become smarter and learn how bettert o react, does repetitive success at the test get easier? I hope so. How about those with good ongoing test results chiming in.

I think what you proposes is a regimen - the patient should not be trained to do A, b, C but to watch for react and anticipate the changes in order to keep an even keel. Perhaps it is eth ever changing regimen There are so many factors to dial in that this becomes difficult and frustrating for many so they give up. Until we can get a less complex treatment ongoing support and education will be important. For me this board helps serve that purpose more than and Dr or CDE will because you can get many opinions from others who have been through the same issues.

Definitely however there is probably a “middle ground” somewhere between my “don’t ever ask the doctor about anything” and the AMA “don’t change anything withoug asking your doctor” approaches? A lot of people aren’t comfortable making changes but other people (e.g. the Lil Mama thread) are comfortable doing so, asking for feedback, being way ahead of the people providing the feedback and making progress? At the same time, what happens if well, something happens?

I’ve found that while I can sail along and do decently for a while, every now and then I will run into anomalies that require intervention. I could call the doc and get tests or perhaps write a log for a while and maybe learn things or I can just use my sense of what I’ve seen (“highs after lunch” “lows in the middle of the night”) and fiddle around with things which works ok too. It would not work well at all for someone who wants more precise directions from a doctor/ CNA/ CDE for whatever reason because they may prefer to wait 6 months to make changes to their regimen. I don’t think that’s bad unless the “off” is a ton of lows in which case, again, making some changes is more important? It appears that many of the people here are pretty comfortable doing that but I am always leery of suggesting anything to someone with a kid, other than to unplug all their video games, hide the remotes and do push ups with them. Not much about diabetes which is what they are here asking about.

My doc always says “call if you have any questions” and seems open to more communication but I don’t even bother. I suspect that the first thing they’d ask for when I called in would be logs and I’d have to hem and haw around that so that may contribute to my aversion to asking? I dunno, the whole communication thing seems sort of crazy to me, perhaps because the main person I talk to about all this is myself? muwhahahahah… :slight_smile:

Well the person you talk to seems to know what hes talking about. I had an outstanding Dr in TN at Vanderbilt University Medical Center that I met during the DCCT where I first got my pump. His focus was on teaching me how to take care of myself so that I did not need him. I wisj more would have the same attitude. Teach the basics of the things we can adjust and call if you get stuck! Otherwise we have the tools to monitor our progress. But just like avoiding stopping the car to ask for directions, sometimes I prefer to just figure it out for myself. I kinda look at the CGM as a GPS navigation system. It helps guide me down the right path!

I don’t do logs, either, because I am a very unpatterned person, and my days vary tremendously about when I eat, and when I sleep, and when I am physically active, etc. so there are no patterns to be had! On the other hand, I have a CGM, and I keep an eye on it and correct as necessary, and of course, I bolus as accurately as possible for food. As long as I don’t omit insulin (which is partly how I got myself into a coma; the other part being bingeing on carbs), I do OK, and don’t really need medical hand-holding. It’s not usually available, anyway.

I do appreciate being able to talk diabetes shop here, and I think we can do a service for each other by providing ideas, even if the only goal is to take the ideas to your doc. But for some people, self-management is a given, and it’s a personal choice as to whether to try out what someone else has talked about. We are not limited by HIPAA rules, and we’re not telling people what to do, but as adults, we have the right to do what we want. This probably horrifies medical people, but it’s diabetes reality for a lot of people. BSC put himself on insulin; I put myself on the pump – it’s NOT the responsibility of TuD, but the responsibility of bsc and I as adult individuals. I did my pump many years ago, but bsc did his insulin recently, and asked for and got input from the members. I’m sure he considered their information, but the decision was his alone.

I really don’t want medical professionals taking over this kind of website, because we enjoy a freedom that is invaluable and irreplaceable.

I still shudder to think about what would happen if someone were injured or injured someone b/c of the non-medical advice they got here, like something catatrophic, wiped out a van full of people or something like that. I’ve seen some stuff at work but haven’t quite come up with anything actionable yet.

How would that be any worse than the quackery that the licensed MD’s feed us. My wife nearly died due tho the advise of our MD who had her on an obsolete treatment with a long acting insulin insterad of MDI. She passed out in a grocery store and ate a grocery cart with $6000 damage to her teeth,. I don’t really see any medical advice here - just a discussion among peers as to what works for them. 10 minutes later she would of been in the car and could of killed someone. I broke the law and put her on my spare pump while we were waiting on a prescription from a new doctor. The dr’s have no accountability when they mis practice so I don’t see hte liability here. Just friends sharing experiences.

Just curious what would be an example of something actionable, and what action would you (or they) take?

Just because I told you, an adult, to go play on the freeway, if you actually did it, would I be responsible?

I have not run into this scenario but, purely speculatively, some person adjusts their basal rate based on advice here and flips out hypo and runs into a van full of people. The defendant happens to have a ton of insurance but maybe not enough anyway, ghastly disabling injuries on young people or whatever. The ton of insurance (which I recommend for anyone, diabetes or not…) would pretty much mandate an investigation and it is pretty standard to ask “what medications did you take” and the police investigation would generally have turned up the insulin.

At some point, the defendant blurts out an admission that “well, i changed my dose” and the plaintiff’s attorney might ask “why’d you do that?” hoping to dig into some malpractice policy or something and discovers that the defendant didn’t do it because of their doctor at all but some wing nut on the computer? Sure there’s a disclaimer (at the bottom of the page, does anyone scroll down there? I am not sure they’d have a really strong case but with a case worth tons of money, people will generally look for any sources of collateral they can track down.

My friends who have a (Very) young daughter w/ T1 have an email group but I’m not sure how that works compared to a bulletin board. I prefer message boards since there’s more diversityy in a broader field of knowledge. I will try all sorts of yutzing around with my settings but it may not be appropriate for everyone to do. I try to toss out disclaimers when I talk about IV R shots or sprinting when my BG hits 39 during a run.

I dunno if it’s totally actionable, since there are disclaimers all over the website but there’s been those bullying cases involving Facebook shenanigans and I think that they probably at least monitor that kind of case? In a lot of big cases, the insurance policy may be tendered but I have cases that are settled and paid because plaintiffs are suing the owners of the parking lot, the people who painted the stripes on the parking lot, etc. and we are along for the ride because we are a participant in the matter.

The other good defense we have is that the assumption tends to be that the diabetic person is entirely responsible and I have not “run into” anyone on the other side or on the defense who has a clue about this stuff so they just “punt” and get the cases settled. That makes lots of sense but but you read about people having trouble getting test strips, at the same time we live in a car-oriented society, where I attempted to reschedule my endo appointment and was told the next one was in April? What if someone were having “issues” and driving through crowds of people or something like that?? shudders

Well you definitely have a point about the vagaries of the law, and the fact that justice often ISN’T justice! The defendant in your case has a crappy lawyer, LOL!

I haven’t followed the Facebook stuff, so I don’t know about it, but I do remember the lawsuit about the lady that spilled hot coffee on herself and sued McD’s. It’s a good question about just where does individual responsibility begin and end. And since I’m not a lawyer, I can’t answer that question!


T1 are all without any insulin production (once past honeymoon). T2 make their own insulin but are insulin resistant; some T2 inject insulin some don’t; some don’t even take any medication but control with diet and exercise. That is a huge difference in my opinion.

You are not correct about the 5% group - I checked the first page (didn’t want to take time to look further); and of the 18 there, 2 have A1c greater than 6; two have private pages and don’t report. Of remaining 14 who achieve A1c in the 5’s, 8 of them are T2; 3 of them are T1.5; and 3 of them are T1.So only 20% of them are T1. My belief is that on AVERAGE, it is easier for T2 to achieve normal A1c than it is for T1. Note that I didn’t say it was easy, and I didn’t say it was the same for all T2.

Since low vs high glycators is not a generally accepted phenomenon, and since there is no test to try to categorize such groups, it isn’t useful to consider whether there is such a difference. You may believe there is such a thing, but there is no way to quantify it.

Thank you for checking out the 5% group – I stand corrected!

I think it is very hard to make generalizations about Type 2’s for a couple of reasons. First, it is not a homogenous disease – there are people with lots of insulin production and lots of insulin resistance; there are people with little to no insulin production with significant insulin resistance, and there are people with little to no insulin production and little to no insulin resistance, but who are not Type 1 because of the absence of autoimmunity (I personally know such a person). Second, Type 2 is usually progressive, and you can’t compare a newly diagnosed person, who usually IS making plenty of insulin with a late-stage person who is making little to no insulin. And not all Type 2’s reach this late-stage point. So I guess you can’t even use Type 2’s as a group for statistics, because there are too many differences among them.

As far as glycation, there is a FAQ on the newsgroup, and it cites a paper. You can look it up. You are right that most people including docs, don’t know about it, but that doesn’t make it any less real. I almost died because my doc didn’t realize that an A1c of 10.7 was life-threatening to me and I was on the verge of a coma. The eaG for 10.7 is about 260, but my BGs were actually between 400 - 600 - HI all the time for a couple of months (why I was too stupid to insist that he do something is another story! But I have a new endo now.).

In 1991, I had Fasting BGs of 138 and 3 months later, 131, which would be diagnosable today, but 2 months after that, I had an A1c of 4.8. Definitely NOT diagnosable.

When I was highly symptomatic by the time of formal diagnosis, and had BGs hovering around 250 almost all of the time (and I was testing a lot, because I already knew I had diabetes, and had a meter), I had a glorious 7.1. So I know for a fact that I’m a low glycator; I just hope it applies to all my tissues, and that I will therefore be less prone to complications. (So far, so good!)

I looked for the 5% group but gave up before I could find it? :frowning: