Diabetic Mind... explore it?!

Type 1 and LADA
1

When does our vigilance, our attempts at "control" become too much, a mental condition per se? Can we test "too much"? If we literally will not leave the house without testing is THAT too much? If we won't let little Timmy, or young Mary from our sight without testing them first is that too much? How many times per day can one test before it becomes major Type-A behavior which evolves into something far worse?

When does our testing become something irrational? When is the testing over the top?

Anybody?!

2

It's not at all irrational to test. If you aren't sure, test. If you don't have a CGM and want to be sure, it's not a bad idea to test again in 15-30 minutes to track your delta. If you practice, you can get to where you can estimate where you should be fairly well but I disagree with anyone saying that someone is testing too much. I wouldn't put control in quotes either.

The medical insurance industry likes to portray us as out of control because that justifies a short medical "leash" and lots of guaranteed income for doctors for appointments, CDEs for appointments, labs for tests, pharmaceutical companies for supplies, etc. At the same time, people who seem to succeed and achieve decent results are so far outside of "their" (M-I industry...) "bell curve" that they (we?) are looked at as freaks and castigated, even gently for doing something wrong ("too many lows, you should run higher than a person without diabetes...").

The biggest problem with the "state of diabetes" is not the "cure" or the "artificial pancreas" but using tools we already have in our possession to progress towards goals, one step at a time. Since "failure" is the assumption doctors make, it's not susprising that so many people are able to achieve it? Unfortunately, I didn't go to medical school so I have no standing to make a proclamation like this however I have to call it like I see it.

The biggest barrier to achieving success is testing enough, whether it's because patients themselves are discouraged from testing because "it hurts" or "it's inconvenient" or "it doesn't matter anyway" or because some actuary sees "obsessive" testing as an opportunity to achieve some sort of "prowess". None of the doctors who have suggested patients are "obsessed" with testing have been brave enough to drop by to explain themselves however I would be happy to tell them that I think they are full of crap. To me, the anti-testing sentiment pervading members' reports is a huge concern. Whether it's a doctor or a CDE or running into a barrier to test, I don't think this is at all appropriate to a disease that obligates you to test.

3

I agree 100% with everything AR said...and I also think there is such a thing as "obsessive testing". While I hate to even use the term since it is the way doctors dismiss us and our wisdom, I do think there is a line that can be crossed. I don't think it's possible to quantify it with a particular number because we all have different needs, but there is a characteristic I can describe.

In Abnormal Psychology one way we describe what is abnormal is with the four D's: Deviance, Distress, Dysfunction and Danger. Just one of these alone doesn't point to abnormality, but all of them combined. So applying the question to "obsessive testing": Deviance does just what I said we don't do: quantify. But if your average Type 1 tests 8 times a day and someone is testing 30, they deviate significantly from the norm. Dysfunction: If someone is so fixed on testing their blood sugar (and worrying about the numbers which is the precursor to excessive testing) they probably are having some negative impact on their lives such as poor work performance and negative impact on their relationships, maybe financial impact from buying extra strips. Danger? This is the only one that's a bit of a stretch, but if somebody is testing while driving (it's distracted driving month!) that's dangerous. I saved distress for last because that's the most important one here. If someone is filled with anxiety, worrying about going too high or too low, and consequently testing every hour but still not feeling reassured, or obsessing over a marginal number they are experiencing significant distress!

Finally, I think testing with a purpose is kind of key. The traditional test times: waking, before and after each meal and at bedtime all have a purpose and we use the results to make treatment decisions whether immediate or long term (as when we see patterns and change basal or recognize a food we can't eat successfully). If we test after correcting, we are seeing if we've been successful. Testing before driving keeps us (and everyone around us) safe. Etc. If we are testing "just to test" or because we are anxious, then something else is going on.

But again, I think for the most part doctor's cries of "obsessive" testing are ignorant and harmful defense of their own egos.

4

IF YOU WANT TO KNOW WHAT TIME IT IS YOU LOOK AT YOUR WATCH...TO KNOW WHAT YOUR BLOOD SUGAR IS YOU TEST...ESPECIALLY WHEN YOU HAVE HYPOGLYCEMIA UNAWARENESS.WHICH I HAVE.I CAN BE OVER 400 & NOT FEEL IT.

5

No need to yell....:)

6

I THINK SHOSHANA SHOULD GET A "PASS" ON YELLING, AS SHE'S ONE OF THE LONGER-TIMERS AROUND ACCORDING TO HER OTHER POSTS. WE SHOULD GIVE HER A BIG ROUND OF APPLAUSE FOR STOPPING BY AND INSPIRING US!

7

That's a good point too, I think there IS a limit on testing, as there's the "time" factor, or only so many hours in the day? At my peak, when I was working out twice/ day, running and lifting at lunch and another 1 or 2 hours of Tae Kwon Do, usually six times/ week, maybe a bike ride on my "day off...", I was averaging 17x/ day. That was pre-CGM and some of it was testing and then testing 20 minutes later, right before I'd work out, to make sure what my BG was doing at the time as there always seemed to be a chance that something would come up that would push it. At the same time, there wasn't really any reason I could think that I'd have needed to test more than that as I seemed to cover my bases ok at that maximum but I might have hit 20 a couple of times? I haven't run into any posts from people saying "I test every 37 minutes" though?

The only documentation of obsession is people being called that by CDEs, endos, insurance companies and occasionally posters bewitched by one of the previous 3 suspects into believing that testing is a bugbear. I don't understand a push to test less and run higher. The goal isn't a number of tests but testing is a path to control, no quotes needed.

All of us should be prepared to move our targets when we reach them and work to continuously improve things. I kind of picked that up studying Tae Kwon Do but it is very applicable to diabetes. It also is a relatively "low cost" leap of faith, try to test more, see what you can do. If you can't do it, you can still learn things about food, your body, the way astrological activity influences your BG, etc. with the addtional data you have obtained. There's no reason to stand any accusation of "obsession" to my mind, unless you are testing like > maybe 25 times/ day and I would also say that in some sort of unusual situation, 25 may be very appropriate?

8

IF YOU WANT TO KNOW WHAT TIME IT IS YOU LOOK AT YOUR WATCH...TO KNOW WHAT YOUR BLOOD SUGAR IS YOU TEST

That's about it in a nutshell shoshana. As someone said above, we at TuD are 'outliers'. We DO want to know what our BG is, and we DO use the info.

I met a man at a dog show with a pump, and tried to have a conversation with him. His response.. oh, I don't do anything, my doc adjusts it when I see him. What??? IMHO he's much more typical than we are, and insurance/medical folks tend to address the typical. So sad.

9

I test a lot, have a CGM, an A1 of 5.6 (up from 5.1, which is a victory) and a daughter in law who is so frightened of D that my access to my beautiful grandchildren is limited. (I do not turn into a monster. Actually people rarely notice when my BG drops.) I feel obsessed by D sometimes, and paranoia is a good explanation of how I feel--can I drive? What is my BG? How many carbs is in this? It is all the time/every hour/every day. It honestly depresses the H*LL out of me. Fifty years and still healthy, but it is a daily struggle.
I stay positive, but Stuarts question raises an awareness of the deep effect D has on us everyday--especially of we who are Tu Ds who understand and pay attention.

10

JRTPUP what do you mean by OUTLIERS?

11

Perhaps I pushed some buttons by using the word "obsession" which is the one used by some idiot doctors who don't understand what good control entails for a Type 1. I am not in any way shape or form suggesting less or minimal testing. I think the word obsession in the way I'm using it (see my description above) is when the person themselves is experiencing undue anxiety or stress, and diminishing returns from testing that is driven by this anxiety, not by the need to have information with which to make considered decisions. I think this situation is a small number of us, and certainly not the ones the doctors call "obsessed", but it does exist. I myself know I sometimes come close to that line and I recognize what it looks like for me, which may be different than the next person.

The OP asked "when does our vigilance become too much...something irrational...over the top? That was the question I was responding to.

12

Yeah, I sort of read between your lines, as I'm sort of aware of your background but I also have noted Stuart's posts for a while. He seems to have a sense of oppression although he also sort of does "drive by" posts and then leaves and doesn't respond until a couple of weeks later when he comes back. Which is ok, as he's not violating any "guidelines" or "rules" but I don't agree that there's a point at which there's too much testing. I'm also not entirely finding the "tags" really credible, in light of what members have reported.

I have seen zero members reporting "I am testing 40x/ day and keep running out of strips..." but lots going "I am having numbers all over the place but my doc only rx's 5 strips. I had to beg or he would have only written 4..." type of scenarios. I would think that with 20K members, we'd see a couple clinically diagnosable with a problem with overtesting and anxiety but I can't recall seeing any of them? The only people saying there's a "problem" with obsession are the "bad guys" on the other side. Which is almost eerie, given that people get obsessive about all sorts of stuff and, with the mental health implications of diabetes, one would think a few folks would understandably be going off the deep end. So where are they? Or am I it?

13

Maybe it's just you and me, AR..lol. Perhaps I am overestimating the number of people who "obsess" too much because I do it sometimes myself. I wasn't necessarily only talking only about people who are being treated for clinical Anxiety, but to some of us who at times cross that line.

I didn't recall anything about the OP but did think it was an interesting topic. But I also see your point and that of the others who are saying "doctors tell us we're obsessing and we shouldn't let them influence us" and also it's maybe more important for newbies reading for us to convey the importance of "test/don't guess" rather than talk about a small number of people like me who have the ability to drive themselves nuts! (For example, I don't want a CGM because I know myself and I would stare at the thing every two seconds and drive myself nuts seeing it bouncing up and down. I'm the same way about watches, I don't wear one because I'd look at it too much as in "what time is it?" "five minutes since you asked last!") But I still think CGM's are very valuable tools for most people.

But sure, I hear you that you don't agree there's a point at which there's too much testing. Perhaps I'm alone in thinking there is. I just find managing D in general a delicate balance between doing the work needed to have good control, and having a life that's inordinately focused on diabetes to the detriment of other things and to peace of mind..

...or maybe I just have too much time on my hands! LOL

14

I think it might be over the top if testing blood glucose is ALL you do and ALL you think about and your entire life is lived around your blood glucose measure. I don't leave the house without testing, I don't drive without testing, and I don't exercise without testing. I am also hypo unaware, but I don't let that little problem define me or my life. I am not paranoid, irrational, or worse.

15

I think that by "outliers" JRT means that people who are on top of their game with diabetes are the exception, rather than the rule, like a bell curve, with most people clustered in the middle? I had googled USA Average A1C a couple of years ago and I recall that it was something like 7.9? Not a horrible result but more than "normal" people. These days, something has changed and the search doesn't seem to work.

16

One problem with obsessive compulsive testing is the financial cost of testing. It’s a little easier to wash your hands 25-50 times a day when the cost is fairly insubstantial than it is to test your BG at about $1 a strip.

17

I remember reading an essay once that explored the difference between "having diabetes" and "being a diabetic".

There's a wide and wavy line there between being consumed by (and unnecessarily limited by) the idea of "being a diabetic" and just "having diabetes".

If diabetes gets so big that you can't see anything else but a big red D in front of your eyes morning, noon and night, perhaps it's time to re-evaluate?

On the other hand, if you try to push "having diabetes" so far down your list of priorities that you're testing three times per month, racking up a stack of double-digit A1C results and have to look at your feet to see if they're touching the ground or not, that's not good either!!!

As AR23 pointed out so eloquently, if you're actually USING the data to help manage your diabetes, then is there really such a thing as "too much testing"? when I had my first few bad hypos, I tested every five or ten minutes -- six or seven times in an hour -- just to reassure myself that 1) I was coming up; 2) I wasn't crashing again (i.e. no, I had not mixed up my Novolog and my Lantus); and 3) I didn't need to call for help. Was that "excessive" testing? For a seasoned person, sure. For me? No. It bought me the data and the reassurance I needed in that moment. Would I test that much if I had another hypo this evening? Probably not because I wouldn't need the data. I understand now how to treat a hypo and how/when to re-test to get the information I need to be well.

I think diabetic kids and their parents get into power struggles around testing because of different life experiences. As young people, we tend to think of ourselves as invincible. After a few HARD knocks (e.g. car wreck while inattentive, broken arm while skateboarding, death of a close friend via drunk driving, death of a beloved middle-aged smoker relative via lung cancer, rape of a dear-to-us co-worker on her late-night solo run, etc.) we tend to be more protective, more AWARE of our own mortality and the mortality of everyone we love.

Of course a parent wants to know the exact value of their beloved T1 child's BG every second of every day. They also want to know who they're with, what they're doing, the intentions of everyone they might encounter, etc. As the saying goes, when you bring a child into the world, you start "wearing your heart outside your body" -- the death or serious injury of that beloved child will HURT you. Badly. Part of parenting is, of course, learning to manage that concern and anxiety such that you don't smother the child but at the same time don't recklessly ignore their well-being.

Whether it's our own diabetes or the diabetes of someone we love, there will always be dynamic tension -- and disagreements -- about what is "too much" and what is "not enough". That's the nature of the beast.

18

Stuart -- This is a good question but as the other commenters note, not as simple to answer. For the most part, the people (insurers, some doctors) who want to limit BG testing have a stake in the outcome. Insurers want to spend less on strips and some doctors, influenced by reluctant patients, say 3-4 times per day is enough.

Zoe and Ar23 laid down some good observations about some diabetics that may cross the line with over-testing. This is a touchy subject for me. I especially don't suffer well the opinions of those living with a healthy pancreas. They have NO idea what it's like to walk in our shoes. AND they would be the first to second guess our failing to test when we crash and burn!

Using insulin is very tricky. Unless you have experience, you have no idea what we're up against. I say every insulin using diabetic needs to feel free to test as often as s/he darn well pleases! We're talking about life and death decisions here. Insulin can and does kill.

The biggest risk in this discussion is discouraging test strip use. The cost of a few truly "obsessive" test strip overusers is a small price to pay for saving even one life!

19

My diabetic mind of almost 30 years says : test when you ( ME/I ) need to test : sometimes very often ...as in the last few days , sometimes less...an average of 12 times .Costly YES , however I am still here at age 71 plus and have no known complications. Never had to visit the Hospital ER either because of D ...saved ( some ) a bundle there too .

20

But again, I’m pretty active and I don’t recall having seen any posts much above maybe 20-24 tests/ day which, to me, is a “no big deal” number, in terms of health care costs. Make “grey market” sales illegal if you want, and prosecute the sellers, but don’t come after me if you can’t prove I’m participating in that market.