I think what Spock was told was tailored to her body and her needs and for anyone to assume that this relates to their own self is wrong. Just my opinion.
I disagree. This is pretty standard info most endos and diabetic centers tell their type 1 patients regarding lows (the dangers) and A1C's, it's not individually specific. Most endos don't like lows for their patients or for their patients to push unhealthy A1C's in either direction.
In this case I disagree with you Sarah. What's great about DOIT is that each patient gets an individual workup with help in resolving the issues that she or he faces. Spock received advice related to her depression, burn-out, repeated severe lows, advancing age, etc.
If you went to DOIT you would get advice tailored to your own situation and it might or might not include advice not to correct a 160 except before meals. They might suggest a blood sugar target of 100 rather than the target that they suggested to Spock.
We're all different and there is no one size fits all and good endos and CDEs don't try to force all their patients into the same mold.
I do agree with your recent posts protesting the cult of the lowest possible A1c.
Maurie
A cult! I love it!!
I don't see it the same way as my goal isn't "the lowest A1C", it's to win every test, either by getting the number I'm aiming at or by doing a good job getting the number where I want it if it's not there. I find it easier to do this aiming at 85 fasting and 120 after meals. I don't remotely hit it all the time and I miss those targets a great deal of the time but I feel like I'm more likely to hit them if I'm aiming at them. I don't think I usually advocate having a low A1C however I have observed and sited some other folks reporting success (e.g. Clare and Sportster) doing that very thing. I believe (although the thread was while ago so my recollection is a bit fuzzy...) they seemed in agreement with my theory that by engaging with one's lows, they can become less hairy than the sort of devastating lows engendered by rollercoastering, rage bolusing and other, at least as reported here and on FB (I gave up on Twitter so I can't report anything recently there...), common practices. This is not intended in any way to say that this is the patients' fault because they are following their doctors' advice.
I totally understand that, as Sarah put it "This is pretty standard info most endos and diabetic centers tell their type 1 patients regarding lows (the dangers) and A1C's" but a problem isn't a low A1C, it's an individual low blood sugar that causes a problem. The way to make diabetes work is precision, the best data and the smallest incremental adjustments you can pull off. Even when I was on MDI, and eating much more dirtily than I do now, I would think "hmmm, that bacon cheeseburger is pretty hairy, I'd better give it the tip of the meniscus [on the syringe line, instead of splitting the difference. These days, I don't know if I could see the line without a magnifying glass...argh!]. My recent and, seemingly, successful experiment splitting the difference in my basal rates seem to suggest that increasing my level of precision has benefits. Or maybe it's psychosomatic and I'm delusional? I won't find out until April. I can report that I am hitting way less glucose and insulin "nudges" to stay on course, which was the overalll goal of blowing 1/2 hour going through and reprogramming every 1/2 hour on my pump...
I appreciate Maurie's comments as I know he's a veteran of the program and I am glad to hear that the clinic uses individualized approaches. Not being a doctor or anything, I can see that 85 might not be a realistic target for many people or kids or whatever. My goal isn't the number, it's to improve my life. Since I got more engaged with that in 2005 and more intensely in 2007 (through Tae Kwon Do, but it definitely fed into diabetes management...) I have found ways to do that through finding the DOC, through pumping, through CGM, through running, through eating more vegetables, etc. As I learned more about what seems to go on in my body and benefits I've found from trying to put as much precision into managing diabetes as I can, it's been useful for some of my other adventures that turn everything precise upside down and shake it up.
What I don't like is when doctors, in selling the "raise your A1C" cult make stuff up and I do not find the psychologist's account of PWD with lower BG having more amputations because of accidents to be credible, more based on my experiences as a claims adjuster than on anything I've perceived about diabetes. I will bet him $5 *or* a $100 donation to a diabetes organization (winner's choice!) that he can't produce evidence of that. I would accept more heart attacks and am intrigued by the possibility of brain damage although I haven't really seen anyone sharing evidence of those either, it seems as if they are boogiemen designed to make us behave ourselves. I totally understand that hypos are dangerous because they make you pass out. That's plenty of reason to work to avoid them.
"I totally understand that hypos are dangerous because they make you pass out. That's plenty of reason to work to avoid them.
" Totally agree acid.
I applaud Spock for sharing which was an individualized treatment plan for her and helped her to manage her tendencies to want to overcorrect and the resultant crashout lows. So glad she has found that Joslin has helped her so much!!
I also do understand that those of us who do not have disabling lows and hypo unawareness may be a bit thinking that it works this way for most type ones. Maybe not. My silliness and shakiness but Nowhere close to a "on the floor eyes closed" syndrome, at 44; is quite different from someone who is passed out disabled at a similar BG level. I can see why some doctors advocate a higher level of blood sugars for such people, because they are in danger. Hope every one has a splendid weekend.
God bless,
Brunetta
I am pleased that Spock is really getting some useful help from her team up at Joslin. I do think that we often have great difficultly making good risk judgements in our lives. And this is beyond the stupid "guy stuff" that my wife likes to point out. We often don't properly understand our daily risks and make balanced judgements. And making a personal decision about balancing tight to blood sugar control against hypos is one of those areas where we can have trouble. Some of us fear hypos so much that we routinely keep our blood sugar high. But in my case, I am the opposite. I strive for tight control but I also try to have a healthy respect for hypos. And it sounds like this is a huge message that Spock has gotten from Joslin. And perhaps this will allow her to achieve a much better balance in her life, greatly reducing hypos while still keeping some good level of which keeps complications at bay.
ps. That being said, I have encountered many instances where doctors or educators have tried to "scare me straight." And this has involved quoting things to me which are not exactly true or exaggerations of the evidence. The DCCT really didn't have much to say about blood sugars less than an HbA1c of 7% and we have even less evidence about of HbA1cs of less than 6%. And despite my never having seen the study results that Spock was told, I believe the message certainly true, we need respect the risks of hypos.
Maurie is absolutely correct. There were 7 of us in this group: three T2s and four T1s. Of the T1s, the years since diagnosis were 12, 23, 25 and 50, so not a group of newbies. Additionally attending DO IT is a real commitment and very costly (I had travel and hotels, meals on top of the program cost.) Based on the people in this group, attendance is not undertaken lightly. Something has broken and needs to be fixed, at least in this one.
We had a team: Endo who spent 3 hours individually with each of us over the four days. There was also a registered dietician, two very good CDE, a exercise physiologist and a psychologist, so 6 professionals to 7 patients. The medical team met twice each day for "rounds" and went over all our data, etc to help work up a plan. Classes start at 7:00 AM and end around 4:00 PM. This was the most comprehensive overview of my health and well being I have ever had. Oh, and for the next few weeks they will check in with me weekly and I can contact them with questions for six months. This was no 15 minute endo visit.
I will receive an outline from the nutritionist, exercise physiologist, and the endo. Additionally the results of the myriad of tests (3 pages) that were run are forwarded to my PCP and endo at home detailing their findings and suggested course of action.
Maurie is also very correct about the individuality of this program. I have, honestly, been a low A1C junkie, at 62, trying to keep my A1C as low as possible. Hard as I tried, I was never able to flatline my BG readings, so there were lots of hills and valleys and some of the valleys were pretty deep. Keep in mind that an A1C of 5.1 means the average BG averages around 100. That would be great is it was always 100, but it wasn't, meaning I was low--under 60-- quite a bit. I also admit a lot of OCD and burnout.
And I will share one last thing. Know what opened my eyes completely? My husband and I had been on vacation in France for three weeks and I had really struggled with highs. One afternoon, I had actually gotten to about 150 for the first time in a while, check 2 hours later (no food) and was 265. I lost it and broke down completely. Then I looked over and saw my husband was crying. I knew I had to do something--for both of us. DO IT is what I am trying.
AR -
I like your emphasis on making choices that you feel improve your life. That should be the standard for all of us. The issue of confusion, falls, and other mishaps becomes more dangerous as we get older. I'm Spock's age and I can tell you that my reaction time isn't what is was and that even a very mild low (high 60s) on occasion might lead to an accident. It would more likely be a fender bender than anything else but still. On top of that diabetes is an intellectually demanding disease. Even a slight age related decline might make it too difficult to balance all the factors we now take into account successfully.
I don't think setting a target of 85, or eating only 70 carbs a day is a problem if it works for the individual but neither of those approaches would work for me and that's the point. Each of us has to find our own way.
I also think the issue of falls which we all will probably face if we make it (through good control) into our 80s is very real. A fall that leads to a stay in the hospital or rehab or a nursing home is one of the major risks to our health and quality of life as we age.
Maurie
I think, for better or worse, this has become almost two separate threads: Our response to Spock's situation and Spock's experience, and then the rest of us, as Shawnmarie says, seeing Joslin's info through our own personal lenses. My understanding is that Spock went to Joslin due to her problems with extreme lows and she has received tremendous information and support there that has helped her both pragmatically and emotionally to better manage her D. And she's been kind enough to share her experience and her excitement with us.
The rest of us, unfortunately, got stuck on the information we heard (second hand) from Joslin. We've all heard ad nauseum that low A1C's are dangerous because they involve many dangerous lows, and we all know (from experience) that low A1C's can be achieved without frequent dangerous lows. We heard that "people who are consistently under 180 have more serious car accidents (and amputations) due to lows" which again has the logical fallacy that if you are "consistently under 180" (which I would assume the vast majority of us strive for!) you will have lots of lows, as well as we will be unaware of those lows and will drive and cause accidents. Once you get to "low A1C's are all bad and dangerous" it's a hop, skip and a jump to "you should (purposely?) maintain higher blood sugars. For someone who has frequent dangerous lows (as opposed to run of the mill occasional pop 2 glucose tabs and get on with your day lows) and perhaps overcorrects highs and goes low yes, allowing higher blood sugars might be appropriate. For those of us who successfully maintain low A1C's without frequent lows, it wouldn't. And it pushes our buttons to hear this from our doctors when we are working so hard and doing so well! Our doctors seem to be obsessed with avoiding lows, while we are obsessed with a happy medium, without too many lows or highs.
Two different threads. As for "trying for A1C's in the 5's" I have to comment that I don't really "try for" any particular number, though I was delighted when my last A1C was 5.9. I basically did the same things when my A1C was 6.7 as when it was 5.7. It just worked out better in the latter case. We all find our balance in carb eating, correcting, tweaking doses, exercise, testing, use of cgm, etc. And if our overall balance gets off in some direction for some reason, we correct it.
Wow Spock, this is an awesome story! It sounds like a fantastic place and it's too bad that it's so pricey because I'm sure all of us could benefit from an intensely focused approach like that. I can see being a low junkie too. I have read bunches, maybe all, of William S. Burroughs sort of creepy novels and generally read them replacing heroin with insulin since, when I was whackier, I'd had a few lows that produced ****CRAZY**** hallucinations (which is, of course, not good, something I work avoid all the time these days!). Sort of getting into a me vs. everyone thing, being very furtive, etc. I'm sure the psychiatrist would have a field day with me...
It is awesome that you are able to do this to sort of unplug from what you are doing before and get to a place where you can relax and rest on your laurels as a Joslin Medalist.
Well said although I would agree with Shawnmarie's assertion that my lens is extreme.
I agree with Zoe that there are two threads here. I am pleased for Spock, it is always pleasing when those I know of are able to solve the pressing issues of their lives. My spouse, too, was in tears over the effects of following the ADA diet for only 6 weeks. If this discussion shows anything, it is that there is no Tao of Diabetes. At this stage of my diabetes, only my tenth month, I see that my numbers are quite low, based on 8 consistent readings everyday, as is my standard deviation. I do not pursue a low HgbA1C because I do not have enough control of my insulin. Perhaps this is fortunate. I am not chasing an abstraction. However, my numbers, my T1 regimen, is based on the fact that I do not get hungry. I am the one who can work through a meal or two without noticing it. That is why I can be a hunger artist. As a result, it is nothing for me to eat only Bernstein's 30 CHO/day. And now, because of my diabetes, I actually know how much food I need. I never knew that before. And now I am stuck, how or why would I eat more than I need? There must be others here who do not get hungry. This is another Way on the spectrum of T1 control that, I believe, puts low numbers in a different light.
I rarely get hungry, hungerartist, though I don't skip meals. I've never had the symptom of extreme hunger many describe with lows, and I don't overeat. (But I should say the last part comes from having 19 years recovery from an eating disorder). I also get full pretty easily and find my food needs pretty modest at this point in my life (I'll be 65 this month). I choose not to eat Bernstein's for other reasons, though (being a vegetarian and a foodie).
I don't find it credible either and I'm not really sure what they mean- what caused the amputation? An injury or having diabetes/infection etc. Otherwise they are totally unrelated events if it isn't caused by some sort of infection. I had 3 car accidents, none of them my fault and I was hit by a car, not my fault, all before D and no accidents after D, knock on wood. Even though I suffer lows, I'm very careful when driving. In addition, higher A1c doesn't mean you're not going to have lows and bad lows. Not knocking your advice Spock and I'm glad this is helping you, just questioning this aspect of what was said.
I rarely forget meals since I was diagnosed. There is the memory of going into the 50's once when I did. I was moving small boulders around on my property and my wife was away. Going with Bernstein did require a change in attitude. I had been consciously reducing the amount of meat I ate as I got older (67) but now I feel forced into the circle of life and I offer thanksgiving to the beasts of the earth everyday.I do search for ethically raised animals.
i also low-ish carb, about 85 or 100 a day. i am rarely hungry. being naturally hungry actually feels really good, really CLEAN, when i compare it to a hypo hunger.
i dont have my eyes on the (a1c) prize either in my day to day, but just take one reading at a time.
Spock, do you have information regarding this program. Is it typically covered by insurance. I'd be very interested in this. I love the approach and it sounds like a lot of information was given, as well as specialized care, etc...THANKS!
We all do what we feel is best for our bodies and treatment. This is a very tough, time consuming, exhausting frickin disease. We all just do our best, I suppose. However, I just do not see how a type 1 can get an A1C in the 4's or even low 5's, unless they're maybe still honeymooning, still producing some insulin, glucagon..or they're just constantly constantly injecting and correcting either way.
Hi Sarah -
The bulk of the program can be covered by insurance. The travel cost and the cost of meals during the program is on your dime.
Maurie
Yes, type 1 is always individual, every one of us has different insulin needs, etc...but the 'fear of lows', however, seems somewhat universal within the endo/D team community. Rightfully so I suppose. We, on here, take a lot of care in managing our D. I'm rather OCDiabetes myself. But, can you imagine what some of these centers see, both from complications and lows and DKA. Type 1 has no preference, it hits whomever, whenever...some might simply not have the capacity to grasp this all consuming insulin management regime, ya know. Frankly, I'd hate being an Endo..I'b be nervous too if I had patients with a lot of lows, just sayin'. I know what they feel like, they mess me up, my brain, sometimes pretty badly. My endo had to hospitalize a type 1 because his blood sugars were so low and he wouldn't come out of it - brain wouldn't click back in. This stuff DOES happen.
but the thing is, we're all getting older...that's my point. for me anyway, i'm very nervous about not feeling my hypos as I age and become less aware just due to age, happens to the best of us..:) Although I hate hypos, I do want to feel every shake, sweat, weird brain fog feeling so I know to correct.