I've been on this board for about a year and a half now and, like many of us, what has struck me is the wide variety of diabetic experiences represented here; the YMMV is one of our truest acronyms! But one thing in particular has struck me, and I've sort of drawn a conclusion that I'd be interested to hear if others share.
There is a current post that talks about I believe keeping fasting numbers between 90 and 95. I've even seen people post they try and keep their blood sugar between 90 and 95 (just picking that number as an example) all the time! When I read that I wonder, "how do they have that precise a control?" On the other end of the spectrum there are posts from people who have numbers on a regular basis spiking up into the 300s with no observable reason or even worse people who ping poing from extreme lows to extreme highs and have experienced both EMT type hypos and DKA level hypers multiple times. When I read that I feel a lot of compassion but I wouldn't be human if I didn't feel a tiny bit of relief it wasn't me.
Me, I'm somewhere in the middle. As I talked about in another thread, I'm currently experiencing a glitch of high numbers which I believe is attributable to my switch in basal brand and a needed dose adjustment. Aside from that I generally go along with morning numbers from 70 to 115, post prandials from 110 to 135. Periodically I have either too high or too low numbers, some of which I can explain, some of which seem totally random.
From the months of reading this board, I've come up with a theory that we can certainly do a lot to control our numbers: correct doses of insulin, (I'm focused mainly on insulin users in this question), lowering carbs, exercise and vigilence. But I also think that there is some kind of unknown factor that I just call "the luck of the draw". I have a couple friends who are on outdated insulin regimens, pay little attention to their diets and have decent A1Cs. I also know there are people on here who do everything to control their blood sugar and it's still a moving target. So it seems to me some of us have some unknown quality (genetic?) that gives us good management or keeps us struggling (what used to be called "brittle").
What I'm wondering is how great a part of the equation this "je ne sais pas" is. We all make choices in what we are able or willing to do to manage our diabetes and live our lives. I, for example eat moderate, not low carb for my own reasons, but I also totally believe in Bernstein's Law of Small Numbers. I absolutely respect the success people have attained with Bernstein. But what about those people who eat very low carb and still struggle?
What do you think? How much of our diabetes can we actually control and how much is "the luck of the draw"?
A lot of itâs going to be genetic, obviously. Everybodyâs body is different. But I also think there are things going on that we canât measure very well with the tools we have and the insurance we have. How much of a particular type 2 diabeticâs numbers are due to the number of carbs he or she eats? To the amount and kind of exercise she does? To the level of insulin resistance in her metabolically active fat cells? To her underlying level of beta cell destruction? There are a ton of variables that will vary from one person to the next. For a type 1 or LADA person, many of these things also play a role, plus other things like the level of vitamin D in the body, the ongoing autoimmune destruction . . . this is not to say that people should be fatalists about their care, but there is going to be some window that people fall into that circumscribes what is possible for them.
Thanks for your thoughtful reply, Frances. I think recognizing this variability can lead to an attitude of acceptance - not stopping working on managing our blood sugar, but letting go of the concept we can always control it perfectly. Jessica Bernstein who did the movie Blood and honey is very popular with many diabetics here in the Bay Area, and she says exactly that. âTotal control is a myth - and a potentially harmful oneâ.
You make a good point about the inability to measure (or even observe!) certain variables. I find this topic interesting.
Itâs precisely because of the many variables we canât control, or even know, that I do what I can to control those I can. Perfection, total controlânah. I donât feel near capable of duplicating what a normal pancreas does naturally. Chasing a rainbow.
I eat very low carb & struggle due to gastroparesis. I shudder to think how much harder this would be if I wasnât.
Many, many unknown factors at play. I often feel my biochemistry changes daily & maybe it does.
That makes sense, Gerri. Youâre a good person to ask because you do all that. What percent of the time would you say your numbers are out of range? (I believe your targets are under 100 fasting and under 120 post)?
I guess with this question I was looking to understand if there is something genetic or inherent that makes some people have difficulty despite working hard and some do well hardly working! Perhaps itâs not one thing but a combination of things as both Gerri and Frances seem to be saying.
I wouldnât necessary call it âluck of the drawâ (well, maybe "luck of your BODYâS draw) but it is that this disease is so complex - they canât even figure out the myriad of issues that causes it. This is why everyone is so different with treatments and food.
When you say âkeep their blood sugar between 90 and 95 (just picking that number as an example) all the time!â I assuming you mean fasting numbers right? Because not even a non-diabetic has numbers like that all the time - when they eat they go up past 100 but they go down to normal in 2 hours which we donât.
It is just like those stories you hear that some people say they were in âcontrolâ and had âgood numbersâ and they still got complications. Well, what is considered âcontrolâ or âgood numbersâ to them might be high or out of control to many of us on here. They donât mention what their numbers were and if they do they are at numbers like 180 (which some drs think are OK numbers to have on a regular basis) - so should I be nervous that I really do have good control and good numbers the majority of the time that I still might have complications? Probably not. I would like to keep the belief that if I manage this and donât neglect it and try to keep numbers under 140 majority of the time that I will be fine. But being new, I admit those are scarey stories. But what else can I do but do my best to control this for myself and not tryto compare myself to others too often because this disease is too complex, indiviualistic and random to do that with.
Keep in mind too - some people have a lot of other health problems that maybe they dontâ disclose on here - these need to be taken into account too since Diabetes effects all our systems. So I try to keep that in mind when I read what people say on here and I end up thinking about how it might relate to me.
I often do notice that some people who come on here who talk about their really high numbers often do not tell you what they eat or even sometimes if they aren to doing their treatment. So I keep that in mind too.
The post I mentioned was referring to fasting numbers between 90 and 95 (even that seems very stable to many of us!) but I do recall reading posts of people who keep their numbers in that tight a control all the time. Most of us only test and record numbers two hours after eating, so those people might spike a tad higher before coming back down. I agree that there are many people who report either very stable or very unstable numbers who donât include every detail of their management or lack thereof, and people who use general terms like âgood controlâ without us knowing how they define that. So for purposes of my own concerns and goals I donât let anecdotal info sway me too much. There are too many variables, some of which might be known.
I was just theorizing and thinking out loud, wondering about the relative impact of things we do to manage as well as some inponderable other factor that seems to be at work when we hear of people who do everything right and still struggle, and people who do very little and have good results.
I also wonder if there is a type 1 and type 2 difference. When I was managed as a type 2 I took my meds and made no other changes; I ate healthy but as a vegetarian fairly high carb and I had very little exercise. My numbers were very stable, maybe not 5 points stable, but NEVER out of target range! I know it is harder to maintain type 2 without meds and those people work very hard. But I wonder if type 1 is inherently less stable, and perhaps LADA even less so as the pancreas functions in fits and starts for awhile.
Well I am going through this right now. I I just went to the Dr yesterday and had a A1C of 5.2. Ok great. I put a lot of work into getting it there too. Monastic at times to be sure. Thats an average blood sugar of around 108 by Dr Bâs method. I am a T-2 and a follower of Dr B.
The problem is now I have noticed a change in the last month getting more sensitive to carbs than I have ever been. My log book refects this.
I have lost alot of weight and done all the things I am supposed to be doing. Have been having spikes above 200 post on some meals. I showed the Dr my log yesterday and he just glanced at it. Showed about as much interest in it as his staff at the front counter when they checked me in.
I asked for a small dose of mealtime insulin. I figured out my ratios and what I need and it is not much. As I am not insulin dependent I just need to give my pancreas a rest at times to prevent future beta cell damage when I know I am going into a social situation where I cant eat the best. This happens at times.
He said I would have to have an A1C of 7 in order for him to consider it. Told Dr my target goals at meals and it meant nothing he only looks at A1Câs. He accused me of being OCD and compulsive and to go ahead and eat the meals where I have problems and not worry so much.
So thats my control story delima. Right now I am kinda bummed out about diabetes. I know the hard work I have done and proud of it and want to do better. Its like the gym door is locked and they wont let you in for your work out.
This is right out of page 49 2nd paragraph of the Diabetes Solution.
How frustrating, Pauly! And how absolutely rude of him to say those things! Doctors love to call their patients ânon-compliantâ but then when they have one willing to be proactive in treating their condition they call them âcompulsiveâ. To me both those statements have more to do with how well you follow âdoctorâs fulesâ (and thus make them feel competent) and little to do with actually assisting the patient. Gee, and I thought doctorâs only said patronizing things like âdonât worry so much (dear)â to women!
I think your A1C is excellent and you should be very proud of the work you have done; but you are seeing a pattern of change that you want to address. This pattern may be because you are a misdiagnosed LADA, and it may not be. But you are no longer able to keep to the targets you want to achieve without starving yourself and that is a fact, no matter what the cause. My numbers started to rise like yours about 15 months after diagnosis and by 19 months I was breaking 400. I canât predict that will happen to you as I donât want to project my own experience onto yours, but you are certainly within rights to request more assistance in the form of insulin. I would make an appointment with an endo who will work with you as well as do testing to clarify type.
I agree that there are many factors at play. Certainly as a woman there are âfactorsâ in my health that are totally unpredictable. Add to that diabetes, and itâs anyoneâs guess what is going on sometimes. Itâs really not a game you can win. To me the aim is to struggle to stay as healthy as you can at any given time (which can be minute to minute). The idea, given my experience with this so far (T1 since June 2010), of laser focusing on blood sugar as something you can control really well just because you can test and correct it with insulin is rather misleading. I try to take things in stride and look at the overall picture of my health, one facet of which is the fact that I am insulin dependent.
Really the notion that we have tight control over ANYTHING in our lives is an illusion. We are given control over things sometimes, for a period of time, but then it evaporates and itâs very apparent that weâre not really a master of anything. It helps me mentally to take this more philosophical and âmacroâ approach. Otherwise for sure I think Iâd need to be locked up, assuming Iâd have the will to survive.
Does vitamin D play a role in blood sugar control?? I knew potassium did from my own personal experience of having hypokalemia after my diabetes diagnosis but never heard anything about vitamin DâŚ
I think we control what we can control. For some, that means trying to cover as many variables as we can given the tools at our disposal. I shoot for a target of 70 to 140 and can keep my BG there 70% of the time according to the logs I keep. The battles I really fight are fasting, premeal, two hour postmeal, and overnight. I test 10-15 times a day including 1 hour postmeal to catch as many high outliers as I can, but itâs more to have a complete data set, be ready to bolus for an unexpected high, and spot check overall control than it is to really do much else about it. Being able to set my basal rate really helps, but I still have too many variables to control completely. My high outliers still come at random times and with random BG.
So you were originally diagnosed as type 2?? How long were your numbers good on meds? And how did you come about getting a different diagnosis? Were you ever diet or exercise controlled? Iâm assuming you are now LADA.
I believe that genetics plays a substantial supporting role in how we respond to given therapies. But I also believe that there are psychological barriers that can throw a wrench into things. I used to have a terrible fear of going low. I would rather have seen a 110-120 than a 70-80. That led to over-treating lows (that werenât always lows) and a failure to bolus for slightly elevated bgs. Over the past 5 years, Iâve largely gotten over that fear, and have become comfortable with #s in the 70s and even 60s. My overall strategy didnât change a whole lot, but with a little more testing and more aggressive bolusing I went from A1cs in the 7s to the high 5s. My old program wasnât working, not because I wasnât putting in the effort, but because my mind was getting in the way of things:)
Today, Iâm pretty much right in the middle with you. I set broad but reasonable bg goals and do what I can, but over the years have come to accept that those small (and sometimes unknown) day-to-day variations can really hammer me at times. I also believe that Dr. Bâs approach is well-founded, but am not yet prepared to make that leap. There will probably be a day when Iâm ready but that day isnât today!
As you know Zoe, I am a vegan and I was one when I was DXâd and even though I am Type2 I still had to change my diet. No potatoes, pasta, rice, oatmeal or no bread (unless its low carb). It is probably a good thing since I ate way too much of that stuff. But I think it is individual. Some people whether Type 1 or 2 can eat high carb stuff but a lot of us canât and who to say if the people that can eat it are not making allowances for some higher numbers after they do - numbers which to some of us are too high to be considered âOKâ.
So that said, I donât necessary think there is a exact difference in just Type 1 and 2 - it is the person. I know some diabetics canât handle coffee - it makes their BG go up. Me, it seems to make it go down (boy, I hope that continues! Well, I drink decaf right now so could be caffeine in those others). Some diabetics canât have sugar alochols, I can.
I can eat small amount of pasta but it often isnât worth it. I get higher numbers often with that. So I just choose to avoid the higher carb stuff altogether. It isnât worth a high number for such a teeny morsel of food.
Type 1âs definatley have a bigger range of numbers than Type 2âs do. But I think for those who get the proper treatment and balance what they are doing they can have relatively stabler numbers. Sounds like Gerri does an awesome job with her Type1.
They are theorizing that a deficiency of Vitamin D could have a role in causing diabetes - not blood sugar control. So, if this theory is correct (which they donât know for sure yet just a theory as of now), than if you already have diabetes because of Vitamin D deficiency - well, not much you can do about it.
I have been taking D3 for several months and I donât notice a difference in my numbers.
Yes, LilMama, I was originally (mis) diagnosed as type 2. My numbers were good on meds for about 15 months and then they began a slow but steady climb. I never was controlled on just diet. My fasting blood sugar was 325 when I was first diagnosed and they put me right on oral meds. After awhile of watching the numbers rise I finally realized I probably needed insulin but didnât understand why it was happening so soon as I had understood that type 2âs could go for years or decades before needing insulin. I was living in Guatemala at the time so I just started doing my own research. By the time I went in to see an endo there I had a list of five things I knew meant I was LADA, and she just clicked each one off, confirming me as a type 1. (Sheâd never heard of LADA).The 5 things were: 40 pound weight loss before and after diagnosis, very low c-peptide, needing insulin so soon, insulin sensitivity and having thyroid disease as well. Yes, LADA is my correct diagnosis.
I knew Iâd probably get called on a generalization, KimKat. Sure there are individual differences, but I think it has some validity. One thing about carbs and type: remember that type 1âs have insulin to help process carbs. Would you be able to process the carbs in those items if you had insulin? Aside from being comfortable with higher doses (I would be terrified to take more than 5 units meal bolus unless I was starting with an extremely high blood sugar), the type 2âs I know seem eat things, bolus and have acceptable numbers that I couldnât.I do see more variability in blood sugars in general with type 1âs. But I think, as you say that itâs just one of many factors.
Good point, Tom, about the psychological variables! We all have some of those! Iâm also seeing how my attitudes are changing just in the year and a half Iâve been using insulin. After my doctor (treating me as a type 2) put me on too high a bolus dose and I had a scary low (I live alone and was unconscious, but my liver kicked in), I started out saying âno how no wayâ to bolus insulin altogether. I got over that pretty quickly, of course, but itâs still been a process. Iâm working on the letting go process. I have no problem with letting go a single unexplained high or low, but still think patterns have a meaning and something I need to changeâŚright away! Kind of a spiritual thing isnât it, accepting that the universe is, at times, completely random!
