Seventy to one-eighty -- don't patronize me

[Terry4]

@Laddie

I do know that my mental health is better with a high TIR of 70-180 than a lower TIR of 70-120 or 70-150.

I respect that, @Laddie. Quality of life and the ability to individually choose which target range provides the best balance between healthy glycemia and good mental health and quality of life is an individual choice.

There are many tactics and regimens that we as people who dose insulin to enable daily life may select from the menu. I guess what bothers me is the more aggressive choice is not even on the menu.

I need to be content with the fact that the traditional diabetes organizations will not likely provide the acknowledgement I seek. That is OK. Some things change slowly but they do change.

Both the American Diabetes Association and more recently, the American Heart Association have recognized a reduced carb eating pattern as one of the legitimate choices for patients to make.

Thank-you for weighing in here, Laddie. I also appreciate our friendship.

@Uff_Da, you describe well your unique circumstance of someone diagnosed much later in life than most of us. You have thoughtfully made choices regarding the quality of life and the demands of managing diabetes. I respect those choices.

@Marilyn6

At this point I am thankful for every day that I am alive.

Gratitude is a healthy sentiment. Thanks for the reminder!

@Uff_Da

As of tonight by the last 30 days report I’m sitting at less than 1 percent very high, 3 percent high, less than 1 percent very low, 3 percent low.

I think these numbers should calm your doctor. With less than 1% very low (<54), that’s less than an average 14 minutes per day and some of that is made up of sensor errors. I’ll be curious to read if this new-to-you doctor accepts the < 5% low and <1% very low in your case or if he may encourage even less time in these ranges due to your age.

You appear comfortable with your current management and that should count for something!

[Marilyn6]

Terry, can you please send me a link from the American Heart Association which says that a very low carb diet is good for type 1 diabetics once weight is lost?

I like to remind people on very low carb diets to make sure that their LDL numbers don’t rise while eating diets with very low carbs. My cardiologist is convinced that is why I suddenly needed stents. My HDL was almost 100 and my triglycerides were about 36, but my LDL was close to 200. Dr Bernstein does wonderfully on his diet, but his LDL didn’t rise.

[Terry4]

@Marilyn6 – My reference to the AHA recognizing a low carbohydrate eating pattern is legitimate for heart health is a study on T2Ds. Sorry I didn’t make this clear earlier.

Here’s the paper (March 1, 2022, Circulation) I referenced and the pertinent paragraph.

The Mediterranean, Paleolithic, low-carbohydrate, high-protein, vegetarian, and nut-enriched diets have demonstrated benefits on glycemic control and weight loss in T2D, with the Mediterranean diet producing the greatest improvements in glycemic con-trol and a 29% CVD reduction over 4.8 years.55–60 Very low–energy diets can lower A1c, BMI, cholesterol, and B P.61,62 Very low–carbohydrate versus moderate carbohy-drate diets yield a greater decrease in A1c, more weight loss and use of fewer diabetes medications in individuals with diabetes.63–65 For those who are unable to adhere to a calorie-restricted diet, a low-carbohydrate diet reduces A1c and triglycerides.63–65 Very low–carbohydrate diets were effective in reducing A1c over shorter time periods (<6 months) with less differences in interventions ≥12 months.65a–65d For individuals using very low–carbohydrate dietary approaches, it is important for health care profes-sionals to maintain medical oversight and adjust diabetes medications to prevent hypoglycemia.20 Overall, weight loss of 5% to 10% is associated with A1c reductions of 0.6% to 1.0% and reduced diabetes medications.66 Thus, the ADA recommends an individualized nutrition plan fo-cusing on total calorie and metabolic goals, using a medi-cal nutrition program as needed to achieve goals.

[Uff_Da]

@Marie20 - It happened again this morning. Had to start a new sensor and it started at a BG of 42. An actual blood test showed 89. I did an immediate calibration, which I don’t like to do, but I was about to go back to bed for a two-hour nap and didn’t want it to show an extended period of low that wasn’t real. A calibration on the Dexcom6 just splits the difference so I still showed in hypo range, though. I considered doing a second calibration right away, but waited several more minutes and the CGM moved up enough to be within a reasonable amount over 70. I awoke from my nap with my Dexcom reading 70 and another blood test at 91. Second calibration. But at least the record won’t show low.

I’ll just do the record keeping the PCP wants until our next meeting, then see how much he wants beyond then and why. I already have to take and record two blood pressure readings a day and analyze the months results at my own initiative - to keep the doctors from overdosing me into zombieland due to my extreme highs and lows (as low as 77/43, which they would never see in the office). So in reality it is the total amount of record keeping I’ll be doing for all of my health care that really concerns me.

Edited to add: Oh <bleep!> It is now after lunch. I thought it was rather strange that my BG on my CGM showed going down to 60 after a lunch of a chicken taco salad. A blood test showed 173 instead. Guess I’m going to have more explaining to do.

[Marilyn6]

Wow, the Mediterranean diet was great for type 2’s. I’ve considered eating this way, but the low fat plant based diet keeps my insulin resistance so terribly low.
I wish they would come out with a study about type 1’s.

[artwoman]

As I’ve read through the various responses and reactions, Yeah, I get it - we are all different and our goals are different. But I also relate to Terry’s statements about not wanting to be patronized. One of my biggest beefs stems from a low opinion of patients (especially those with D) on the part of health care providers. Aside from “blame the patient” if a therapy or regimen isn’t successful, there is (from my experience) an approach or belief that if a person is Dx’d with D (of any type) the patient MUST also be Dx’d with 3 co-morbidities: stupidity, laziness and a propensity to lie (especially about what was eaten).

I’ve had Endo’s, who upon meeting me for the first time - have said (and I quote because I will never forget) “It is impossible for someone like you to have such good labs”, they questioned by 15-20 fingersticks a day (asking me why). The chief of the Endo Dept I have to use due to HMO health plan challenged my interest in being engaged and proactive. I explained that checked the bg so often citing the usual times (upon rising, before and after every meal) before and after - at least - exercise, and before bed. I also told him I checked when I got behind the steering wheel. He was particularly “concerned” about the pre-driving check. Sop I asked him how many times during his rotation in the Emergency Dept he accompanied first responders to a car accident caused by an impaired driver. He never had. I told him I lost count. And I said that driving without knowing my bg set me up to be an impaired driver. That sort of shut him up.

He then moved on to the impossibility of my mid-5’s A1C’s. He said it was impossible (again for someone like me) to achieve them without lots of major lows offsetting major highs. That’s when I whipped out the hard copies of my Dexcom reports. I was paying out of pocket for my Dexcom (I had been CGM’ing for several years and the new health plan didn’t cover it). Again, I silenced him.

At the end of the appt I suggested he get to know patients first, learn to celebrate their successes. I also offered to bring the Mensa card to the next appt (there wasn’t a next appt, I refused to see him again). And…to be honest it was my mother’s Mensa card. If I held it just right, you’d only see the last name. Eventually, I shared my experience with the Endo Chief with my current Endo. He was appropriately shocked and understood my feeling offended.

We are all different, and some of us need to be as tightly managed as we choose to be. I was born with poor kidney function, Dx’d with T1D at 30 years old. I am very motivated to try for as near normie labs as possible.

[pstud123]

(post deleted by author)

[PattiM]

I’ve been diabetic for 48 years and for me personally, non-diabetic persons’ AIC and blood sugar numbers in their range are not realistic for me. I spend quite a bit of time trying to manage this condition as it is. Both the pump, which I got in 2009 and the Dexcom, which I’m in my 3rd year of using have helped tremendously, but there are so many things that affect my blood sugars that I cannot control. For example, if an idiot on the highway lurches into my lane and almost crashes into me and I can barely avoid an accident by swerving into the lane on my other side, my blood sugar spikes because of adrenalin. That spike will be insulin resistant. Another personal issue I have is that my infusion sets don’t always work effectively and my numbers climb. I have tried everything I can to choose good spots and to get the darn things in without bending them, but even the metal ones often fail me. I’ve read as many accounts as I can find on the strategies other diabetics have used and some have helped a lot, but nothing is 100%. Again out of my control. So, as much as I’d love to be in a non-diabetic range, it’s not achievable for me. I strive to do the best I can and after 48 years have no side affects. I realized a long time ago that I have to live my life and accept what I can’t change.

[TomH1]

I love your sentiment and logic! Thanks for writing this!

[pstud123]

70 to 180, 75 percent of the time is not “non-diabetic”. It’s an aspirational goal for glucose management for most people who have diabetes - it’s not good management, just better than none.

The more recent guidelines decrease that time and raise the high end of the range for “elders”. I challenged my doctor trying to use that for me because at age 75 with a mother who’s still alive at 95 I do not consider myself a person incapable of using current technology. They resisted until I proved it to them with consistent A1cs in the low 5’s and no hypo - without their support.

What he said is that the relaxed guidelines are relaxed in a direction to provide more safety for the patient. They are a balance of long-term consequences against increased short-term risk and consider that as one goes gets older you’re more likely to be dealing with multiple health issues not just diabetes and it’s consequences.

Imo That’s cookbook epidemiology, statistics, not medicine . No one who can delay illness and death should be ever encouraged by a doctor to be less healthy “for safety”; they should be educated in best self-management practices. Unfortunately few doctors know what those are, so they follow “guidelines” based on opinions, not practice, and outlier patients’ practices and experience are ignored as “unqualified”. That forget that experiments and observation, not statistical studies, is the basis of modern medicine.

[jean63]

So my two cents worth here. I am 67 and when I went to my endo. they said my a1c of 7 was fine for my age! They don’t want us seniors running low because of the risk of falling and having heart issues.
Also, a few years back, there was a big study, that stated lower A1C’S and very intensive insulin control over the years did not improve outcomes. I think it may have actually shown an increased mortality. Sorry, I wish I knew the name of the darn study but the docs are always quoting it. This is why many do not want their patients to strive for non diabetic A1c’s. I suppose if that’s what you want for a personal goal, that’s your business.
All this said (LOL) I get upset when my BS are over 150. Even at my age, I worry damage is being done. It’s obviously a controversial topic with lots of opinions.

[MBW]

This is a really good discussion!

I don’t think that there’s any argument against the idea that having a CGM allows you to target a lower blood glucose. If the fear of the unrecognized hypo is alleviated, you can sleep with lower numbers, target carbs more aggressively, and treat the occasional (or even non-occasional) lowering trend with a judicious amount of sugar.

Having a pump that can autobolus and routinely lowers, suspends, or increases basal rate based upon trend of glucose and predictions only strengthens the argument FOR being more aggressive toward normoglycemia.

Knowledge is power. I think for such individuals, a more challenging target is entirely achievable.

[CharlotteEngland]

This is a tricky point to make when i know there are people round the world who struggle to get the most basic of diabetes care and i write it knowing full well how lucky we are to have the NHS.

Notwithstanding that, here in England it’s not terribly easy to get diabetes tech which helps hugely in hitting targets, be they set by the Associations or, when that goal is hit, one that you have set yourself. Of course, we have access to blood glucose meters, but even strips can be rationed.
I was lucky enough to get a pump when i was planning pregnancy, but i was warned that it was quite possible i would have to hand it back after my daughter was born (it would’ve been a bloody fight, i can tell you).
I have the Libre, because i qualified due to doing in excess of (i think) 10 tests per day.
But i can’t afford a CGM and my dreams of looping remain just that.
I say this knowing I am extremely fortunate to have the NHS; I have received great care (mostly) and, apart from through taxes, i haven’t had to pay for any of it. I’m lucky. But I really feel without the tech that some of you have, the targets you strive for and achieve are way out of my league.

[Terry4]

I thank all who contributed to this thread. Your responses are thoughtful and represent the spectrum of management strategy that we use.

But I’m a bit puzzled at the reluctance to acknowledge that another layer of goals could be recognized by the medical ranks. To me, if the professionals who set standards could recognize that some in the diabetic population are capable of normal glucose while limiting the time in Stage Two hypo (< 54mg/dL) to less than 1%. That population, however small it may be, also deserve the support of the medical standards infrastructure.

I understand that people can decide that the current standard targets are appropriate for them, especially since it allows for important quality of life and emotional health goals. But, why resist a professional standard that acknowledges (not requires!) better performance for those who can?

I don’t expect that these standards will soon move to my sense of values here. I can’t even muster a consensus on one small diabetes forum, much less a standards committee.

I don’t trust the aggregate “wisdom” of the medical professionals as I’ve personally witnessed in my 38 years of living with this disease medical advice that has not aged well.

No one is forcing me to perform to a lower standard. I pick my goals myself and my doctor reviews my performance four time per year. He can clearly see that I can consistently limit the < 54 mg/dL hypos to less than 1%.

My latest 14-day report shows that the more severe hypo category (<54) weighs in at 0.5% or an average of seven minutes per day. My time in range (65-120) rests at 89% or 21.4 hours each day. Low glucose variability, with a standard deviation of < 20 mg/dL, is the key metric to make this work.

Does my proposal take something away from the main population? I don’t get it. What I seek is a broadening of the standard to accommodate people like me.

This, of course, is a rhetorical question that has no answer. But, I firmly believe, that it is these kind of questions that have propelled medical practice to evolve to more modern and better standards.

[Timothy]

Doctors go by studies and sometimes outdated information.

The current sentiment is that keeping our a1c below 7 is good to prevent diabetes complications. And that lower a1c don’t definitely give a better outcome than below 7.

I think that a near normal or normal a1c is just common sense if you can achieve it.

At some point the risks outweighs the potential benefits of lowering a1c. When we age we lose some of out ability to feel lower sugars and therefore are at higher risk of dying from a low.

So they make these rules as a guideline that will include the entire population because simply on average, you will live a healthier less complicated life if you get your a1c under 7.

I am very happy in the mid to high 5 range. And my TIR is around 90%. I have a pump and dexcom which helps me get there.

My doctor does not harass me about a low a1c but she does warn me about lows, and suggests 2% of all data is the most one should accept for low readings.

If I’m fewer than 2% low, then I’m in the green zone. If higher, then she tells me to target a bit higher.

Most importantly we talk about what I want and where I want to be, not just a line in the sand that determined by a few studies.

[MM1]

@Timothy

At some point the risks outweighs the potential benefits of lowering a1c.

I agree that’s reasonable for those without complications. After 58+ years T1D, I have several, and strive for A1Cs in 5-6 range, which is attainable safely with cgm and tandem pump for me.

Everyone should consider what’s right for them.

A newly diagnosed person that average A1C of 7 most likely will not have complications, if maintained throughout their lifetime. But can also strive for lower, if can maintain safety from lows.

One concern is possible accidents or deaths to self or others if having too many lows trying to stay in lower range.
Having latest tech can help reduce this risk.

[Marilyn6]

At 71 and having had diabetes for 63 yrs, I still feel all of my lows. Why do I always read that older diabetics lose the ability to feel lows?

[mohe0001]

I don’t know how much increase in ‘quality of life,’ or ‘decreased risk of complications,’ I would see, in reality, from that small of a shift closer to ‘perfection.’ I’m far less ‘hard on myself,’ about those numbers than you are, Terry. You set high standards for yourself, and that’s OK, as long as it doesn’t make you feel bad. You do a good job.

[pstud123]

I’m skeptical about any doctor talking about outcomes or “cofactors” and using that to justify a diabetes protocol for me, a customer with a chronic disease that is not immediately life threatening. Even if that doctor had the same form and degree of diabetes as I have, his experience will not be the same as mine.

Because I know that my life and experience with diabetes has not been typical I’m reluctant to give specific advice about how to live, only about how to deal with very specific problems and tools that can be helpful. I share my personal experience only as an illustration of problems that I have had or do I ask for other people’s experience with the same specific issue.

When asked for advice I usually suggest that the person except responsibility for learning more and be willing to do careful experimentation. My opinions usually focus on negative aspects because those are what cause problems. ( I like problems because problems can be solved. I dislike trouble because trouble is difficult to translate into problems.)

The following is a long rant that you can safely ignore if you’re not interested in knowing how to interpret a doctor’s advice.

Some scientists are medical doctors. Few medical doctors are scientists. Fewer medical doctors understand the limitations of statistics and when they are irrelevant to an individual.

There’s never been an investigation of outcomes and quality of life for individuals with nontrival specific combinations of multiple health factors, just retrospective analyses, correlations and statistical evidence that apply only to populations. These may be useful for public policy and directing research, but not for any individual.

No person has a percentage probability of an outcome, that concept is nonsense. It indicates a basic failure to understand what statistics and probability are.

A drug that works 70 percent of the time will fail 100 percent of the time for 30 percent of a large number people who might have benefited from it.

Ten people taking a drug with a 10% probability of positive outcome may result in none of them having that outcome, or all ten. No person can take that drug ten times and have it work once. It works or not

Something works twice as often as something else is meaningless without context. If the first thing works 2% of the time compared to doing nothing, 3% of the time is still insignificant.

Any drug or medical procedure that does not work at least half the time is a medical “Hail Mary”. If it works more than 70% of the time it becomes standard practice. Ninety percent is Gold Standard. In comparison, no licensed professional engineer could survive in that profession if what he did outside of experimentation worked less than 99% of the time, and he’d be in serious jeopardy for the other one percent.

A person can follow the best medical advice and take every conceivable precaution and still end up with negative effects or do everything “wrong” and have none. Some non-smokers get lung cancer. Some smokers don’t.

Regardless of what any doctor says or a person does, the outcome is always the same, death.

A doctor may see you a few times a year while you experience your life every second of it. It’s easy for a doctor to dismiss difficulties of managing a chronic condition that he doesn’t experience,to belittle side effects that have a significant effect on your quality of life. He might assure you that if you do things that he prescribes that you will have the best probability of a good outcome but probability doesn’t apply to an individual.

A truly honest doctor would admit that medical knowledge is far from being complete or accurate, and that his understanding of that knowledge is imperfect, that he follows guidelines often without understanding the basis. He hopes and he trusts that the people who put together those guidelines know more than he does.

I used to trust doctors far more than I do today but I realize that while they do the best job that they’re capable of doing, they are human just like us. They make mistakes,they overlook things they don’t think about all the consequences of their decisions and advice just like the rest of us.

When I meet with a specialist my expectations is that he will know more than a PCP about that specialty and less about another.

I’m not surprised when an endocrinologist never asks me about constipation, that a gastroenterologist doesn’t ask me about my BG variability, that my orthopedic surgeon is only interested in my BG during surgery, that my urologist doesn’t ask me about my gastroparesis, that my PCP doesn’t ask me about any of that, briefly checks my last A1C and only asks for my complaints during the 12 minutes that he’s budgeted for a routine examination.

I have very low expectations of my doctors. I look at them as service providers with no skin in the game. They get compensated regardless of the outcome of their work. When I meet with any doctor I have specific questions that I need answered concerns that I need addressed. I’m willing to accept “I don’t know” as an answer but if that doctor says that it’s not important or not relevant I start looking for another doctor. A doctor is not the arbitor of how important something is or how relevant something is to ME

I’ve come to realize that if I’m interested in my own quality of life I have to know as much as I possibly can about every aspect of my own health starting with my negative health conditions. I have to be the one to decide whether I’m getting good advice based upon the effects that I see. I have to look for outcomes of clinical trials, the side effects of medications, the new technology that’s available, and the statistical evidence to decide whether the evidence is strong enough for me to consider adapting it for.my own use.

I have to INTENTIONALLY decide whether to go with the flow and trust insulin dosages, timings,diet and exercise plans that are given to me by somebody else or or decide on my own what to do.

No matter which way I choose, I can’t blame anyone but myself, and even that is pointless. I didn’t choose to have the medical issues that I have. I just have to cope with them the best way possible - for me.

[pstud123]

That’s a generalization based upon some observations:

• more than half of all PWD have been ineffectively self managing their condition and have high average BG levels. That can lead to experiencing what feels like hypoglycemia and a higher glucose level or conversely decrease awareness at lower levels.

• the more common long-term complications of diabetes include progressive peripheral and autonomic neuropathy. These tend to mask early warning symptoms of hypoglycemia.

• the older you get the more probable it is that you have multiple health conditions and are taking multiple medications. Many medications have side effects whose conditioned acceptance can decrease hypoglycemic awareness

I tend to ignore generalizations about diabetes and instead think about what those generalizations are based on.