Bg was 35

Type 1 and LADA
24

My criticism, if you read it carefully, is of the poor training given to PWD.
That we must learn from personal error to deal with problems that are 100% predictable and inevitable I find totally reprehensible.

The paternalistic pratice where CUSTOMERS are treated as children incapable of rational thought, compehension or learning, who must “go to papa” with all problems instead of being taught how to solve them, imo is the largest problem with not just medicine men, but all service industries. It conditions people into a pay someone else mentality, and creates victims. .

25

I might require a little elaboration in order to understand your perspective. Let me ask a question to help steer my thinking. Are you most irritated by the medical system or with people who use it?

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I have a hard time figuring out what people want from posts. I get really upset when I read of near-death experiences of PWD because most are avoidable. I try to cover all the bases, and motivate people to take responsibilty for what they can control, but I inevitably ■■■■ someone off.

I’m most upset by the system, some, but less by the people who allow themselves to be treated like cattle, because they’re being trained like cattle. I’m upset by people who won’t, not can’t learn.

I get upset when well-meaning people who rarely see me and know I have DIE-a-betes treat me like I’m going to die if I eat something with carbohydrates. (This coming from people who are obese, whith heart condition who drink and drive. ) That’s been my experience of so many previous holidays that I avoid them as much as possible. Bah-humbug.

The weather outside is cold but otherwise fine.

My diabetes control is better than most. It has improved from 95% to 99% TIR with 14% SD the past month, and I’ve lost 15 lbs in 6 months since since I gave up on my endo knowing WTF they are doing. I have health problem that are the result of having lived this long despite doctors. If I’d believed my doctor at diagnosis and just followed their directives explicitly, I would have died before 2000.

My frustration about education and training comes from seeing how poorly the onboard CGM and pump" education" is at my supposedly A-class medical center. The total “trouble shooting” was “when in doubt change it out”.

Telling people what the buttons do isn’t education; it’s not even basic training. It’s like a car salesman telling a novice driver in Des Moines, “Here’s where you put in the gas., how to start the car. If you don’t think the car is running right, replace the engine. Now you can drive to Chicago. Call me if you have any questions.”

That assumes that the novice driver survives to ask.

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Yeah, that is really annoying. I wish I had better strategies for dealing with this…especially around Christmas. My only strategy has been to explain the details of how this all works, every time someone makes that comment. That’s annoying to have to do, but I try to think of it as doing the small service of benefitting THEM about how the illness works. I have the secret, ridiculous hope that one of two things might happen: 1.) They get sick of me explaining the details and so stop making remarks like that; or, 2.) I eventually explain it to everyone on earth and people stop making those comments.

I agree, its incredibly annoying.

I think this is true sometimes and sometimes it’s not. For instance, when I read that the OP is off their pump and replacing with manual injections, there is something more complicated going on that they may or may not be in control of. Probably the medical system has failed in some way…because that usually where the failure lies. For example. I’ve been trying to get pumps for 2 months. A computer system failure on the insurers side broke both the distributors and the device manufacturers systems. They have to fix it before they can mail more pumps and bill successfully. That’s a common type of problem that puts a large burden of risk on my because they medical system can’t perform essential functions that they are paid to conduct. The system is frustrating and broken and its no surprise that problems develop as a result.

That’s awesome. Things are a mess across large swaths of the country.

That’s horrible, but all too common.

I agree. I’m glad that I have had access to this community over many years because this forum has done a lot to educate individuals, but also has done a lot to reshape the entire perspective of diabetes within medicine. This forum is full of highly competent and well educated patients who have re-shaped the way that diabetes is understood and treated over time. It’s really important that you are here to help with that.

Problems are really hard to solve. I guess if everybody just picks one problem that really troubles them and helps fix it, somehow, over time, things get better. Things are MUCH better for me now that they were 30 years ago. Progress is slow, but you can’t stop it. Hang in there, pstud123. Your doing great.

I’m listening to this before Christmas starts to see if they have any ideas that are useful to our situation: The Fee-for-Service Monster | Hidden Brain Media Its about 1 aspect of how healthcare is structured. Not sure if its valuable yet. Haven’t listened to the whole thing yet, but it might have some applicability to the problems you mention here.

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I agree completely. My first pump was a MiniMed 508, with no intelligence whatsoever. There wasn’t even a bolus calculator. You calculated everything yourself. I like the newer features, but I did learn how insulin therapy with a pump worked. Maybe someone can make a “dumb pump” video game with prizes and flashing lights, etc., where you have to calculate all the numbers yourself. Maybe post high scores. Would anyone use it?

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29

The FDA would never approve the game aspect.

I was a late adopter of the newer tech, a CGM and pump this year after 45 years of MDI. I got into it reluctantly only because I could tell that I was going to need it as my awareness and abilities diminished. I know how the tech is developing and can see that within the next decade I wil need one iof the closed loop pumps with non-invasive CGMs that will be available for purchase, even if FDA is influenced by the vested interests to not approve them. If I must, I’ll import it from the EU or east so my future caregiver has the easiest to use tech available to keep me going

I intentionally started with a T:slim and Basal-IQ si I could get the numbers right. Good thing I did, the numbers the endo calculated had me hyper within 2 days. I switched to Control IQ and with some lifestyle changes was getting nearly as good control as I’d gotten manually, but it took more work than before. This did NOT match with what I’d been told.

Unfortunately, my endo and the “diabetes educators” know less about using the current tech than I do. I report anomolies I find to Tandem and the response I get tells me that they are working from scripts, don’t actually understand the tech, even if they are using it.

If I were poorly controlling my BG and not keeping very careful notes, I might have never found that the way CIQ works is NOT the simple minded way its described in the manual. It didn’t do automatic bolus corrections under several conditions that aren’t as described, and sometimes not at all until the most recent update.

That they can “get away with that” is because the hybrid closed loop model is designed to assist, not control. 75% of the people using these pumps have A1Cs, that are lower but still over 7 because they donot know how to use the information from their CGMs to make rational changes to their lifestyles. That’s the result of poor diabetes education and a pateralistic medical system.

Self-training material is disorganized and incomplete. I’ve read everything I could afford to buy or borrow over 40 years related to diabetes self-management. The two best books for a CGM pump user, Think like a Pancreas and Pumping Insulin don’t cover nutrition and exercize, but only mention it for carb calculations. The general books do a poor job of presenting anything except nutrition counts. Exercize books don’t cover monitoring. There are a few clinics like one from a Dr Bernstein (so?) that try to integrate the material.

This doesn’t match the need of the projected 25% of Americans and wester Europeans who will have diabetes within a decade, two at most. I almost glad that I won’t be here to see the disaster, but dread the effects ober the next 10 years on the customers of a medical system that is already unable to cope and is unwilling to change.

30

The FDA wouldn’t be involved if it was just a game. It wouldn’t have any controls over a pump system. Just enter the data (BG, basal rates, bolus food and correction ratios, carbs, etc. We had to calculate IOB manually, too.) Nothing would communicate with or control the pump. You could also get immediate validation after you have your pump do it’s thing. Flashing lights, points, fame and fortune.

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It couldn’t be a part of a pump at all or the FDA WOULD be involved. They had to approve the bolus calculator software and the t:simulator app.

This looks like something that a game developer with T1D might be interested in creating. But the basic calculations for insulin correction are too simple. bell and lights aren’t enough reward. To be successful it would need to have a strong game aspect so that the calculations would be a small amount of work relative to the entertainment.

imo It would be more productive to have a real world boot camp, where activity and BG were monitored, food + insulin were “rewards” for correct calculations of many balanced meals , and you couldn’t leave/graduate without passing grades. CGMs and pumps could be automatically monitered near-real time (instead of the 5 minute scans done by endos a few time a year) to see how each trainee was doing.

32

Yup, they always do this. I think its partially a liability thing. But you might think of it as ‘course tuning’ of the system. The patient does the fine tuning.

No one of this forum would advise you to allow the endo to dictate your dosages. They are not good at it.

Absolutely true. I wish they were more honest about this. This is marketing and them trying to sell more devices. “Informed consent,” is a fundamental rule in medicine that is not followed as you move up the chain into the Doctor and device realm. Patients are supposed to be informed prior to making medical decisions. An EMT would be required, by law, to inform a patient about risks, contraindications, procedures, and complications associated with any treatment before a patient can legally provide ‘consent’ to treatment. Doc’s fall short here. That’s bad ethical conduct.

The tighter your control, the less likely a closed loop system is probably going to be a good fit. I think this is somewhat well established and accepted (although not totally because we don’t have a ton of users of closed loop systems). One reason for this is that people with tight control tend to use aggressive algorithms and run a little lower. That’s risky for the device manufactures to implement because its associated with some level of patient risk.

Fact: Doctors don’t DO tech. Diabetics DO tech.

33

Its worth noting that a closed loop system implements an algorithm. That algorithm might work for some segment of the population, but inevitably will not work for others. That’s the nature of human physiology. There’s a lot of variability.

I’ve never used a bolus calculator in my life. I don’t find it to be helpful.

Exercise is a tough one. If you are a professional bicycle racer AND a diabetic, life is gonna be more difficult. Your system behavior will have more variability and ‘chaos.’ Your system will be less ‘controllable,’ and take more work to manage. You will have a much higher likelihood of adverse events like low BG. There’s a reason diabetics aren’t in the army.

That doesn’t mean you shouldn’t be a professional athlete. It just means that you are playing a different game with different risks. Over time, that experience will help us all understand exercise better and develop better algorithms. Risk is OK in some cases. Low BG isn’t necessarily a failure. It can be a natural part of an effort to grow and develop as a diabetic. It might be an effort to explore what is possible.

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My criticism and observations aren’t from my being endangered by this endo’s onboarding practice, but as a warning to others. I’m concerned by what could easily happen to someone who doesn’t have enough knowledge and experience to self manage, to detect and quickly respond to a physicians’ dosing error.

If I had been using analog insulins for MDI I would have had a basis for disagreeing with the endo. Because I had started with a CGM a month earlier, and insisted that I start with Basal IQ , I was able to see and understand what was happening. I did the calculation and made the changes myself. Since then I’ve been reviewing my AGP every 4 weeks and tweaking my profile with great success- despite my endos being very upset that I don’t consult with them before making changes.

From the comments of the Tandem pump trainer and the diabetes educators, I know that I’m an outlier in my ability to control my BG with diet and insulin, and COVID kicked that up a notch. If my current PCP didn’t insist that an endocrinologist be involved, I wouldn’t continue to use one now. The excessive delays from needing a new Rx twice a year, a doctor who works a short week, and the pharmacy needing to resubmit unfamiliar “paperwork” to Medicare has been really frustrating.

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35

To me that’s almost a firing offense. In my case, I foist the 90-day AGP report on them first. Am I competent at managing my BG or not? The answer is clear, and that seems to prevent them from raising objections.

36

I no longer expect doctors to have the time or interest to practice medicine with competence. I’ve heard the same story from four different specialists, each complaining about how they are making less money each year.

All of them now make much more than I did at the end of my career of working +60 hour salaried work weeks and spending 20 to 30 hours per week learning new skills to stay current and advance in engineering.

I prepped for my last endi visit by printing out 90 days of AGPs because the practice doesn’t have a color printer, doesn’t/can’t connect to the Tandem website (that they had me give them.my password to connect to), and required at the last visit that I physically disconnect my pump and give it to take somewhere to manually download.

The endo barely glanced at the summary page and put the whole thing aside before telling me to change my basal profile a change that the.pump cancelled out but is wrong when I need to assume manual control when my CGM or pump fails. ( That profile was the work of months of tests, changes, and analyzing the data. I know WTF I’m doing)

I know what it’s reasonable for an endo to know about treating patients with type 1 and type 2 diabetes. I know what my endo doesn’t practice- learning and thinking.

From their reactions and their anecdotes about relatives and foreign countries who died of hypoglycemia I know what they believe and know. I that their training is at least 10 years out of date and out of sync with the current AACE and ADA guidelines which are update every few years because I’ve read them very carefully.

The new version isn’t novel, don’t contain new information that wasn’t in clinical trial reports and articles published in the professions journals. I found those from summaries in the Endocrinology advisor daily newsletter. It takes 5 minutes per day to scan its headlines for articles that might apply to a practice, and five more to read a summary in it.

I took a 1 hour online continuing education course that’s available free to any physician who’s interested specifically on how to interpret the AGP and apply it in practice. That course specifically emphasized how using the AGP and the attached curves can reduce the amount of time and expense per patient with better outcomes. Tats one of 8 free courses I took over 4 months on bringing physicians up to speed on diabetes management.

The same kind of thing is true of my neurologist, cardiologist and gastroenterologist. I’m spending a few minutes a day to learn things that they should be aware of but aren’t, because they “don’t have the time” to keep learning their craft.

It seems absurd to me that they can’t, but an engineer can see the fallacy of not investing time to reduce inefficiency in their practice of medicine when the number of patients they are increasing, their health deteriorating slower, but in aggregate are requiring more, and more expensive, medical care over their lifetimes.

If you are lucky enough to have a doctor who hasn’t burned out, hasn’t stopped aggressively learning and thinking, I suggest that you add them to your Christmas list and make a special effort to make them feel appreciated. With luck they won’t move to another practice and leave you stranded.

As for me, I’m going to try to persuade my PCP to stop handing off my “care” to specialists who know less than I do, and only use them for specific diagnosis or confirmation of hew problems that he doesn’t feel capable of doing alone.

I may not get better “treatment” but I’ll have fewer unproductive sources of stress.

37

@pstud123 All of our really good endos have left practice. There’s some left who are decent enough, but I’ve stopped trying to have a relationship with an endo because every time we get established, they leave and are off to some new clinic. I’ve given up.

Do you think we could somehow convince them to create ‘permanent prescriptions’ for permanent illnesses. I mean, since diabetes hasn’t been cured, I expect to need my insulin prescription for some time. I’m am also sick of the hassle of refilling it. Docs might be on board to a decrease in their administrative load, eh? You think this is possible?

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Long ago I had an insulin prescription that was as required with no limit as to fills. (I didn’t need an Rx to buy syringes,) I rarely saw a doctor except for injuries.

That suddeny stopped more than 20 years ago when I changed employers and insurance companies shortly after that was a crackdown on syringe sales. To getvwhat I needed to stay alive, I needed to visit a doctor at least once each year. since I was employed hourly with no time off for for vacation or sick time, these visits cost me income and they never resulted in a change in my diabetes management.

Personally I thought that the whole thing was ludicrous because I was telling my PCPs who were writing the prescriptions what and how much I needed. For more than 20 years I was buying insulin and all my diabetes supplies out of pocket and over the counter. Those supplies cost me less than the doctor’s visits.

Today, it isn’t the doctors who need to be convinced but the state legislatures and Medicare. Illinois puts a limit on the duration of a prescription of one year. Medicare requires that a Part B prescription have annual doctor’s authorization based on a documented visit , twice annual for pump supplies.

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I think pump supplies are every 3 months.

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So there IS state law responsible for this?!?! Someone told me that last week, but I was hesitant to believe them without asking you all. Especially because a bunch of people are buying CGMs without an RX now. I imagined devices were regulated like pills/meds. I mean, it’s classified as a class II device (medium risk), so I imagined an Rx was required. But, a bunch of non-diabetics are using them now. For what, I’m not quite sure, but people say there’s a trend that the fitness nuts like to use them.

Illinois is the worst state for laws regarding diabetes management (and other illnesses) being written into the books. I could never survive there. Someone asked me if the state law regarding drivers licensing could be pulled back in IL. I would sooner try to pull them back in ALL other states than IL. IL is a legislative snake pit.

Medicare implies Federal law. You all would stay this is rooted in State and Federal law? I think that could fixed. It’s easier to change State law than it is to deal with insurance procedures.

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Yes. But my Medicare Part B supplier, Solara bugs me every 5 months or so to get another reauthorization/proof of visit with my doctor so they can ship on time.

The thing is a mess, and probably designed by some well-intentioned but ignorant bean counter who wanted to assure that no one charged Medicare for life-maintaining supplies for a Medicare beneficiary who no longer needs them.

That could be accomplished with less effort and stress by having a system where the SSA was notified of all deaths by coroners, morticians, life insurance companies, and relayed the verified information to Medicare. But that notfication/information system doesn’t exist- yet.

My cynical side can imagine a conspiracy to reduce the Medicare cost by reducing the number of claimants, but a lack of competence is more than likely than maliciousness.

42

They say that the administrative costs of maintaining the medical system are eating up a substantial fraction of our GDP. I believe it because the cost and effort for me to maintain those Rx is significant. Something ought to be done. I tire of this. The pharmacy keeps accidently overwriting previous Rx with new, crappy ones from Docs I don’t even see. They keep trying to force me into an appointment, but that’s really disruptive to my work and I’m not taking days off work to fix their administrative errors. I’m not doing that anymore. There’s no end to their administrative errors. I’ll be unemployed.

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A CGM is a lower class medical device than an insulin pump. They are regulated for safety and like pulse oximeters, only some are some that are approved for diagnosis and treatment of medical condition. Like BGMs, CGMs can be bought OTC in some places, but to get the paid for by insurance, they need to be approved for medical use.

The only reason for a government to exist is to provide services for the public that either can’t be trusted to private enterprise or aren’t profitable. The reason that in the US states have as much authority as they do is a distrust of any single all-powerful national government. By the US Constitution, the states have local authority regulating everything except what the Constitution and the Federal goverment has explicitly and legislatively taken from them. For everything that can be bought, there’s local regulation as to who can sell, who can buy and how it can be used.

Every state regulates healthcare directly and indirectly, through licensing of providers and insurance companies. If you believe that its easy to change state law, you aren’t aware of the complexities and vested interests. They aren’t any better at state level and the adminstration of local law is worse. In both cases, what is protecting us from government overreach is the same thing that threatens us. The agencies and their employees create the procedures for executing the law, and they execute it.

I believe that the bulk of state regulations are intended to protect the least competent of us from ourselves and others and they are intended to work as a deterent, because enforcement is very difficult. I doubt that every affidavit from a doctor ir anyonbe else is verified for authenticity. I know that regulations like speed limts are widely ignored and weakly enforced unless their breach casues or becomes a problem too large to ignore. I’m more disturbed by ineffective or inefficient regulations than anything else.

imo You would survive living under Illinois’ regulations as well as thise of any other state in the US. What would change is how much you’d have to enjoy and what you’d have to complain about. “Give me liberty or give me death” sounds nice. “Give me license to do what I must to strive to thrive” is better.

My fathers nuclear family has spread across the US, from larhge cities to farms. Every one of them has some local benfits and nuisancesand they are all different. I like a large suburban environment, my daugther prefers small town rural - until she needs healthcare for her family.

For the mix of services I have here and need, I can tolerate Illinois metropolitan population density, healthcare regulations and drivers licensing regulations easier than I could tolerate California’s traffic congestion, environmental, product safety, and health regulations, or Tennessee’s and Kentucky’s lack of them.

As a life-long resident of Illinois I’m ambivalent about Illinois law regarding drivers, and more so since my +95 YO step-father had multiple accidents driving a pickup truck in Tennessee. The final time he blacked out whle driving and totaled his truck in a single vehocle collison with a tree… My 98 YO mother,who has a pacemaker, reluctantly gave up driving and is giving away her car only after being hospitalized, and told that she needs to move to assisted living after she gets out of skiled nursing.

No one in tne family felt safe being a passenger with either for a decade before they were forced to five uo driving. They didn’t need to drive. They had many transporatation options that cost less than maintaining personal vehicles. They equated driving and mobolity with independence, even though they were dependent on others for everything else.

In Illinois:
Drivers under age 21 — licenses expire three months after their 21st birthday*;
*Drivers age 21 through 80 — licenses are valid for four years and expire on a driver’s birthday;
*Drivers age 81 through 86 — licenses are valid for two years;
*Drivers age 87 and older must renew their licenses each year.
*All persons age 75 and older must take a driving exam.
*Everyone must take a written exam every eight years except those having no traffic convictions.
*If you have an accident recorded on your driving record, you may be required to take the written and/or road exams.
*If you have any medical or mental condition that may result in a loss of consciousness or any loss of ability to safely drive a vehicle, or you take any medications that may impair your ability to drive you must file a Medical Report Form completed by your physician.

While I haven’t ever blacked out and can see well, I don’t mind needing doctors to cerify that I’m still competent to drive. It gets harder for me to drive each year and I’m aware of it. I tire faster. My reflexes are slower. I find it harder to concentrate and sometimeds can’t remember what I’m doing, where I’m going or why. All of these things are driving risk factors, and I’m trying to decide now whether or not to renew my license. I donolt want to wait until I become dangerous.

imo You could survive living under Illinois’ regulations as well as those of any other state in the US. What would change is what you’d enjoy and what you wouldn’t.

My fathers nuclear family has spread across the US, from larhe cities to farms. I have a brother who is a farmer, another live in a tevch center city. Every one of us has dichronic health conditions, has some local communuty benefits and nuisances- and they are all different. I like a large suburban environment, my daugther prefers small town rural - until she needs healthcare for her family.

For the mix of services I have here and need, I can tolerate Illinois metropolitan population density, healthcare regulations and drivers licensing regulations easier than I could tolerate California’s services, traffic congestion, environmental, product safety, and health regulations, or Tennessee’s lack of them.

Your balance will be different from mine. But it’s no fundmentally no different from using a CGM instead of a BGM . Nothing works perfectly and the utility and protential benefits of one tech or community need to be weighed against the disadvantages and costs to you.