3 ms·

It is a horrible disease - my sister was born with Type 1, and was lucky enough to be offered a pancreas transplantation some 10 years ago. Unfortunately her bo

It is a horrible disease - my sister was born with Type 1, and was lucky enough to be offered a pancreas transplantation some 10 years ago. Unfortunately her body rejected it after a year or two, and she was on immune depressants ever since, while waiting for a new one. She works in fitness, and lives a very active and healthy lifestyle - but still the diabetes was progressing, slowly but surely. Those new automatic pumps turned out to be a lifesaver, and she opted to get off the immune depressants due to likelihood of other nasty stuff that those bring (cancers, infections, decreased fertility, etc.). Hopefully these pumps will work so precisely, that the damage from inconsistent insulin levels will be a thing of the past. But she obviously still needs insulin. Luckily we live in a country where that is more or less free, and always in stock. I honestly can't remember the last time she suffered from bouts of low blood sugar - which was unfortunately a very regular thing back when we were teens. Unfortunately that was not the case for my old HS gym teacher. He, too, led a very active and healthy lifestyle, but the disease progressed in a very insidious way for him. He developed a foot sore that wouldn't heal, and after some time they decided to amputate said foot from ankle. Then he had a heart-attack some months later, and was bound to the wheelchair. Which was followed by two more amputations, the other leg and one arm. He lived like that for some years before ending up blind, and doing longer stays at the hospital. Finally a massive stroke got him, and that was it. I think he spent some like 5 years from amputating the first leg, to passing away. And as you can guess, that included tons of hospital visits / stays, medication, physical therapy, becoming dependent on your friends and family, and what not. It is truly insidious, because it can completely wreck your body in so many ways, and pretty slowly too. I can't imagine having diabetes w/complications, and living underinsured (or without insurance) in a country without universal healthcare. It seems like to have a fighting chance, you need consistent insulin supply, and modern delivery systems. I shudder when I hear about poor people in the US rationing insulin, and still being dependent on those antiquated measurement/delivery devices. Seems like you're just entering a negative feedback loop, which will eventually catch up with you.

RHSeeger 4y ago
> and modern delivery systems. While I'd agree with most of what you say, I disagree with this. Using a syringe and manually taking insulin is perfectly workable. Personally, I have chosen to go with manual insulin injections over a pump. That being said, the invention of the CGM (continuous glucose monitor) is, in my opinion, the single best thing to happen for diabetics since the advent of synthetic insulin. Being able to know what your blood sugar is with no effort at all, and being alerted when it's high or low... is just life changing.
- davidthewatson 4y ago
  I can understand your perspective since I've lived with Type 1 diabetes for most of my life. However, CGM is a technology which may have serious, life-threatening side effects when its data is inaccurate and used in concert with a hybrid closed loop insulin pump. In patients like me, the frequency of bad data is daily. "Being able to know what your blood sugar is with no effort at all, and being alerted when it's high or low... is just life changing". That may be true as long as we include death and serious injury as the "life changing" events that they are. CGM is useful technology but "life changing" is assuming a level of execution that does not exist in the current generations of CGM technology that I've used, which include Dexcom G6 and Freestyle Libre 2. It is well understood in the research community of MD-PhD's that interstitial fluid in adipose tissue is a reasonable proxy for plasma blood glucose with the correct algorithmic approach, but it is not perfect. Particularly in patients who have low adipose tissue, the data emitted from these sensor devices is frequently wrong at fasting times such as exercise and sleep. I've worn an insulin pump for more than twenty years and used Medtronic, Dexcom, and Abbott for their CGM data in recent years. The sensors have been replaced under warranty dozens of times, due to inaccurate readings, the last of which I submitted today, when the pump alarmed at 1:30 AM last night reporting that my CGM BG was 50, when my plasma BG reading was 112, the former of which is hypoglycemic while the latter of which is slightly hyperglycemic. I've seen much larger variations than that. We'll leave the fact that my quality of sleep has been destroyed by these devices for another discussion. This is frequently nightly. The problem is this: at night or during exercise, when fasting states are both reasonable and customary since it's difficult to eat and sleep or eat and exercise concurrently, innacurate CGM data can induce the pump to either increase insulin delivery, decrease insulin delivery, or stop delivery entirely. In turn, those 3 conditions can result in hypoglycemia or hyperglycemia, either of which can result in injury or death. So while diabetes is a difficult disease, it must be noted that exogenous insulin is like any other prescription medication - there are side effects. Further, technological solutions such as hybrid closed loop insulin pump systems, when used in concert with CGM, may have deadly side effects that are not clearly communicated, nor are they pursued with vigor in the billion dollar companies who promote these products. Given what I've seen, I've merely warned my doctor and the FDA of the need for oversight and regulation in these markets. I'm hopeful that the products do eventually get fixed, but having worked in medical devices, I'm not optimistic given the history of the FDA's involvement in insulin pump security breaches in the last decade.

RHSeeger 4y ago

> and modern delivery systems. While I'd agree with most of what you say, I disagree with this. Using a syringe and manually taking insulin is perfectly workable. Personally, I have chosen to go with manual insulin injections over a pump. That being said, the invention of the CGM (continuous glucose monitor) is, in my opinion, the single best thing to happen for diabetics since the advent of synthetic insulin. Being able to know what your blood sugar is with no effort at all, and being alerted when it's high or low... is just life changing.

davidthewatson 4y ago
I can understand your perspective since I've lived with Type 1 diabetes for most of my life. However, CGM is a technology which may have serious, life-threatening side effects when its data is inaccurate and used in concert with a hybrid closed loop insulin pump. In patients like me, the frequency of bad data is daily. "Being able to know what your blood sugar is with no effort at all, and being alerted when it's high or low... is just life changing". That may be true as long as we include death and serious injury as the "life changing" events that they are. CGM is useful technology but "life changing" is assuming a level of execution that does not exist in the current generations of CGM technology that I've used, which include Dexcom G6 and Freestyle Libre 2. It is well understood in the research community of MD-PhD's that interstitial fluid in adipose tissue is a reasonable proxy for plasma blood glucose with the correct algorithmic approach, but it is not perfect. Particularly in patients who have low adipose tissue, the data emitted from these sensor devices is frequently wrong at fasting times such as exercise and sleep. I've worn an insulin pump for more than twenty years and used Medtronic, Dexcom, and Abbott for their CGM data in recent years. The sensors have been replaced under warranty dozens of times, due to inaccurate readings, the last of which I submitted today, when the pump alarmed at 1:30 AM last night reporting that my CGM BG was 50, when my plasma BG reading was 112, the former of which is hypoglycemic while the latter of which is slightly hyperglycemic. I've seen much larger variations than that. We'll leave the fact that my quality of sleep has been destroyed by these devices for another discussion. This is frequently nightly. The problem is this: at night or during exercise, when fasting states are both reasonable and customary since it's difficult to eat and sleep or eat and exercise concurrently, innacurate CGM data can induce the pump to either increase insulin delivery, decrease insulin delivery, or stop delivery entirely. In turn, those 3 conditions can result in hypoglycemia or hyperglycemia, either of which can result in injury or death. So while diabetes is a difficult disease, it must be noted that exogenous insulin is like any other prescription medication - there are side effects. Further, technological solutions such as hybrid closed loop insulin pump systems, when used in concert with CGM, may have deadly side effects that are not clearly communicated, nor are they pursued with vigor in the billion dollar companies who promote these products. Given what I've seen, I've merely warned my doctor and the FDA of the need for oversight and regulation in these markets. I'm hopeful that the products do eventually get fixed, but having worked in medical devices, I'm not optimistic given the history of the FDA's involvement in insulin pump security breaches in the last decade.