Talking with medical professionals


#22

First off, Thanks! I knew I could count on all of you to help prompt some of those memories of my last 48 years.
A little more on this discussion I will be part of. It’s a smaller group of med students learning about technology and diabetes. I don’t know where they are in their endo knowledge but the doctor who asked me said in the past they had a newer diagnosed person and he thought they would get more out of someone who has been through it all.
He wanted me to think about how it was all the way back to how I was diagnosed to where I am now and how each change I did or didn’t do and how it changed my diabetes and my life. He also wanted the mental side to each change.
And I must say where I started to where I am now, it has been a lot. There have been so many changes and yes most of the “tech” stuff has been recent but there was still little things over the years.
So give me a little more time and reading more posts & I will let you know what I think I will want to talk about. And as much as many of you want me to talk about all the issues we have with medical professionals, the point of this is technology and diabetes, where we were and where we are and how it has helped or hurt us.
Again thanks for all the help, keep it coming I have all weekend to put it together. Thankfully there will be the doctor there to help coach me if I get off track and he can ask me questions to keep me on track.


#23

Diagnosis! I wasn’t diagnosed properly for 8 years. I believe because I was overweight in my 50’s, even the endo diagnosed me originally as type2. And I even asked if I could be type 1 because my uncle had died from type 1. The pcp at the time said medications wouldn’t work at all if I was type 1. She obviously didn’t have a clue about LADA.

Quite a few doctors don’t still understand LADA and what it is and how long it takes for the process to happen. Before the second endo I had switched to an internist, who was great and went ahead and put me on fast acting insulin. Which i did well on. But she hadn’t thought about testing me either. I’ve run across a couple of doctors that will ask but you didn’t get it as a kid. That means they don’t get it either.

And there are still the kids that end up in the hospital before they are accurately diagnosed.

And you should see all doctors and nurses that get excited when I show them my sensor. From what I read somewhere most pcps I guess will only deal with a new type 1 diabetic once or twice in their practice. So they just don’t know about the technology out there.
CGM’s are the best way for type 1 or type 2’s to control their blood sugars better.


#24

Just went through the timeline you posted. It was very informative. And it sparked a memory of my U40 days. Completely forgot about that one! How far we’ve come! Thanks for sharing.


#25

The single most important thing to get through to them is that blood sugar varies spontaneously, without reference to any variables the patient can control or calculate, and this explains the frequent episodes of hypo- or hyperglycemia. This is something that medical education does not want its students to understand and the medical profession does not want to understand, since blaming the patient for blood glucose irregularities is so much more satisfying.


#26

Yes, I recall a lot of attention on making sure we used the right syringes to match the Uxxx, or would get incorrect dosage, when switching. Now I think there is U200 and U500.


#27

Ah, that sharpens it up a bit. Within that tighter focus, the single most dramatic change for me was the day I was finally able to switch to basal-bolus MDI, using Lantus & Novolog, after 20 years on the older R/N regimen. It was like being let out of prison. I literally cried–had to close the door to my office–the day I first experienced being able to Not Eat Lunch Right Exactly On Time and being… Okay! Mentally, that was the moment when I went from living my life to fit my medication, and being able to adjust my medication to fit my life. These days most people start out on basal-bolus and experience going on a pump as the great transition in their lives, but if you didn’t experience the R/N regimen to begin with, you can’t know how revolutionary the change to Lantus/Novolog was. For me, the transition to a pump was an incremental improvement, but it was Lantus/Novolog that was literally life changing.

ETA: I’m assuming “technology” includes new insulin formulations.


#28

I gained a few insights talking to my sister-in-law, who is a doctor in Egypt. She had never seen an insulin pump before because the technology isn’t available in Egypt, but she was still surprised by the limitations of the technology. I guess from reading medical journals she thought that the closed loop systems were much more efficient than they actually are. She was surprised that my Medtronic cgm was so ineffective (I switched to dexcom 2 months after that, which is much more efficient). She was also surprised when I told her that even if I had a closed loop system, I would still have to adjust things manually because of pre-bolusing, stress, and numerous other factors. I think she may be an eternal optimist because she was also shocked at my description of the American healthcare system, but it’s still worth noting that some of the students might think that the technology takes most or all of the guesswork out of the equation, when we know from experience that theres still plenty of guessing involved.


#29

Thanks for your insight and yes insulin is in the discussion. Mine was Lente and Regular. Very similar. So longer acting insulins, DNA insulins, “fast-acting” insulins, long acting including all the news ones out now and for me Symlin. Not sure if I will touch on some of the newer insulins because I went from Lente to Ultralente to insulin pump with Humalog or Novolog. Not sure if others will be talked about. But thanks for helping us realize how much insulin is in that tech file.


#30

It is sad to think how miss informed we all can be. Even people with diabetes think an insulin pump does everything. And as much advancement as we have made, it really is those who are looping that get the closest to a true pancreas closed loop pump. Even Tandem’s future pump next year is still called a hybrid closed loop. But we are getting closer! Thanks for asking for some more input to this discussion. Hopefully I can do us proud!


#31

Good luck. Maybe emphasise that until relatively recently, technology created more work and focus on D, not less.
For instance, home BGL testing. Initially, things were so cumbersome that I never tested more than once a day. Then the expectation was for frequent testing. Ugh.
Then the first CGMs came out, and needed calibrating what seemed like every 5 minutes. Ugh. More fingersticking.
Early pumps were clunky and required lots of fiddling about with basals and bolus rates. Lots of maths. Yes, definitely some benefit, but also loads of work.
Integrated CGM and pump. Awesome, but still not quite doing the whole closed loop thing just yet. And the only official “closed loop” uses dodgy CGM and kicks people out of auto mode lots🙄.
I’m using AAPS hybrid closed loop, and for the first time in 40 years, life is easier, not more complex. Of course there is a learning curve, and I’m at the hypo end of it right now🙄.
I had a dodgy cannula overnight, and am still kind of backfilling my basals. Badly, it would seem.
So it is definitely not perfect, but so so much better than anything else I’ve encountered on my D journey.


#32

This is so true! The technology impacts quality of life. I was diagnosed in 1986, was told that I was “insulin dependent,” and was put on Humulin N/R. At the time, this was the best technology available to a pretty average patient. BG testing involved test strips, but not meters yet. Remember holding the strip up and comparing the color change? But I didn’t have a significant change in my treatment until well after I started making a pest of myself (asked for CGM in February 2016), and you guys have really helped with that! Kaiser didn’t feel that my BG control, and general health were bad enough to cover a CGM until January 2017 (policy change). But no one from my doctor’s office mentioned this change until after a very embarrassing hypo event at work (yes, an ambulance!) In April 2017.

As people talk about closed loop and CGM, I remember giving up on 670 g Auto mode after a month (November of 2017), because it couldn’t keep up with my hormone fluctuations (hense my quoting Seydlitz).

Both the system and the technology has limits. Auto mode calculates based on the previous 7 days of data. Any T1 dealing with perimenopausal hormones (a trip of years, not months) can tell you how they mess with your BGs, and how unpredictable it can be. I didn’t have a “normal” for Auto mode to base it’s calculations on. It just wouldn’t work.

Before that (April thru September, 2017), CGM was a major thing for me because it showed me just how bad my BG control really was. For me CGM was going from still photos to a glorious color movie (but scary - spikes of 300s during the night on a regular basis - Who knew?!?!?). That was a huge thing for me. That led me to an insulin pump, but the “diabetes clinic” that my doctor sent me to had me jumping through hoops for 4 months before I got one. My doctor was aware that I was on a hormone rollercoaster, and still using Humulin N/R, but the rules said that I had to have training which was only available once every month or two. I spent +4 months wondering when my next hypoglycemic episode would be. That was nerve-wracking, to say the least.

Thank goodness for insulin pumps!!! The technology, even with irritations and limitations, is a major factor in my quality of life. But those students need to understand that quality of life involves much, much more than good A1c results. I just changed from the MM Guardian sensors back to a Dexcom (what I originally started with) because, for me, the MM Guardian sensors just didn’t work, and was fed up with “it’s pretty accurate for 3 out of 7 (or 6, or 5, or 4) days,” depending on how long my sensor lasted …

Wonderful tech that won’t work with your particular problems, or that you don’t have access to (maybe because you can’t afford it), just isn’t that wonderful.

Sorry to ramble. I probably sound like I’m on more that one side of these issues. It’s hard to logically express how much my life has changed in the last 1 1/2 years, but also how I feel about how hard it was sometimes to get here.


#33

P.S. - Just re-read my entry, and I forgot to say that I was diagnosed at at the age of 21, and they mentioned that I had “what they used to call Juvenile Diabetes.” My doctor in the hospital, not my GP (who totally messed up on diagnosing me), made it clear that he thought that Juvenile Diabetes was an old fashioned term in 1986 … interesting from a changing-semantics point of view.


#34

Oh, I’ve got lots to say here. I’m going to start with some of the softer issues that I think we learn from experience but are not taught to medical students, then I’ll go on to some comments on technology.

The first point I’d make is that a large part of treating diabetes is not technical. Even when the person with diabetes is sensible and fully compliant with the endo’s advice, the BG routinely goes out of range several times every day, sometimes dangerously so. The need to monitor and correct is a continuous burden that never lets up, and even when we do the right thing it all goes wrong anyway, so we have to learn to bear that and keep going. This is a mental and emotional challenge (“diabetes burnout”) that is vital to getting a good result.

A second point is the danger and fear. Not all who have diabetes experience it, but there are a significant number who have a background level of fear that rises to terror whenever things are getting out of hand. This can be especially difficult for parents of type 1 children, who worry when the child is in school or otherwise out in the world, and who have to wonder every night whether their child will wake up in the morning (“dead in bed”). A pumper who is arrested will have the pump taken away, and then they’re only hours away from DKA. Remind the physicians that in a hospital setting, when administered by medical professionals, insulin is handled as absolutely one of the most dangerous drugs, usually with special controls on all dosing and administration decisions. The potential for serious and fatal adverse incidents is relatively high. Now consider that the patients who have diabetes are making dosing decisions many times per day, and we’re adjusting for all kinds of factors — exercise, glycemic characteristics of what we eat (including the glucose that is produced by digestion of protein and fat, not just carbs), hormonal fluctuations in teens and in women that can require us to abruptly and without warning adjust our basal dosages by 30%, illness or medications that can double our insulin requirements. Adam Brown lists 42 factors that affect blood glucose at https://diatribe.org/42factors

Language. They use words like “compliant” and “I want you to” and “if you don’t X then you’ll get Y” as if they can scare, browbeat, or shame the patient into getting a good outcome. Real life doesn’t work that way. The medical professionals think that they are treating diabetes, but the person with diabetes is the one who is making the treatment decisions many times per day; the physician can only support (or hinder) that decision-making process.

Now to technology. I don’t have the long history of many of our members, I’ve only been dealing with type 1 for 15 years. But for me the major breakthrough has been CGM. Before CGM, we had a few rules to try to stay out of trouble, like measure before a meal to set a dose and 2 hours after for a correction, measure before driving and before going to bed, and don’t stack insulin. But now that we have CGM, we have a device watching over us all the time, to try to keep us safe even if our attention wanders or we are asleep. CGM usually works well enough, but sometimes the number it reports is just wrong. Most important: CGM enables us to learn cause and effect. And we can see it unfold in real time: we can make many small adjustments as the path of our BG is revealed, whether the cause of the BG excursion is understood or not (“sugar surfing” as per Dr. Stephen Ponder’s book.)

The pump is kind of like a continuously-available syringe, with the added benefit of adjustable basal. But the syringe is easy: draw a dose, put it in. With the pump, if I want 2 units of insulin it can take 15 keystrokes to get through all the confirmation screens the manufacturer and FDA put there “for safety.” Can you imagine if you got into a car to drive somewhere, and you turned the key, and it first presented you with a 10-question quiz to assess your fitness to drive before it would start the engine? It feels kind of like that.

The hybrid closed-loop solutions hold great promise. The current Medtronic 670G is good enough to help some patients; others find its limitations and behavior enraging and completely intolerable. Folks using the do-it-yourself solutions (LOOP, openAPS, androidAPS) are generally very happy because the algorithms are pretty good, and the user interface was designed by people who have to use it every day. Remember the 15 keystrokes to get a 2u insulin dose on the pump? Well with LOOP it is 3 keystrokes on my phone. And now I get to sleep through the night without BG excursions because the algorithm pretty much nips them all before they get out of range.

Oh, I have to chime in with Yve65. CGM and pumps are unaffordable for a huge fraction of the people living with type 1. “Wonderful but out of reach” is a huge problem for surprisingly many of us. How many people are trying to survive on R and N insulin? That’s a hard life. Some who are in better financial shape can get a decent life on Tresiba and Afrezza, possibly with the help of a Libre.


#35

Try to have some high value medical content not just opinion and “my experience as one.” I would throw in some USMLE step 3 type questions on DM or glucose where you can segue to some aspect of insulin pumping and control of bG, or the lack of it. For instance, I
give you two with answers:

  1. ED POC labs in 50 yo male with unspecified DM with these chemistries: Na 140, glucose 360, BUN 28, and osmolality 360. Pulse and BP normal. (a)Calc the osmolal gap and calculated osmolality. (b)How much is glucose contributing to increase of gap and why? © What substances can cause that increase? (d) Would an insulin pump have helped prevent this?

Answer:
(a) gap is 50 (normal is maybe <10) whereas calculated is 310 using the formula.
(b) Glucose is not contributing to osmolal gap since it’s adding 20 to both the lab and the calculated values subtracted from each other so falls away. 20 came from 360 divided by 18.
© manitol, ethanol, isopropanol, methanol, ethylene glycol, and sorbitol.
(d) no or probably not.

  1. DIabetic man 50 y/o appears alcoholic in ED. No pulmonary or peripheral edema noted. Glucose = 1300. Na 150. BP 60/40. pulse 120. What do you treat first and why and how? Would an insulin pump have made any difference here to prevent this and why?

Answer: You treat the hemodynamic compromise first over the lower priority hypertonicity because hemodynamic comp (tachy and low BP) can be fatal faster, despite the high glucose. The protocol is not to start with insulin although some might risk it unless Pt is insulin naive. If so keep bolus small. So you start with 0.9 saline for the first liter or two and then go to 0.45% saline after hemodynamic stability is accomplished. The wrong but tempting answer is to just give half saline from the start. Ringer’s Lactate for first IV is Ok choice but has lower osm and lower NA and lower CL so isn’t as gentle as 0.9% saline. --noting either can cause excess increase in ECFV so watch. The second Iv delivers water to correct the glucose by dilution. Prefer a KVO for meds over hep lock. Do not use D5W. It’s dangerous to give alcoholics dextrose. Prob add a rally pack to first IV. An insulin pump might have prevented this scenario by identifying the glucose elevation if it preceded the hemodynamic compromise which is unknown without further W/u.

You can make these scenarios up all day and put a couple on a slide. Give them something to do right away. People like to think and be tested without penalty for wrong answer. One can learn a lot that way. But don’t embarrass anybody who is not there yet. Help them get there. And then I would talk about insulin pumps after you’ve grabbed them with something technical that they need to follow.

Oh, serve food. People love food. It improves everything.


#36

It is interesting, I agree. I had a similar exchange with my GP when I was dx’d at age 28 in 1983, explaining that they were trying to change terminology but as it was, I was stuck with “juvenile diabetes.” Still says “diabetes mellitus (juvenile-type)” in my medical record. I had to send a letter to my dissertation adviser at the time, a Brit, to explain why I wasn’t going to get my seminar paper in on time. “It must be even more annoying to have the ‘juvenile’ kind,” he wrote back. Funny guy.


#37

Ok thanks for the help but this is a quick overview of technology and diabetes over the years from someone who has lived it. I am not teaching these students. I am not training these students. This is just a course they can take that gives them technology in different specialties. And the thought this time was someone has been through many of those changes. Your discussion, while great, is way over my head and sure not something this course is dealing with. I have a pretty good idea what I will touch on and it won’t be everything, not enough time. But the doctor is leading the talk, I’m sure will keep all of us on track. Wish me luck! I’m heading in a little bit. Going to get a bit of coaching from the endo running this session. Hopefully I can do us all proud talking technology and the mental burden it has helped clear and add to our daily lives!


#38

Break a leg, and let us know how it all went when you get a chance!


#39

good luck. I hate speaking to groups so I make it something for them to do rather than for me to do. Then the presentation is easy. I thought somebody said you were a nurse educator. What I wrote is all routine like DM in an emerg dept stuff. I am sure you will do well since you’re a nice person and gr8 communicator here.


#40

Emergency DKA treatment is super important, many of us have been through it personally, but it is hardly the day-to-day life of a typical diabetic, or something you would ask the diabetic about. Those of us who were in ER for DKA were often barely conscious at best.

The last part of the answer to your second question is funny because you assume a pump means CGM?

My school of hard knocks experience, is that DKA is actually more common with pumps (bad site, etc.) than with other insulin administration methods. Is that insulin I smell?


#41

Tim 12, you brought up excellent points and interesting. I was perhaps sloppy in that I didn’t specify with or without CGM. I was kind-a assuming it in combo with a pump. or without. Anyway, even if without a CGM some basal insulin coverage by the pump would still have more or less made it more or less correct anyway, insofar as a pump would supply basal insulin that might have been useful. On second thought I could delete the whole thing. I thought it was a good example. Anyhow, I am trying to offer something to the discussion. I don’t work and can’t recall what day of the week it is on a good day. And I am embarrassed to admit I am probably a bad diabetic.

I am an old fuddy-dud and never had a CGM. I just never got around to it. I might try a G6 and get a new tandem pump in 2019. My last tandem pump is now 8 yrs old. Often I don’t even use it. I am sick of alarms, beeping, carrying it, infusion site issues, itching, little site infections, and so on. I have never figured out a good way to sleep with it. So one more gadget, yeah, beautiful.

Moving on from that. . .

I have no idea if pumpers are more prone to DKA than non-pumpers. It could be in the literature somewhere. Even if it is it could be wrong. – many variables to control. I don’t know.

I’ve had DKA and know the drill for eval and Tx of both HHS in T2 and DKA in T1’s. Amazingly more deaths come from HHS somehow. Anyhow, medical staff everywhere know all about it and tend to do a good job with these entities. Some difference exist like some say keep nil orally but this is actually unnecessary.

I suppose you understand blood gases in DKA. They show base excess that is severely negative, common with Kussmaul breathing, that will show a low partial pressure of CO2 in conjunction with low bicarbonate because of forced increased respiration (blowing off the carbon dioxide) . That’s how it’s technically correctly stated, somewhat seemingly backwards. Anyway, usually in DKA one feels an urge to breathe deeply (air hunger) and it appears almost involuntary. But the Kussmaul may be absent so you cannot r/o DKA if absent Kussmaul. To my mind, and I sure think this is correct, osmotic diuresis resulting in hypovolemia and subsequent underperfusion of the tissues is always present in DKA or it is not DKA.

Usually treated by: (1) fluid replacement (lactated Ringers or 0.9% saline then later changed to 0.45% saline to match losses due to osmotic diuresis); and then (2) insulin (fast acting AFTER initial volume resuscitation is complete, never first, and probably not as a bolus, but give all or mostly all by adding to the IV for slower administration. Potassium goes up in DKA and dehydration increases but then reverses upon fluids so you gotta watch K and Na and maybe even Mg, Ca, phos, and anion gap too (get it down).

Did DKA leave you exhausted and excess fatigue? It did to me but I don’t know how common that it.

SOMETHING MAYBE DANGEROUS THAT SOME PEOPLE DON’T KNOW IS NOT TO RELY ON PEE TEST STRIPS AT HOME FOR KEYTONES BECAUSE THEY CAN FAIL TO CATCH THE ONES DURING DKA THAT ARE MEASURED IN A URINE LAB AT A HOSPITAL. Also home meters can be off over 600 mg/dL so talk to doc to determine when to go to hospital. I don’t think it conforms to the rules here for me to give an opinion on that to anybody so I will not say. But a good rule of thumb is: DON’T MESS AROUND WITH IT. I always mess around with it because i mistakenly presume my knowledge will save me. WRONG.

The most disturbing thing I heard all year was an ambulance driver say (about me) “his lips are blue.” I thought I was fine. I was incoherent but to me I made perfect sense. I almost didn’t call the ambulance. The kids on it were terrific.