Four years ago my grandfather did the A1C test. His A1C came back at 5.6
His doctor prescribed him Januvia and said he was pre-diabetic. Think about that for a moment.
Four years ago my grandfather did the A1C test. His A1C came back at 5.6
As with all “institutions” many of our doctors were educated in the past and haven’t kept up; the medical community has compounded this by also being behind the times, including Medicare. A1c was great when that’s all there was, but CGM’s, TIR, and GMI need to be and should be the standard used to determine “control.” The medical community and Medicare need to catch up with the community and reality. As pointed out, A1c gives only an average that hides highs and lows, giving the impression of good control while hiding the fact there is little, if any, control with some people. If you don’t have a CGM, then form your own by tracking your BG data from sticks and creating your own average, or use the built in functions of most BG meters that give you an average. Yes, you can cheat using multiple meters and fool your doc/Medicare, but that’s only hurting yourself.
I am not sure what you are getting at. Many doctor’s offices use non certified bench A1C equipment to measure A1C and they can be off by as much as 1% so if that is the case, your grandfather may very well have been pre-diabetic with an actual A1C of 6.6. In diabetes, trends are far more important than an individual number and getting the blood work processed through the same lab each time, if possible, is critical as well.
I have to remind myself that medical doctors are just mechanics who spend years in school studying with other older mechanics, NONE of whom actually understand how the machines they service work. And they deal with a lot of “broken machines” that often run worse no matter what they do.
So I wouldn’t be surprised that a PCP wasn’t up to date in diabetes tech. It’s full time job keeping up with "ask your doctor about " Xpensivedrug.
I am disappointed when a specialist isn’t as up to date about a life-changing technology in their field, one that was approved by the FDA years ago, as a motivated patient who spends 1 hour with a web browser. Especially technology that isn’t actually new and can now benefit the largest and fastest category of their customers. In my field, when a new tech becomes available, we scramble to figure out how to apply it, how to deploy it as quickly as possible to those who can use it.
I saw a new endo for the first time in January. They are a good doc who cares about oatients. When I saw them then my A1C was 6.7. In March, at my request, they prescribed a Tandem pump and G6 sensor for me.
I used the G6 sensor to modify my diet for one month and my blood glucose stabilized while I was still using human synthetic insuln and MDI. In late April I got a pump. After a month with Basal IQ software and Novolog, my A1C was down to 5.9. I was surprised but very happy.
My next appntment a month later was when they were supposed to authorize my getting Control IQ software. I walked in expecting them to compliment me on my hard work and progress, and need to explain that it was a side effect of getting the data the new software needed to work right, and to do that, I’d been on a very restricted diet.
The endo’s reaction - “5.9 is dangerously low”, and went into narrative about how a relative had died of hypoglycemia. So I told them that I wasn’t trying for a low number and I didn’t think I coud keep it that low.
Then they looked past tne A1c number on the Tandem report to see my month with 93% Time In Range, 0 lows, and my daily carbs which were down from where l’d started.
Later I pointed out to them that the unchangable target BG of Control IQ is 110 mg/dL, that an EAG of 110 is equivalent to an A1C of 5.5.
My endo-mechanic hadn’t been thinking about what the system and software they approved could do. All they thought about was protecting persons with badly managed diabetes using old technology from making deadly mistakes.
I feel sorry for them - the doctor and those patients. I know I don’t like using a badly maintained machine and I don’t like servicing a neglected one.
Fortunately, the diabetes educators of that practice are more aware of new successes, than old failures.
Very good analogy but remember that on this forum is a concentration of knowledgeable and motivated people with diabetes. The system and software is limited by the user. Many (?most) people aren’t that capable or interested or motivated, and for them getting a sub-6% A1C requires a lot of lows, to the point that they lose hypoglycaemic awareness, crash their car, have a seizure. . .
By the virtue of their training, most MDs are conservative, adopting change only after a lot of good evidence and this often means sticking with outmoded ideas of course.
On the other hand, there are plenty of fancy new ideas and tech which turn out to be useless at best or downright harmful. And we should be grateful when the docs didn’t jump on the latest fashion bandwagon.
I have been on a nondiabetic med for about 30 years. Newer and fancier meds have come out and docs wanted me try. I did on 2 separate occasions years apart. Both times they were worse.
You never know
The thing is, with Control-IQ if the diabetes educators who are supposed to educate the users AND verify that they have the basic skills to use a pump would do a very few things, the users would only need to know a very few things to be able get low 6 A1Cs, and fewer to avoid hypoglycemia. It’s far more likely to fail to deliver enough insulin than too much unless the user doesn’t count carbs well or overrides reasonable settings.
imo Its unethical for a doctor to prescribe the use of a medical device that the user or their caregiver is not capable of operating properly and safely. Knowing that the patient can do this is why doctors have to approve pumps and provide assurance of trainuing.
After that the doctor’s responsibiliity for safe operation declines to periodically checking to see if the device is providing the desired effect. It’s like with a driver’s license. The driver is tested that they KNOW HOW TO DRIVE, pull off the road and oark, not change tires or troubleshoot engine failures.
I’m generalizing ftom my individul experience, but if a doctor is afraid of a patient killing themself using a pump wrong, then why is the patient eduation they are responsible for verifying so poor?
I say that because of what I’ve been reading in these forums. Motivated users have questions how to get good result from a pump and while some are about why to use particular stuff, and practical mechanics of the stuff they use, the rest all relate to “settings”, how software works and dose timing.
Diabetes medical tech didnkt just appear from nowhere with no precursors, it evolved very slowly, with insulin being the first actual “medical miracle” of the 20th century. There’s no excuse for even an old PCP to not know the fundaments of using what’s been on tne market for 3 years when it’s only slightly different from what came before starting 40 years ago.
It’s covered in continuing one hour medical education lessons that are free. I know because I took them just to see what they covered. I recommeneded one to my PCP. Why doesn’t my “bi]oard certified” endo know this stuff at a intuitve level?
If this were a required high school class topic, all that could be covered in less than 1 hour with a short handout, a quiz and a 1 hour review of what wasn’t learned before the first quiz. All but the willfully ignorant or actually incapable would pass.
When I was “turned loose” with a pump on a Friday afteroon I was simultaneously changing from Novolin. The doctor made a guess at my ICR, hadn’t a clue what my basal rate or profile were. I wasn’t given any direction what to do or how to do anything but load the pump and give a correction.
Within 24 hours my BG rapidly trend upward so quickly that I was having to correct for literally everything the pump did -even correcting its corrections. But it was delivering enough insulin that there wasn’t anthing that I could identify that was “broken” besides the settings. No one was available to answer any questions that arose during the weekend. I coudnkt reach them by phone or hospital email. Thir phine systen had a waiting queue on Monday of more than an hour. No one got back to me until late Monday morning
A person less experienced than I following the directions I was given and trusting the doctor could have gone so far hyper or hypo as to need an ER.
I had to figure out my basal profile. I had to figure out my meal ICRs. Doing it was harder than it needed to be and took much much longer than necessary because I didn’t trust myself to make large calculated changes in the pump settings. I wasted days waiting for responses from the endo that never came. I didn’t find confirmation that I had gone about it right until after I was nearly done.
WTF wasn’t I given the simple directions I needed to do this work before I had a pump attached to me, either by the pump maker in their manual and handbook or by the diabetes educator? [/RANT]
My concern about this is why I’m in forums like this and steer people to them. Maybe it’s lack of imaginatin on my part but I can’t imagine anyone with T1D who has access to today’s tech and who isn’t motivated enough to earn how to stay alive and to live well as they can. The people who come here are all smart enough to learn how to this relatively simple stuff. Lack of motivation doesn’t explain why they weren’t given the information in a form they could understand and use - by their doctors.
A person with a chronic condition shouldn’t need to demonstrate their level of motivation to receive training how to manage it.
It was not an analog. It was a statement of fact, an acknowledgement of reality.
Medical doctors are mechanics. So are engineers, of which I’m one. Both professions use practical knowledge of things we and our peers don’t fully understand to get practical results. Very few of us progress to the level of researcher or scientist
I fully underatnd the load that the 8000 endos in the United States have, compared to thye +200,000 PCPs, but the PCPs don’t generally have multiple specialist educators working with them who could educate them as well as their patients.
Both are overloaded, but no one seems to be working on how to change that or to optimize what they can do. Instead finance-motivated practice managers and hospital admins look to forcing more work out of them without really changing how they work or how they are updated with new knowledge.
What irks me is when a profession that’s been around since the first skinned knee hangs into a obsolete guild system and does not practice effective internal quaity control, or knowledge and resource management, so work gets imposed on them from outside.
We won’t ever get to a point where doctors and staff will be this vigilant. Pumps are supposed to make things simpler.
But there is just too much to learn.
I think I know more about my pump and type1 diabetes than my pcp. But prob not as much as my nurse practitioner.
We diabetics have to take this on ourselves, we need to educate ourselves and push forward with our care.
The people who let it slide or can’t grasp the technology or methods they are using will eliminate themselves from the equation eventually.
I fell like I know a lot, and yet it is still a full time job that never relents, it’s not reasonable to expect a doctor could ever have the time it takes to get a patient to that point.
We have to want it and willing to devote our time and effort
My domestic partner answered the phone Friday when a call from an endocrinology center came in asking if I’d want to make an appointment. And where did this call originate? In Seattle! That would be approximately 268 miles round trip from my home. And I had already been having trouble handling 160 miles round trip. The lady said she’d call back this morning when she might reach me, though the call never came.
In the meantime I decided to see if I could just find a different PCP closer to home. I had no luck finding one in one of the towns near me or where my current PCP is located who was both taking new patients and accepted my Medicare gap insurance. I did, however, finally locate one an 88 mile round trip from me. Even that is further than I like, due to the larger number of trips I’ll likely need to cover all my ailments. But from her photo on the web, she looks to be considerably younger than the previous PCP. So it is not likely that if she is still hanging on to the “rules” she learned in medical school about diabetes, it at least won’t be from thirty-some odd years ago!
Not sure what I am getting at? take a wild guess. And, my grandfather did lab work at Quest Diagnostics. His A1C was 5.6 and his A1C in 2010 was 5.6. His fasting blood sugar was 99. Sorry, but that is not pre-diabetes. nor is it diabetes. Even if he was pre-diabetic you don’t prescribe Januvia. Doctors are clueless. Want to know how much time they spend studying about Diabetes in Med School?
Yes, it can be very challenging to find someone T1 competent in a more rural area! Not to say there’s no one but, if you happen to find someone local who fits, you bless your lucky stars.
Wow, sorry you are going through this. There is NO way I would travel any distance to see anyone anymore unless it was for something specialized etc. I hope you can do tele-health and find someone closer if not.
No video visits are allowed?!?!?!?
I met with a new PCP yesterday who will be replacing the one who “fired” me from diabetic care for having an A1c too low for his expectations. It is a 20 mile greater distance, so that doesn’t please me, but it is certainly better than having to go more than 100 additional miles each way to see an endo, which is what the previous PCP wanted me to do.
When the new PCP asked about why my last PCP and I were having irreconcilable differences and I said it related to my A1c, she naturally asked what my last A1c was. When I replied “5.4,” she said with great emphasis, “Oh, that is definitely way too low!” I was a little concerned at that point that things were not looking good and I was at this point only two weeks from when my previous PCP would cut off my ability to get insulin on a prescription pad of his. But she quickly brought another doctor in and he assured me (and the PCP), while pointing to my “very low” measure on my AGP Dexcom report that that was the only section they were really concerned about. And since I had only 0.3 percent very low again this time, and I said I did have symptoms when my blood sugar got that low, he didn’t seem particularly concerned.
The new PCP was concerned that I was taking two medications that when taken together for an extended time can produce heart problems, so she ordered an EKG, which I had before I left there. She seems nice enough, though I expect I will have to do a bit of training about type 1. I fully expect that she doesn’t have many other type 1 patients.
@Uff_Da Sounds pretty good! Yea, at first I would have been upset about her initial remark. They have said most pcp’s will only have one type 1 patient in their life.
Crap. You can’t have that Doc on your books. When you fill out the DMV paperwork (in MN), you have an option to prevent needing to have a doc sign for your license. I would feel concerned about having this doc responsible for signing my forms.
The form will ask you if you have a medical condition that might lead to loss of consciousness. The option exists to check YES or NO. One checkbox leads to needing the Doc to sign for you, and one does not. Only you can choose. You all know which box I checked.
Crazy stuff from the OP, and how out of touch their Dr is. Personally I’m with Marylin here, in that I don’t do doctors unless I need something from them. I manage my diabetes (type 1) and they can stay the hell away from me. I use my gp and he prescribes what I ask him for. My a1cs are in the 4s. I am considering going to my old endocrine dr soon for a visit as she was always good with very low a1cs. I use heavily self diluted insulin in .25 .50 and 1 unit and aim for flat lines. I use pens and syringes.
It’s not just PCPs. My endo started on a rant when my A1c 6 months ago was 5.3. They wanted me to lower my very carefully created basal profile across the board despite my not having any hypo in 6 months.
I had to do the research and sen them linkd to the papers that pointed out the precision inaccuracy of the A1c and how numbers below 7 bore very little relationship to the wuslity of control or health of an individual and varied with race and health conditions like kidney disease.
(I found a very interesting analysis of the DCCT snd ithe longitudinal followip of the that showed that in the cohort that was used for coming up with the correlation between A1c complications and average blood glucose levels had more than 25% of the member with aversge glucose level more than 10% off the conversion vhart -and the discrepancy was greatest for those with well controlld low average levels and no hypo.)
I also provide my enfo withbinformation on time and range, and how to read an ambulatory group close profile. I mentioned in feedback surveys that from what I was seeing of the denied insurance claims they were losing money by not using the right codes and reviewing my CGM data using the online access that the Tandem rep set up for them.
My last A1c was 5.2 and the only comment my endo made was I should keep doing whatever I was doing.
I don’t know if I was responsible for the change in attitude or the endo finally had a serious conversation with the diabetes educators one of whom is an insulin wearing type 1 diabetic who motivated me to start with the pump.
I do know from my reading that those of us who have well-controlled diabetes and low numbers are a small minority. When a doctor spends most of their time unsuccessfully trying to convince diabetics to get their control good enough to get their A1Cs under 8, someone in the fives looks like an alien from another planet.
What I noticed about A1c is that when I have many hypos my A1c drops. I therefore tried to convince my cardiologist that a more reliable indicator is TIR ( time-in-range). But disagreed with me. I guess he’s of the old school when A1c was the yardstick.