Celebrate management milestone without the doctor

For those of us who practice persistent glucose management, as in 1440 minutes of every day and 8,760 hours of every year, we watch our numbers with hope. We often aspire to reaching management goals that are long-term and difficult to reach.

It might mean breaking below a 7.0% A1c or even below 6.0% and lower. Of course we are painfully aware that our number ambitions are tempered by respect and fear of severe hypoglycemia. It seems strange to me that a non-diabetic doctor can appreciate why those of us who live with diabetes for decades are often much more fearful of long-term hyperglycemia than we are of short episodes of hypoglycemia.

I visited my endocrinologist this week, in-person for the first time in a year. The medical assistant poked my finger using a “point of care” A1c meter. I hold more respect for time-in-range (TIR) and glucose variability statistics that the CGM produces than the A1c number. My current TIR for the last 90 days or more rest at 90% 65-130 mg/dL.

I was still curious about my A1c. My last one was a year ago.

When the results came back with the lowest number I’ve seen in my 38 years with diabetes, I felt elated as my doctor, with a furrowed brow, couldn’t hide his concern. It was a weird moment.

I’ve noticed that my glucose management performance varies over time. I drive between excellent TIR while holding urgent lows (< 54 mg/dL) down to 0.1% of the time to 1.0% of the time. That means my severe lows vary from about 1.4 minutes average per day to 14 minutes average per day. I consider this entire range of hypoglycemia acceptable.

My doctor does not seem to recognize that my low glucose variability offers a lot of protection from sustained severe hypoglycemia. Even if I trend toward significant hypoglycmia (<54 mg/dL), my rate of descent is very shallow with almost zero units IOB when it does occur. This gives me more time and opportunity to address the hypo.

I use a CGM 24/7 and it has reliably, as in 100% of the time, alerted me to my low sugar status in time to prevent that condition from lasting very long or going any lower.

Doctors are much more willing to risk periods of hyperglycemia. I know the acute risk of a hypo is worth considering but I fear most the effects of longer term hyperglycemia. Things like blindness, heart disease, kidney failure and peripheral neuropathy all motivate me more than it does my doctor.

I know that I am not a typical patient for my doctor. Yet he cannot help himself from issuing a concerned warning to me. I told him that I hear him and acknowledge his caution, but things look differently from my point of view. With a low glucose variability (<= 20 mg/dL standard deviation and <= 21% coefficient of variation), I am not powering into lows with a steep angle and a large IOB head of steam.

I accept that we play a dangerous game. We must choose everyday between the acute danger of severe hypos and the much more damaging effects of chronic hyperglycemia. I choose a solution that means my glucose sometimes skips along close to the danger zone and means I avoid almost all hyperglycemia (<6% > 130 mg/dL and nothing above 250 mg/dL).

This is a basic philosophical choice that I make with my eyes wide open. It’s not perfect and not without any risk. Yet the doctor’s choice of hypers over hypos seems much less desirable to me.

Of course, I’d love to just spend 100% of my time between 65-130 mg/dL but I’m not capable of that for any time more than a day or so. Ninety percent TIR feels acceptable to me.

Doctors use population statistics and guidance from professional associations about population statistics to inform their advice. But I am a unique individual not looking for population advice from my doc; I want advice tailored to my unique situation.

And it’s not like I can’t give my doctor plenty of data to relax a little. My CGM collects as many as 288 data points per day or 25,920 data points for 90 days. But even the heft of all that real-world data unique to me does not apparently persuade him.

I appreciate the doctor’s concern but my perspective, one informed by my skin-in-the-game, is the one that takes precedence. There is no ultimate safety in life, just safer. I like the balance of risk that I’ve chosen to live with. It appears that part of the price I’ll need to pay for that choice will be hearing and acknowledging my doctor’s concerns. I can do that.

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I always take my quarterly visit with a grain of salt. Sure I have never seen a doctor with diabetes, so they don’t have that complete understanding of what my day in and day out life is like.
But I have been very fortunate that I and been able to get my goals to be our goals. Sure my goals are not as tight as yours are but they are lower than the standard. But we have come to an understanding that as long as my standard deviation is not a big number and my low are around 5% and urgent lows close to 0, he is good with my goals.
It takes a very good doctor to realize that the standards don’t work for everyone. And a good doctor will know if you can handle a new treatment plan.
I had a great one way back when, when blood testing first came out. I so desperately wanted it. I begged! And he kept telling me no. We finally discussed it and his reasoning was very sound. He knew me very well. He knew I would see a high number and react. And then get myself into trouble. When he finally relented, I did just what he feared. I had such a fear of highs that I started that roller coaster days. It was nightmarish for many years. It wasn’t until I moved west and found a new doctor that helped me with what was called intensive insulin treatment.
Having a doctor that knows you and what you can handle and what you will do, is key. I know many don’t have the luxury of having a doctor that gets it but I’m guessing with the telemedicine that is growing, people might have more options.
I am so sorry, you have this battle every time you see your doctor. You would think that after all this time, you running the numbers you do, your doctor should be very comfortable with your treatment plan. I can only say, keep doing what you do, celebrate with us, and just use your doctor for your prescription needs. You just keep doing you! You do it very well! You are one of the many roll models I have here!

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Thank-you for your kind remarks, Sally. I’ve been seeing this doctor for a couple of years now and he has generally been onboard with my treatment philosophy until this latest new milestone.

So, I have not been engaged in this treatment disagreement until now. I’ve thought about this topic a lot and I do not disagree with a doctor without serious consideration of the topic.

Yeah, if I could order my diabetes supplies and get coverage from Medicare without my doctor, I could not justify seeing my endo every 90 days. I would be comfortable once per year unless some unexpected issue popped up.

I will keep doing me! Thanks for comments.

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I am so blessed to have a PCP who is also an endocrinologist, but even more blessed that he both listens to me and trusts me. I don’t have a CGM for various reasons, but I am still running A1c’s between 5.8 and 6.1, for years now. I do tell him if I’m having any severe lows (below 50 is, to me, severe, and I don’t have more than 1 or 2 of those a month), and he and I discuss what happened and whether I need to make changes to avoid that. He also trusts me to change both my basal and bolus rates myself if I feel the need; he just asks if I’ve changed them since last visit so he can note the changes in my chart.

I think he’s due to retire in another couple of years, and I’m absolutely dreading the search for another PCP/Endo.

That is a blessing, yet I’m happy to live without it if my doctor wants to issue the standard hypo warnings based almost entirely on the A1c number. It’s nice to know that your health care provider is aligned with you but I don’t consider that essential.

The fundamental thing I want from my doctor is his/her willingness to order the lab tests I want and the diabetes Rx supplies that I need. One of the factors that keeps me loyal to this practice is the competence of the medical assistant staff who end up with the frustrating task of dealing with vendor delivery discrepancies.

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Terry, maybe I am fortunate that I don’t and never have had an endo. I know my body and how it reacts. I have only had very few real hypoglycemic episodes in 62 yrs and I have never been in DKA even though when in my 20’s my glucose levels were crazy. I have never completely passed out from hypoglycemia, and that episode was decades ago.

I walk on a tightrope, but it is my tightrope. I have never completely fallen off of it. I deal with glucose levels in the 50’s a lot in fact I need to go test because my CGM is saying I am in the midst of a severe low and I know that isn’t correct. Nope I am at 122 which I consider high for this time of the morning. I am lowering my insulin in order to stay out of the 50’s, but it is taking some time to figure this out. Time to call Dexcom once again because of a faulty meter.

I would love to stay at 80 all of the time, but I can’t. I think it is fantastic that you rarely go over 130. I try to stay between 60 and 140, but dip into the 50’s too often.

My GP trusts me to know more about my diabetes than he does and always thinks my low A1c’s are great.

You are doing a FANTASTIC job!

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Good analogy, Marilyn. There is no single glucose statistic risk point at which we all pivot. That balance of risk and reward is unique to all of us.

My glucose excursion above 130 mg/dL occurs more than you may think. Six percent of the day comes out to about 86 minutes. That’s about 90 minutes per day that I’d love to erase but I haven’t figured out how to do that without increasing hypos.

Thank you for the encouragement! It helps me.

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Terry, up until I got a CGM, every endo visit where my A1C was under 6.5% (pretty much all of them) I got a dangers-of-hypo lecture.

Now that I have a CGM, my doc can look at my hypo statistics (tiny fraction of a percent under 55, 2 percent under 70) and we can skip right over the hypo lecture and move on to other subjects.

Not all doctors are as data literate (especially in the face of “big data”) but my CURRENT endo seems to be able to follow the Clarity overall stats and able to use that as a launching point into specific days or patterns.

I have had other docs who are far less able to deal with data, than my current one.

BTW the Clarity “patterns” tool never ever turns up anything for my bg data.

For anyone who counts their time living with diabetes in decades, it seems ironic to me. Anyone who has lived through a severe hypo would never trifle with that risk. Yet doctors often warn us as if we’ve forgotten what that existential danger feels like.

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I would assume that, like me, most veterans of insulin use have had at least a couple ambulance calls or ER visits while unconscious because of hypos. But I’m not sure I’ve ever seen any cross sectional statistics. Folks don’t seem to talk about it much so I hope ER trips and ambulance calls are not common, but maybe also part of our shared insulin-using cultural heritage.

And I used to be scared s***less about the prospect of a hypo that severe, but having had a couple maybe I’m less scared now? Man glucagon is not the preferred solution for me (I was super nauseous for a whole day afterward) and would prefer glucose IV, but if I’m not even conscious then I don’t get a vote :slight_smile:

Yeah, I’ve had three severe hypo episodes in 38 years that remain memorable. The last one was 17 years ago. And I’ve lived though many more where I caught the low, treated it and moved on.

My incidence of hypoglycemia since I started using the CGM as part of my DIY Loop automated insulin dosing system is relatively low. Not low enough to ease my doctor’s fears but low enough for me.

Terry, sounds like you are pleased with your results and confident that you are safe. CGMs and Loop make a world of difference in what we can target with only slight risk.

I find that A1c’s that worried my endo 10+ years ago are very acceptable to her now. We occasionally discuss lows and are in agreement that severe lows are much more dangerous than occasional highs. If I get an A1c below 5.2, she might suggest that is too low, but there is no scolding and I actually agree with her on that. Not necessarily that I am having bad lows but that I am probably focusing on my diabetes too much and jeopardizing my mental health. But I know that these number challenges improve your mental health!

My target range is slightly higher than yours as I aim for 70-150. Control IQ does a very good job of keeping me out of the 60’s and I am happy with that. I don’t have strong hypo symptoms but I do think I feel lows more than I did prior to Control IQ. Now if Control IQ would do a better job with highs….

Congrats for an A1c that is your best ever. Since my memory is that your A1c’s tend to be higher than your CGM results might indicate, that makes the number doubly good. Keep up the good fight, my friend.

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I agree with this, Laddie. With the wider use of CGM full-time, it’s no longer credible for a doctor to directly infer a hypo hazard from the A1c number alone. Now the docs can see the full complement of data and directly assess hypo risk on the data itself.

If I didn’t have long-term CGM data, it would be hard for me to argue that the doctor is over-reacting to a non-diabetic A1c number. I do realize that my skirting of the lower end of normal glucose makes clinicians nervous. That’s the nature of their role. Luckily, I am not frightened by the glucose traces I paint each day and I am the one making the insulin treatment decisions.

While past lab A1c’s overstated my glycemia by about 0.5%, I think that this point-of-care fingerstick test likely understated my A1c by roughly 0.2% according to the 90-day CGM data average.

Thanks for your comment, Laddie!

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Tim, no ER visits or ambulance rides for me. I have used glucagon although it was decades ago. Weirdly, during the time when my A1c has been very low, I have had only one bad hypo. Fortunately before I had a CGM I always woke up when low. I have been extremely fortunate.

“The fundamental thing I want from my doctor is his/her willingness to order the lab tests I want and the diabetes Rx supplies that I need.”

Terry4 - that’s exactly what I’m afraid of when I have to find a new doctor…someone who won’t order the right amount of supplies, or the necessary tests I may think I need. Current doc is wonderful about that.

Also re hypos - two severe hypos that required an ambulance/ER trip, but those were both over 20 years ago. The first one, I had a different doctor. The second one was with my current doc, and his response was to immediately put me on a pump, despite my being T2. Lowered my A1c dramatically, and haven’t had more than a couple of serious lows since then, and even those weren’t low enough to require an ambulance.

I gradually over the years on a pump was able to lower my A1cs from 7.0 to 6.5 to 5.8, and his response to the first 5.8 was not a question about lows, but a thumbs up and a high five.

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I like this doctor’s philosophy! Do you think he would maintain this position if your A1c fell to 5.3% or 4.9% without any serious lows?

If I could do that without serious lows? Absolutely. Unfortunately, I neither want nor suspect it would be successful for me to get a CGM, for various reasons. Probably with a CGM I could get quite close to 5.0, but 5.8 is good enough for me…I’m already 75, with almost no complications (and nothing serious), so at this point I’m really not worried about long-term consequences of being at this level.

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I am blessed with an endo that seems fine with my A1c being 5.1% I believe she actually understands TIR. She has never said a warning or anything bad. She has said she’s never seen a line so flat so don’t worry about trying to control any highs better, but if I want she will write me the scripts to try things like Fiasp and Afrezza, the Libre for swimming. I do have excellent TIR so it might be different if I didn’t.

She did give me a warning that Baqsimi caused some headaches in people that used it when I asked for that script. I told her I hoped I never found out. I appreciate that warning. I just wanted it to have just in case. I know she also wore a Libre so she was familiar with it. She seems to understand our struggles with exercise highs and lows.

I am hoping she is happy and stays put so I don’t have to fret about a new endo.

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To so many of you highly satisfied and highly successful with your diabetes management styles, outcomes and your bodies:

  1. I don’t have any data to prove this, but I believe everyone who has posted to this thread (which tuforum calls a “topic”, I think) is a STANDOUT.

  2. I’ve considered myself in excellent health at 73yo, after my mere 58 years, although I’ve had more bad episodes of hypo than all of you combined, I think. TIR 83–87% past several months on a C-IQ w/ Dexcom G6, but trouble getting SD<constantly 40.

  3. I’ve pursued a closely collegial relationship with my primary doctors - er, no… with ALL my docs & clinical staffers. How else could one feel like using a physician with whom one can’t feel that way? So, yes, I’ve had to let a few go – giving the boot to those few I felt gave me the least benefit. Thus, I end up satisfied which I feel is VITALLY MORE IMPORTANT than things like agreement numbers or tests or time etc. I believe in the wholeness and interwoven interdependence of everything - but only because it is true.

So I’m trying to say is that – as we give it all we can – our lives as insulin dependent creatures still is only of première significance in some ways & in some times. But seen in the context of the rest of the thousands of thousands of seconds in a day, I try to keep in mind that the diabetes need not / must not occupy me to the exclusion of such things as several seconds of stopping a walk to observe the play of sunlight on my dirty window, of the delicacy of random sounds whenever I quiet my mind so that my brain can actually-consciously hear them, and so forth…

So yes, I’d like my control to be tighter; I acknowledge recognizing the once god-like role of the HbA1C; that I’m now using CGM-generated values instead; that I would love even better recognition by health insurance of the role we assiduous diabetics play in minimizing the risk tier assigned to us by actuarial science and that our premiums should decrease by some percentage with each half point our A1C improves (or something like that!); that I were more motivated to regular exercise than I ever am; that my infrequent brief episodes of depression (MDD, good meds) don’t hurt so bad; and so forth.

And that is how we make the world a better place (somehow!!).

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Try not to fret Terry (I doubt that you are!). We’ve had a few Endo’s that have wanted to see us to “fit” the standard T1D regime as they were most likely taught about it. I use the terms “we” and “us” because we are not the typical case either. I manage my wife’s T1D because she cannot. She has severe dementia due to multiple brain diseases. We are a team and the best doctor’s we have had caring for us seem to be the ones that remember to see us in that light!

Being placed in and treated as though we are textbook standard is very difficult to take when visiting with an Endo that does so. My days are difficult enough, so not having to worry about a physician that is constantly harping on us when our A1C is under 7 and we generally maintain a TIR at 78% 75-150 mg/dl (your 90% is fabtabulous!). We had one Endo for a very short time that wanted my wife to receive a strict 3 bolus’ per day regimen and even suggested that she wanted to take her off of her pump! (I rely on her pump/CGM even more than ever before and the latest software capabilities make both our lives a lot easier! The idea of taking her off of her pump befuddled me to say the least!)

Anywho, there are many great comments here and especially those who have had T1D for long enough to become their own expert, be it decades or a year or two can and should be able to share this expertise with regards to their own healthcare with their doctors. Even with the physicians we like I often have to remind them my wife has T1D (non-Endo physicians).

I agree with Sally7, you are one of the many roll models I have here!

Well, we make the best of what we have, go forward and carry on!

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