I’ve had diabetes for eleven years, about ten of which were under the care of a wonderful endo. He retired a couple of months ago and because driving long distances to see a specialist is necessary for someone living in our rural community, I decided to ask my new but pushing age 60 PCP if he would supervise my diabetes so I could avoid making the painful trips. Since my endo had got me to a good start and had been telling me I “had this” to the point I could be advising many of his other patients, I guess I expected the PCP to basically let me continue to do my thing and just write the necessary prescriptions. Was I ever wrong!
I had shown the doctor a printout of my Dexcom report three months ago and he was pleased to see my 91% time in range, 4% low and under 0.3% very low. The report last week was the same. But this time he had an additional item of information. He had ordered an A1c and had the report in hand.
His comments, in an elevated pitch, went something like this. “But an A1c of 5.4 is totally unacceptable! That low an A1c is dangerous! You are taking entirely too much insulin! I want you to take just three injections for your meals. No more corrections! I don’t care if your blood sugar is in the 200s. You don’t need corrections! Well, it sounds like at your age (I’m 80) you aren’t going to listen and will just do your own thing, so I’ll give you three months to find another endo. (Those weren’t quite his words, but it certainly was the implication.) No doctor in this country would accept an A1c like this!”
Apparently the clinic has some system for finding referral doctors, this doctor isn’t directly involved. I doubt I’ll be able to find another endo any closer than my last one, which was 160 miles round trip. I have an inoperable condition that makes riding any distance, sometimes as little as 25 miles painful. Plus I don’t drive out of town and have to get my domestic partner to drive me. He’s no kid, either, and has his own medical problems. So this is not a happy turn of events.
I wish I’d asked the doctor how he thinks having a larger number of high blood sugar days is going to make my control any safer than less than five minutes a day of very low blood sugars. Oh, and that five minutes includes the false lows I typically get with a new sensor before it is fully calibrated!
There was a time when any HbA1C below 6 was dire news. (Multiple lows, hypo unawareness, seizures, car crashes, hospital admissions, sudden death). Now, with CGM, and awareness of where you’re at, it’s a non issue. It’s all about TIR which in your case is excellent.
Your doc needs to spend some time gaining understanding if glucose management with T1DM patients!
Even most endos are having a hard time readjusting their thinking that an A1C below 6 is acceptable and in most cases they are probably right. People in our under 6 A1C’s and well-controlled thanks to Dexcom are few and far between. You are asking your PCP to understand and deal with an area that is not his specialty, most likely not up to date on Dexcom trends and idiosyncrasies, and dealing with you as an exception to an exception.
If you are on a pump, you may want to consider going MDI as one of the main reasons I stay MDI is that my endo is a 170 mile round trip and on MDI, only 1 visit every 180 days is required to keep Medicare Dexcom compliant vs 90 days on a pump.
Additionally, since covid, the Medicare rules have been relaxed and some telehealth visits have been acceptable to meet Medicare requirements.
Your PCP is not going to change his mind any more than you are going to change your mind so it is time to agree to disagree and find another endo that is familiar with Dexcom.
I am so grateful for my PCP/Endo, I had been getting A1cs of 5.8 for years, and he was very happy with that. When it went down to 5.6, he mentioned it, and we both knew it was because I’d been getting increased lows. Got it back up to 5.8, and he was fine with it. And, he’s almost retirement age.
I’m moving to another state in the late fall anyway, but I am absolutely dreading finding another pcp or even an endo who will let me do my thing and not try to micromanage my numbers. In fact, if my current doc doesn’t plan to retire for a couple of years, I may just continue to use him as my endo, as I’m only moving about 1 1/2 hours drive away.
amazing how some docs want us to manage our disease, but then become afraid because we’re managing it too well. I think as long as we’re honest with ourselves about lows, ain’t nobody’s business but our own!!!
I would maybe explore the telehealth avenue. All sorts of places are offering it now, I’m just not sure how you find out who is open to what? Joslin does telehealth visits, not sure about insurance coverage or what that entails.
It’s also possible that an internist near you might be a better choice. My past internist was great, but didn’t know hardly anything. But was willing to prescribe the necessaries. The brand new graduated internist I still have saw my 5.2 A1c 4 years ago and said don’t go any lower than that. But she never comments on it anymore even with the last being a 4.9. But she does know I see an endo.
But I would switch doctors, a doctor that is telling you to limit what insulin you take is nuts with no corrections no matter how high??? He has no concept of DKA, I admit at 80, long term complications probably aren’t in the cards, but healing time of being too high all the time isn’t good either, besides a few other things like eyes and kidneys. Honestly telling you to not take corrections no matter how high is showing how ignorant he is about it. If he wanted a higher A1c from you, then discuss why and how to safely go about it, maybe to try some adjustments. But just to say 3 shots and no corrections? He probably has no idea what the Dexcom reports actually mean and I bet he read a brief something that warned of A1c’s under 6% and doesn’t have a clue about how you get there makes a difference. So I would switch…he honestly would seem scary to me.
It isn’t his specialty and I gather most pcp’s will only see one type 1, maybe two their whole life so they don’t have a whole lot of knowledge or experience to go by…just what their books said when they studied about it. Maybe try to find out what other doctors around that might have type 1’s as their patients. You could try calling and see if there are any that have several, at least hopefully they would be a little more aware.
Sadly another example of how most medical professionals are idiots when it comes to managing diabetes and really know nothing. And I’m not absolving endo’s either. My first one was in absolute horror when I presented an A1c of 5.4 in my first appointment post diagnosis. You’re doing all the right things. I would find a doctor who’s younger and “gets it,” and explore telemedicine options. All you need is someone to order and review blood draws and provide you with prescriptions. That can all be done remotely. I have not seen my endo F2F for well over 2 years now
I would also have to add I have not seen my endo in person for over 2 years, ever since the start of the pandemic. I don’t think it’s actually necessary for an endo and telehealth has worked fine. The closest endo is over 100 miles away.
It’s clear that your PCP simply isn’t up to date with the current T1 standard of care.
I think you need a new doctor, one who understands that a low A1C isn’t a problem in and of itself, it only an indicator that helps suggest whether it’s necessary to look carefully to look at the AGP report and daily graphs to see whether there is a problem with severe lows or not.
It is only important that each endo/PCP is comfortable with their patient’s diabetes management and that each patient is comfortable with their endo/PCP’s level of management comfort. Nothing else matters as there is really no such thing as “current T1 standard level of care” since each one of us has slightly different needs and requirements and what is often referred to as a standard is merely the latest general recommendation for the general diabetic population and is not necessarily the best option for a specific diabetic.
I can’t tell you how tempted I’ve been to send him a letter with the suggestion that he might want to check with the ADA Standards of Care in Diabetes 2022 which states in part
### GLYCEMIC GOALS
6.5a An A1C goal for many nonpregnant adults of <7% (53 mmol/mol) without significant hypoglycemia is appropriate. A
6.5b If using ambulatory glucose profile/glucose management indicator to assess glycemia, a parallel goal for many nonpregnant adults is time in range of >70% with time below range <4% and time <54 mg/dL <1% (Fig. 6.1 and Table 6.2). B
6.6 On the basis of provider judgment and patient preference, achievement of lower A1C levels than the goal of 7% may be acceptable and even beneficial if it can be achieved safely without significant hypoglycemia or other adverse effects of treatment. B
With the numbers I provided him, it would certainly be a stretch to say I’d been having “significant hypoglycemia.” Of course, he could always say that in his provider judgment, no diabetic should have an A1c under 7%. So I’d still lose.
No, I’m not on a pump and really have no desire to try one, even though I understand that much of the cost would be covered under Medicare. The fact that only one doctor visit every 180 days is required to be Medicare Dexcom compliant is an advantage I hadn’t thought of.
I did have one telephone consultation with my former endo during COVID. When I asked for a second one, he said one per year had to be in person. I’m not sure if that was Medicare rules or state ones.
Finding another PCP who is an internist in our rural community is likely not an option. I thought I was lucky to find one who was a doctor at all with finding the one I have who just wanted to boot me out of providing care for my diabetes. And he IS an internist.
But a year before, when the PCP whom I’d had for 30 years left for another practice, the only PCP I could find within 30 miles who was accepting new patients was a nurse practitioner. Such is life in a rural community. When my nurse practitioner PCP left for another larger community, that’s when I found Mr. No-corrections-at-all, and he was the only doctor locally then who was accepting new patients. They had not yet found a replacement for the nurse practitioner then, but perhaps they have by now. I suppose I could see if he/she would be willing to just write the prescriptions I needed without doing much as far as trying to direct me. My previous endo told me about eight years ago that he didn’t think I really needed an endo. I only continued with him because my PCP then would have tried to micromanage me and I’d have ended up with worse control.
I now live in what is considered a rural area…but not really, yes in some ways, we are rural, but we also are a tourist destination. We don’t have an endo on island. Before the pandemic she would fly in once a month, but most people don’t see an endo here. We have a diabetic education department that gets scripts for whatever people need that was probably put in place out of necessity. They see type 1’s and type 2’s. When we moved here I signed up with the only internist here, who was also brand new here and a new doctor, that said she knew nothing about insulin pumps and got me into the visiting endo. It turns out the diabetic education department can oversee care and write scripts for pumps too, but I don’t think she knew that at the time…
But I have a feeling the endo will just do telehealth visits for here from now on because it has worked out well. But I know @Marilyn6 just sees her regular doctor and he writes whatever scripts she needs. I don’t believe he messes with “managing” her diabetes care for the most part, just writes the scripts?
So maybe telehealth with an endo at a distant group? I am wondering if you can call other doctors and say your endo retired, you need someone to write scripts that you are a type 1 and maybe get a new doctor? Or an NP or PA. I just think it’s scary having a doctor that has the mindset that yours does without the understanding of how sick you could get. But I am not in your shoes. I know a lot of us are always worried about having to change our doctors and who we will end up with. Good Luck, not an optimal circumstance for sure.
I completely agree. My previous endo before I moved out of state used to scold me and get angry when my A1c’s came back in the 5’s. He wanted me in the 7’s. It was awful as he didn’t even want to discuss this issue. The only reason I saw him twice a year was for blood work and obviously for prescriptions which at least he supplied. When I moved, I found a Type 1 endo who I really like. When I first went to him, he was so pleased with my blood work results, and it was nothing like my previous experience. Telemed appointments work just fine, and I did them in 2020 during the height of the pandemic. The office isn’t close, but I don’t mind going now since it’s only twice a year.
That is correct Marie20, I just use a GP, who only looks at my A1c and says, “man, your A1c is lower than mine.” I haven’t had a doctor of any sort who has instructed me about diabetes in 33 yrs. I don’t work with a team.
If I used a pump I would definitely need some help getting started with it.
If my GP retires, I will doctor shop for another GP or internist locally, since the nearest endocrinologist is 2 hrs away. When I interview physicians I will tell them out front that I am comfortable treating my type 1 myself. So far that has worked for me. I can show them all my past A1c’s and offer to let them see my Clarity reports. I am more than willing to work with them, but I will not let a physician take over my care or say I need a higher A1c without proof that my low A1c is harming me. I have found that if I am firm about my knowledge of a disease, and can show that I know what I am talking about, that a lot of doctors are fine with my ideas of what needs to be done for me or my family.
Endo’s are like any other profession. There are some fabulous ones which are few and far between, great ones, good ones, fair ones, total disasters and everything in between. The only importance is to find an endo, PCP, or NP that you trust to give you the level of service and advice that you desire and you need to control your diabetes to your satisfaction.
Since diabetes is still largely a DIY disease to keep under control, it is important to shop around for the best one for your circumstance so that you don’t just blindly go down a route that leads to complications you are not willing to live with.
I wonder if Gary Scheiner could provide some review of your TIR and A1c that you can submit to that PCP you are stuck with? Sort of training materials specific to your numbers. Unfortunately his fee might be out of pocket for you.
I am so sorry your PCP is so lacking in understanding about diabetes that he doesn’t see how your excellent control is not a problem but something that should be complimented. Is there a chance you can do a telehealth visit with an endocrinologist and find a local lab that can do your blood work for you and send him/her the results? Perhaps your retiring endo can talk with your PCP and educate him on what modern diabetic standards are. With a TIR of 91% you are not taking too much insulin - you are managing your diabetes to such a good degree that you have normalized your glucose readings. Apparently, my endo says he is overjoyed when any of his patients get as much as 75% TIR - everything above that is icing on the cake.
My endo is pleased with my results of 95% TIR and an A1c of 5.7. Your PCP is just not aware enough of more recent diabetic trends. Good luck
