I finally got an appt. with my endo after over 7 months. I had not been informed of an appt. so I called and was told I had one in a week. I had gotten my TWIIST AID pump in December and did not even see the doctor that day, except in the hall talking to the TWIIST rep. I have gotten my most help from TWIIST customer service.
My appt. was at 2:00 and I had the usual nurse BP and blood oxygen taken. Was told doctor would be in shortly. At 2:25 a strange doctor enters room, saying he was a resident. I said “you are not Dr. Lippes”. Said he was here to review my issues. I proceeded to show him some concerns on my summary of visit from 10/25. He also could not provide any guidance on any TWIIST issues. I finally said (probably rudely) “Can you get Dr. Lippes as you can’t answer anything”… That made him go get the doc who probably was not coming for another 20 min. Doc came in at 2:37 making stupid joke about the weather (took up 3 min) and when I wanted to discuss the comments about me from last visit said the NP had made those…then later said “I wrote most of what’s on that page” but would not elaborate on what he had written.
He proceeded to review my pump settings and looked at my glucose records and then with his back to me, explained any changes he advised to the resident, never explaining to me what or why. I said “tell me I am the patient!!”. He didn’t turn around but after minutes came to me to change my “therapy settings” on my phone, without telling me why, which I was able to do as I have changed them myself. He mentioned my insulin has to be raised. I told him I only got one low BS since having the pump. He told me the increase in insulin may give me more lows (that’s nice?). I also noted that my diagnosis was Type 1 and Type 2 on my medical summary…….asking “Is that to fool the insurance for my Mounjaro RX?” He said “mainly” but that someone can have both Type 1 and Type 2. (That was new info for me which I looked up on AI and got much more info on it). Type 1s can get Type 2 with metabolic syndrome issues, but Type 2 cannot get Type 1. Obesity and the usual factors can cause Type 2 characteristics. Luckily I am down 82 lbs. but now know I cannot be cavalier about not having insulin resistance. I had told doc that I was misdiagnosed for 2 years, taking 2000mg metformin a day. That’s when he told me “metformin helps prevent cancer” and that Type 1 could be 2 also.
At 2:58 he abruptly got up, “gotta go, carrying his lapttop, standing at office door, not asking if I had other questions or concerns. When checking out, I asked receptionist how long he schedules appts. for…..15 min or 30 minutes. I asked how long mine was for and she said “30 minutes”…..I got about 20 minutes, during which he talked directly and only to the resident. Scheduled for an hour.
Doc seemed way more interested in resident than me, the patient who pays him. He is the founder of the group and about 77 y.o. He made appt. for October and blood work. Another negative experience with endos….this is my third or fourth endo attempt.
Sounds like you should search for yet another one until you find one that is more attentive, less dismissive and not so authorative. If my endo tried to “tell me” to change this or that, I would laugh. We discuss but I DETERMINE what changes in Liam’s therapy…they see him for 1 hour and look at records that may or may not tell the full story but I know the full story so I will always make therapy changes myself until Liam is confident in doing it. Hope your situation with you Endo(s) improve!!!
You may get better treatment and attention because it is your child vs. a senior citizen…If I had a 4 y.o. (don’t know how old Liam is) I expect the endo behavior would be more positive.
He Is 12 now. Diagnosed at 2. But I would hope behaviors and receptiveness by endos to your own self management would improve / increase with age, not decrease! I’m assuming you’ve been doing this a long time (managing your T1D / T2D)?
I also noted that my diagnosis was Type 1 and Type 2 on my medical summary…….asking “Is that to fool the insurance for my Mounjaro RX?” He said “mainly” but that someone can have both Type 1 and Type 2.
“Type 1” is generally understood here to mean the auto-immune disorder where our own immune system destroys part of our pancrea. “Type 2” refers to a whole load of different metabolic disorders (IMO, @CarlosLuis has disputed this before) which happen with functioning pancrea.
However they are primarily diagnostic for endos so someone can have the symptoms and require treatment for both Type 1 and Type 2. That happens often enough that I believe US insurance companies must be familiar with it.
@andrea8 I agree with @CarlosLuis and others, if possible I recommend you continue your search for a decent Endo interested in a patient relationship rather than stating/writing a belief based on a few minutes of looking at data vice observance and discussion with you. Sounds like the doc doesn’t belong in an environment of working with patients and would be more suited to research vice treatment. You, the one living with the outcome, are the most important person, not the doc; he doesn’t have to live the results, you do. Alternately, if you’re up for it, tell the doc “your” expectations of him “as the paying patient.” That you expect him, to seek and listen to your comments and questions; that he needs to meet with you, listen, RECOMMEND and discuss with you the treatment based on your input AND the data collected. Then, you will BOTH decide the course of action, and eventually YOU will make the decisions after listening to his/her recommendations. You and your insurance are the ones paying and from your description, he’s not fulfilling his duty to you.
That stinks, I’m sorry that was your experience.
You could also try talking to a diabetes educator instead of an endo. They might not be as comfortable making concrete insulin therapy change recommendations (some may be comfortable with it), but in my limited experience they are much more willing to explain, to problem-solve, and to go over your reports with you and discuss exactly how they are interpreting it.
At my endo’s office, I get about 10 minutes with the endo and also get charged for a “long visit.” Luckily I have a good grasp on my therapy so I don’t need much from them, mostly the standard bloodwork and foot exams. But at the same location visiting the diabetes educators, I go straight into their office and they’re already there waiting for me. I’ve had visits from 20 minutes to an hour, actually talking together the entire time! We’ve talked about everything from “ghost carbs” to glycemic index (and things like adding flavorless fiber to pasta sauce to blunt the pasta’s BG speed) to their favorite diabetes podcasts.
@RachelMaraii Great suggestion about the CDE! I’ve been fortunate to find both an Endo and Gastro that will take the time to discuss with me and realize I’ve usually the done the needed research before I come in so I’m at least semi-knowledgeable. But I agree a CDE will likely take that time to listen as well as talk!
Do you have access to your medical records like an online portal? That way you could see everything that is written? Or is you checking out? Tell him you want a copy of this visit. If I left my Endo, I could not find another one some good luck. Hope things work out Nancy 50.
I’m just gonna be honest with you. Doctors lack the time, the skill, and the data access to evaluate pump settings and dosages. It’s horrible, but lets talk about it. What sort of resources and/or knowlege do you feel you need in order to operate your equipment safley? Do you feel like you just want someone to double check settings? Is it a confidence thing? Or, do you feel like you don’t know how to set those settings and operate the thing? I’m not trying to be rude about those questions. But I know how difficult it can be and how little access to critical information is provided.
This really falls on you. That’s the harsh reality. Tech should be increasing your ability to care for yourself, not presenting an insurmountable obstacle. I worry because there is a long histoy of docs prescribing tech in a manner that makes things MORE dangerous, rather than less. It’s totally OK to talk about that.
Our medical care system for T1Ds is woefully inadequate. Alternately, the technology and knowledge availability makes it possible for most people who dose insulin, to quickly surpass what most doctors know about managing glucose. It does take a lot of hard work, curiosity, and personal experimentation before you can become more confident. We’re all still learning!
Getting with a good diabetes educator is a great idea and could teach you a lot. Your goal, ultimately, is to become your own “go-to person” for diabetes issues. Read all you can about the topic. Think like a pancreas by Scheiner and Bright Spots and Landmines: The Diabetes Guide I wish someone had handed me by Brown are two titles you might find helpful. Very few, if any, diabetes clinicians will ever treat you as well as you will treat yourself.
Reaching out to this community can help a lot but still can never compete with gaining personal competence to treat your own diabetes. It won’t happen overnight but don’t let it discourage you.
Read a few books and report on them here. Writing can embed knowledge more quickly and better than just reading. If you don’t like reading, you can listen to most books. The writing about them is truly where the learning magic happens.
Don’t get me wrong! Endos could and should up their game. I despaired about their lack of insulin knowledge but I also took 28 years to finally own my diabetes. Once I accepted that no one is coming to save me, then I assumed a special power. Good luck!
Thank you mohee1…I did have a good CDE who is the one who alerted me to the possibility that I was not Type 2 but could be type 1 (and I was). She moved south so my association with her ended. I had already been linked with TCOYD docs and their website and many other internet sites from which I printed info on diabetes.
Yes I feel confident and safe with my AID pump…but I would like more explanation of how and why doc is altering the settings. Also I definitely did not like his discussing my medical issues with the resident while ignoring me, the patient.
So true of many doctors today…especially specialists…my primary doc is very attentive and I have had specialists who look at you directly, listen and respond to questions. Not sure how many choices I have in the Buffalo, NY area.
Thanks for the words of encouragement…I did have a good DME who moved. I learned about Dawn Phenomenan which I thought I might have with high evening BS. I feel safe with the pump but not sure if bolud advisories are accurate for my current state. Endo did say one thing…don’t overirde the bolus rec…which I have because it seems too high for my current BS and carb intake.
