20 Comments
How comfortable are you having open and honest conversations about your health and T1D management with your main T1D health care provider?
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I’m very confident with my knowledge, after 25 years I cutest a variety of studies, obtain both professor ups literature and those geared towards the diabetic. Likewise I’ve experienced less than par care and understand those concerns from them as well.
Physicians are great at diagnosis. Me? I’m a 1% -er, even with Google scholar.
Or as a urologist recently told my wife, “You describe. I diagnose..” My wife struggled with that considerably as she was convinced she knew what was wrong with her. C’est la vie. 🤷🏼♂️🤷🏼♂️🤷🏼♂️
Very comfortable for the most part. The endocrine provider I worked with to co-manage my diabetes retired as of June 1st. We prepared for the transition to a new provider during the past year where I saw her every other visit and the new provider on the other every other visit. I was with her for 22 years … and I am very comfortable and compatible with the new endocrine provider who has taken over in her place.
Regardless of my “willingness”, they are NOT interested on any level. Not number, they are not interested, hard stop.
Have known my Endo for ten years and am comfortable discussing my diabetes and Graves’ disease with him. Also went to an NP for about four years and liked her also. She left after having a baby. I’m a nurse and I make a list of questions I may have before I my appointment. I keep up to date with new diabetes information and products and will bring to his attention. We will discuss what approach is right for me. The NO didn’t think I should go back to MDI because my A1c was so good but I said I would try for three months. Have been very happy with MDI for two years and my numbers are stable. I find it freeing. No tubes attached. Also would be nervous of the new pumps that make all of your decisions for you.
I was nervous also and am an RN CDE but I will say I did it in two steps basal iQ and then control IQ and to tell you the truth it does do a better job of my A1c and time in range than I ever had in 44 yrs. plus I can forget about it really when I am out and about. and I don’t carry my meter with me – just use it when I think there may be a difference, especially the first day of the sensor.
I answered “moderately comfortable.” I am very open regarding my diabetes issues with my Endo (APRN). However, I know that she is very busy and on a tight schedule. So, I try to stay on point.
In my case, unfortunately, I have a very long list of maladies; mostly related to my T1D. My Endo does not have the time for discuss my many health issues with me.
After 46 years with Type 1 with the past 20 years in excellent control, I feel I know a great deal about managing my diabetes. But, aging with diabetes presents additional challenges. I see my endo every 3 months because Medicare mandates that in order to approve pump supplies. I saw my endo this week and expressed concern that during the past month my control had been slipping with more frequent and unexplainable highs and lows. Part of that may be caused by the beginnings of gastroparesis since I have been dropping to hypo after taking a meal time bolus and then rising precipitously an hour or more later. My A1c was 5.9 which was better than I had expected. Because my control showed 86% in range for the past month (where prior results were in the mid-90’s) she felt she couldn’t do anything to improve me results. I’ve been having insulin absorption site issues on Day. When I asked her about trying out a steel vs plastic cannula, she told me I should call the manufacturer to see if I could obtain sample to try. I’ve only been seeing her since January 2022 but may need to seek other alternatives. She also wasn’t very optimistic about obtaining Medicare re-approval for changing my sites every 2.5 days vs every 3 days. Medicare approval relies upon her clinical notes of my visits. Mid-year last year, we had obtained that approval but it has since lapsed and needs to be re-justified. Anyone else here who has maintained good to excellent control feel that they are not receiving the attention from their doctor that they should get?
For what it’s worth. I deal with gastroparesis. I find that using extended boluses helps a lot. I don’t get the lows after I take my insulin.
The question is how comfortable is she at HEARING it!!!!!
Hearing “it” pre-supposes they actually LISTEN…. ; )
I have a hard time communicating with endocrinologists, I have been through 5 since diagnosed 8 years ago (4 through Kaiser) I don’t think they listen to what you’re struggling with, and they definitely are not equipped to deal with the mental side of T1D. I left appointments in tears when first diagnosed. The formulas for carb to insulin were not working for me, I was going low all the time and figured they knew best, but they are guessing the same as I was. I was told by a nurse in one of the offices that the doctor I was seeing was a good doctor, but with a focus on thyroid issues, not diabetes.
When I have appointments now I just tell them what they want to hear, I’ve learned to control my blood sugar pretty much on my own, through lots of trial & error. I just need them for the prescription.
I know what I’m saying is harsh, but at least in Denver, I haven’t found a good endo who will listen.
Brief grim smile. Not harsh in the least. They have zero training nor any interest in the mental aspects (Medicine is far more art than science). If they helped us with the mental pieces the physical would be very easy because we had the mental tools, skills, techniques to deal with whatever the physical issues might be/become. Just saying….
I once saw an Endo who told me that he specializes in Thyroid, not Diabetes. I only saw him once. But, I hear your frustration. You need someone who will spend time with you and do followup on the phone or video. Perhaps, a Diabetes Educator, and or Diabetes Nutritionist might be helpful. You also need to find the doctor who fits your needs. Don’t give up.
Absolutely, I feel comfortable talking about my overall health and T1D management with my endo. I have seen him for the last 25 years. I’m so well controlled that he has his PA see me 3 times a year and I only see him once (usually) just to get an overall review of how I am doing. I just feel that because he treats endocrinological diseases, he only has a very specialized, narrow perspective about “health.” So, if need to talk about women’s health, I go to my OBGYN. If I need to talk about my muscles, ligaments ect.. I go see my exercise physiologist. For my eye health, I see a ophthalmologist. But if any issues arise with any of my other body parts, my endocrinologist is first to know.
Until very recently, I was very comfortable discussing glucose management with my endo of 8 years. My appointment last month was not as comfortable for a variety of reasons. She was very rushed, which put constraints on discussing concerns I had. I was not pleased with an insurance decision that moved coverage of my CGM from DME to pharmacy benefit, only to learn that endo physicians had recommended it. I also wasn’t thrilled regarding an HMO sudden change that limited the use of MyChart to message healthcare staff. Charges are now applied for all staff time in replying. She defended that change and that’s how the appointment ended.
I am comfortable talking about my concerns and hearing them openly discuss possible issues and be honest with me about not knowing what the definite causes are.
I like going to a University hospital and trying to stay up to date with current medical hypotheses.
I’m extremely comfortable having frank discussions with my doctor. I figure I will get better advice if I’m transparent. I admittedly approach my visits a bit like a confessional… Recapping my BG mgmt challenges and what I think I can do better to improve them (e.g., I get busy at work and often forget to bolus before eating, this results in hours above range). It’s not forgiveness I’m seeking, but sound medical advice. At my last visit, my doctor mentioned some recently released and upcoming pump technology that might help and sounds promising.
VERY comfortable !!!!!
I am grateful to have had the same Endo since 1996. What a blessing to have this long term care relationship. He challenges me, teaches me, keeps me moving forward with the best care for me.