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Have you ever changed diabetes healthcare providers because you did not agree on aspects of your T1D management? (E.g., disagreement about device choices, blood glucose goals, management decisions, etc.)
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I was originally diagnosed TYPE 2, after two years diet only (with a lot of exercising) the levels went crazy. Thanks go the ATKINS diet lost another 35 but levels didn’t improve.
Asked the doc to try insulin, be kept saying I was too old to be a TYPE 1 and my ideal weight was… As he kept changing meds.
Found medical trials for TYPE 2 out of control, walking in the head doc said I didn’t belong there because I was a TYPE 1, probably 20 lbs underweight. Asked about my diet (500-600 calories, 20-30 gram carbs), said was losing muscle mass, and had two weeks to gain 5 lbs. He brought me in, because he wanted me on shots immediately. I learned a lot how insulin worked, preservatives, medical interactions. That was 21 years ago and I’ve kept learning.
“He kept saying I was too old to be a TYPE 1”
The whole point–the WHOLE POINT–of changing the nomenclature from juvenile/mature to Type1/Type2 was specifically to break the erroneous assumption that Type 1 dx has anything to do with age. And yet still these buffoons who are supposedly medical professionals say “too old to be ***type 1***” It’s insane.
I had a similar experience at the eye doctor, when the nurse asked how long I had had diabetes. When I told her, she immediately said, “so you’re type 2, not type 1.” I had to tell her the difference and that my endo said sometimes older people are type 1.
Hit them with these factoids: 40+% of new Dx’s for T1D are adults! And those who are Dx’d as children – with access to good care/supplies etc – get to grow up to be adults with T1D.
As a middle-aged adult I had a cardiac care PA and a primary care NP tell me that I was too old to have Type 1 diabetes. My reply to each of them was “Oh? Gee I didn’t realize that Type 1 diabetes from early childhood turns into Type 2 diabetes in adulthood. When and where did you receive your medical training & experience in diabetes care???”
My first endo was a nice man with a private practice. I would have liked him as a friend, but not as my doctor.
He did not seem to hold my medical concerns as worthwhile. He also felt like a snake oil salesman in some respects.
After ten years I decided to change all my doctors to a local university hospital where I was being treated for epilepsy so information could be shared. I am much happier with my doctors having shared information and being up to date in the medical field.
I have only changed diabetes healthcare providers because I was forced to by insurance.
I’ve never changed my endocrinologist for that reason, but I’ve refused to see certain nurses for that reason.
I was going to answer “no”, but I changed my answer to “yes”. For many years, I drove 10 hours, round trip, to Syracuse Joslin to see my Endo. He advised me to see another Endo, who was nearer to my home (about 5 hours, round trip. I did that for one year. But, I didn’t feel comfortable with that doctor, and didn’t feel that I was getting the attention and care that I was getting at Joslin. I went back to Joslin for many years afterward.
I have only changed providers for insurance reasons. I have an insulin pump and I manage my disease day to day. I do not need a doctor to hold me hand. If I do have an occasional question it is usually not about my diabetes, it is about insurance issues.
Yes. However, it’s a difficult decision to make as it injects increased risk into the management of your T1 diabetes. Since you’re not the endocrinologist you could be making a decision totally based on an emotional response and not reality.
It was my endocrinologist who gave me a higher target after maintaining 6.5 A1c for 20 years with too many lows. The new doctor was telling me the 6 and lower target was best – she was not current with best practices at that time.
After my pcp retired I chose a local woman doctor for that role. When I told her what my long time diabetic specialist had given me for an A1c target her response was ‘Yeah, well we will see what we think.” Next she berated me for catching her as on call doctor on a Saturday when I needed a pen rx refill. So happy to fire that big jerk.
A long time ago I was hospitalized for hyperglycemia due to pump occlusion. The hospital assigned me an endocrinologist who I happened to really like. I set up an appointment with him following discharge, but when I got to his office with my insurance card in hand, the receptionist told me that the doctor “doesn’t accept any insurance”. That hospital stay put me into medical bankruptcy.
I have been very fortunate to have endocrinologists who are very forward thinking, kind, and on top of everything for about 30 yrs. Before that I was the one who was not asserting myself enough
Endocrinologist: āYou live there? And you like it there?ā
Another endocrinologist: āDrop your basal rate .1% and call me in 3 weeks.ā
Both at initial visit, years apart, in different states.
Why I have basically self treated myself with my Primary Care Giverās help for 50+ years.
I had to change providers due to insurance, After going to all the endocrinologist in the area on those plan’s; I went back to my original adult endocrinologist as self pay. Then I found a different job.
I went to another diabetes health care provider- nothing to do with my provider. I was treated badly by the office person who was explaining how to use insulin pens. I asked a question to make sure I understood and she basically told me I wasnāt listening and was stupid.The doctor apologized and agreed her behavior was rude and inappropriate. I continued with that provider until he retired.
I went through 5 Kaiser endocrinologists in 3 years when I was diagnosed, and 2 more since. I donāt believe the endocrinologists I have dealt with genuinely care about me. I imagine anyone with a life long disease has emotional issues that go along with them, it would be nice to have someone that is supportive and caring, instead of only focusing on carb counts and A1Cās then sending you out of the door.
I have been a DIY Looper for years. My previous Endo’s would initially try to talk me out of it, since it is not FDA approved. And then, they would ignore it. I finally found an Endo who actually knows the intricacies of Looping and gave me good advice. She’s a keeper.
I changed once b/c my usual provider did not believe me when I told her I had polyuria because of my pituitary tumor. After surgery, I changed to the endo who prescribed meds to control it.
No, I have not changed providers, and consider myself very fortunate to live where I do, which is about an hour and a half from Nashville, Tn. So I have been being seen by Vanderbilt providers since I was a 10 year old, and have received 5-star care. One of my biggest disappointments was when I had to move from pediatric to adult practice!
Yes, because she didn’t respond to my phone call when I needed her help. Her answer was that she couldn’t answer all the calls she gets from patients!!!
I IMMEDIATELY changed doctors!!!
Years ago my provider was dictatorial and so rigid his approach did not fit reality, never mind not respecting his patientsā intelligence, need for flexibility, and ability to make appropriate adjustments. The day I switched to the new endocrinologist in the office I overheard at least 3 other patients asking to switch while I sat in the waiting room. But I understand some patients really liked the rigid approach.
It was in 1985 and my provider said it was not necessary to test my blood, urine was fine, and there was no need to use Regular insulin, one shot of NPH was all I needed.
Eegads!!! Danger, Will Robinson, danger!!!
Sounds similar to the experience I had in 1981 with an arrogant and out of touch internal medicine MD.
When I asked about using a home glucometer for BG monitoring and switching to MDI with long acting Lente or Ultra Lente for basal and Reg for meals, he said “Why would anyone want to prick their fingers and take more than one injection of insulin a day?” He insisted that one shot of NPH and urine testing was all I needed.
I sensed he was barking up the wrong tree and asked my ADA peer support group for help in finding a new doctor who knew how to treat T1 diabetes in a young adult who had lived with diabetes since early childhood. Needless to say I “fired” him and found a progressive and up-to-date endocrinologist through my T1D friends in an ADA sponsored young adult support group.
Would have some issues with my Endo bit mostly with office staff. They were terrible. I now see my original Endoās NP and I love her. She listens. Really listens. I am pretty opinionated maybe because I am a nurse but she hears me out and then we make decisions. I was thinking of going back to MDI for years and she always talked me out of it because my A1c was so controlled. Last year I switched and my numbers are still between 5.6 and 5.8. Like the freedom from the pump so far. Traveled recently and bringing pens is so much easier. Throw them in a Frio pack and good to go.
I marked No because I have not had these issues. But presently am considering changing provider which is Kaiser HMO because of a long lag between ordering supplies and getting them. Still on the phone daily at this point.
I take a completely different tack. At my initial consultation, I tell all of my doctors “You are a valued member of my team, however, I am the Captain. It is my body and I seek your advice and I will make the best decision given my lifestyle, and job requirements. I also inform them that I am a former medic in a big city, a bio researcher, and have many family and friends that are in medicine.
I stopped using my GP and went to an ENDO and discovered that I was Type 1 not 2 as I was being treated.
Well, yes, but also eventually learned to use the first visit to interview doctors before I got too far into the relationship so able to make the decision earlier. Specific target disagreement was definitely the issue once, whether I should go on the pump another time (just after Humalog came out, and I wanted to), but I guess always the basic issue has been who is in charge.
It was long, long ago fairly soon after I came to the US; my family doctor had been looking after my diabetes, but after a severe hypo which resulted in overnight hospitalization, I decided I did not like how things were going and found an endocrinologist who looked after me for nearly 40 years until he retired.
I changed Endoās due to a very rigid approach. I am brittle and I requested pump therapy, which the original endo refused to prescribe as she felt diet control and exercise were the answer. My current endo took one look at my log and prescribed pump therapy immediately . 55 years T1D and going strong; I never looked back.
I have changed providers for two reasons first because my insurance didn’t cover mu Endocrinologist as a preferred provider and second reason is that even though I had an appointment it took hours to get in to see her. Now I have an internal medicine/family doctor who doesn’t know a whole lot about diabetes but she tries really hard and I don’t have to wait months to get an appointment and then not a long time once I am in the waiting room.
I recently changed endo because my former endo (13 years) hasn’t been able to provide Medicare with the documentation needed to support my changing pump infusion sites every 2.5 days rather than every 3rd day. Since June of last year, I’ve experienced higher glucose levels during the last half of Day 3 while increasing inulin usage during that same time interval. Fasting glucose is 24% higher on Day 3 than on Day 1 and my total daily insulin use has increased 9% on Day 3 over Day 1. (My conclusion, even with more insulin on Day, my glucose levels are higher than on Day 1. This occurs despite frequent site rotation and is not confined to any one body site.) Due to Medicare’s “rationing” of supplies, I cannot change an infusion site earlier because I will run out of pump supplies. I frequently initiate and override correction boluses on my pump during the latter half of Day 3. (I use the Tandem t:slim X2 with Control IQ. I have also resorted to giving myself an insulin injection via syringe at times while still being connected to my pump.
WHY!!! Does MEDICARE and some Doctors , NOT understand that we are NOT all the same ??
I switched from a doctor who told me he didnāt know how to treat me to an endocrinologist who did.
At least the first doctor admitted to the problem!
I changed many years ago when the endo I had at the time suggested I gain weight to have more places to put sensors (absorption problem after over 50 years TD1). I was 5 feet 2 inches and weighed about 118.
I changed because my Dr was too far away but I did not learn much from them. Back when I wore a pump I was told by the educator not to dose for cheese when I ate pizza only for the carbsā¦ I didnāt know better back then. I have learned more in the last year listening to the Juicebox podcast than I did in the previous 30 years all put together.
I didn’t change my diabetes healthcare provider, I changed from a GP to an endo after my GP told me I was “too anal” over my numbers after being diagnosed. The endo then diagnosed me with LADA, which changed my entire treatment plan.
I changed (within my HMO practice) to another Endo because the one I first saw had a very low opinion of patients. At the first appt – before he said hello and gave me his name he said (and I quote, I will never forget this) “It is impossible for someone like you to have such good labs”. To answer that challenge I whipped out the paper copies of my CGM reports. Then I was told I was doing to many fingersticks (prior to being able to dose from CGM). To respond to that challenge I asked about his residency, when he was in his Emergency Dept rotation – how many times was he with first responders at accidents caused by an impaired driver? He never had that experience. I told him I lost count. I view driving without knowing my bg as reckless. This Endo thought my target A1C should be 7.5+ (I was 60 years old!) Never saw him again. He was chair of the Endo Dept and his attitude was rife throughout the dept. My standards are higher in that I want a more normal range for my labs, I am engaged in my care and my health.
It was awhile ago and, if CGMs were around, they were in their infancy. I was not on a CGM, so tested 8 or so times a day. I told them I was hypo unaware and all the other bits and bobs of my situation.
Even after all that, the first visit with the doctor he asked, “Why do you test so often?”
I took my prescription and never went back.
Yes, I have changed. When I was first diagnosed, my pcp was managing my regiment. He made a mistake and realized it thrn sent me to an Endo. The Endo was awful, rude and obnoxious I changed a again to a closer nicer Endo and I felt the care was very good. He was an educator. Ten years a go I moved to our retirement home and had to change my Endo again. The one I have now I like him and his PA. Ne know the physiology she knows the pump.
Several times over the past 67 years I’ve changed providers I felt were not listening, simply lecturing. Since then, when at all possible, I’ve used first appointments to interview physicians and establish a partnership model of care. If they’re not interested in working with me on healthcare decisions I don’t make a second appointment.
Great for you !!!
I have type 1 and for me, the answer is No. I have a child, also with type 1 diabetes, and yes, I have changed providers due to disagreement about device choices and management.
I changed endocrinologists after dealing for far too many years (from my teens to late 20’s) with the doctor’s penchant for needing/wanting to declare the potential of some complication from diabetes, and sending me to this specialist or that, only to be told by them that I was totally ‘fine’ – ‘no issue’. Thanks to that one person I now have “white-coat-syndrome” – blood pressure goes through the roof with most doctors on first visits.
I dropped my endocrinologist simply because I didn’t find him sufficiently useful to justify the time and expense for someone like myself who is good at self management and has no complications yet (unlike most of his patients). My primary care physician handles all my prescriptions. If I could find an endocrinologist who was a Type 1 diabetic I themselves I might consider signing up, since I think it takes one to really know one (perhaps more so than in most other specialties).
69 years ago I was thirsty, hungry, peeing all the time, sleepy driving, down to 118 lbs, 21 years old…. So my GP sent blood sample to the Lab [just for kicks] and started me on insulin the next morning…. I felt so much better and started gaining lbs up to 137.. He wanted me to increase insulin so I could reach 145 lbs according to the chart.. So I started doing what I felt was helping me on my own [staying at 137 lbs].. At about age 50 when the A1C thing started,, I started with an Endo who insisted I have “normal” A1C. Well after a few months, my memory started failing from so many “lows” [we did not have BG meters]…My GP for the last 23 years said I was doing fine wit T1D and did not advise me on it..
I find this quite specific personal history fascinating. Good work, good story, and good writing. š¤
I changed providers simply because a NP in endocrinology was making the trip to my home town. It was the same network, but they were making the trip to me rather than me driving alone for over an hour away. These apts. out of town were dangerous for me and took over half a day. I changed quickly and appreciated the service.
I had a diabetes educator who was a type 1 diabetic herself. Our management styles differed greatly. I did not appreciate her comments comparing our numbers. Also felt she did not take my concerns seriously because my numbers were “better” than hers.
I have had only one CDE who has T1D all the rest are experienced persons. So, when I have a disagreement most of the time I’m half right! If you never had Diabetes, it’s almost impossible to relate to those conditions that you have experience in private. Along with all the problems you have had with your Diabetes equipment. I’m sure there are many persons using the Tandem X2 that wanted to throw the cartridge against the wall when not getting a good penetration site into the cartilage.
On my first visit with a new provider, he said he wanted me to lose 10 lbs before we considered putting me on an insulin pump. I had a <30 BMI at the time. I changed providers and was on a pump within a few months.
Twice. Both after a move, when I had received endocrinologist referrals and they turned out to very negative. Was able to switch to another very positive endo each time. I was lucky enough to live near the Joslin Center and now the Barbara Davis Center in Denver (I’m an hour away) and have fantastic care.
I had problems in my city as a teenager under the treatment of an internal medicine physician. He did not know enough about diabetes to provide me good control, but no other choice was available. Once I was on my own, I have stayed with my current endo for 42 years.