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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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If only it was easy to find a provider that worked with you.
And let’s remember the hassles of the “in network” thing!
She told me that 12th of June be last time
When first diagnosed, at age 40 by my PC, she diagnosed T2. When I continually told her I wasn’t happy with the results, she called me “too anal.” I then saw an Edno who diagnosed me with LADA and my treatment has been great ever since. I changed my PC too.
My daughter’s endo started to charge us monthly to look at her pump numbers, they didn’t ever call us to adjust anything. I stopped going to that practice. I found an endo we like better and she has T1D too, which we find very helpful
I left my primary care doctor who insisted as an adult I had type 2. I went out of network to see an endocrinologist who convinced me I had adult onset (age 50) type 1. Never looked back …..
In 60 years I have had more odd behaviors and outright ignorance concerning T1D by providers than I can express. I have also had three excellent providers that I stayed with until retirement. It is sad to see ignorance of T1D still so prevalent in not only the general public, but in medical providers.
I’ve never had serious problems until just recently, and am trying to figure out what to do. My last appt. was cancelled, and the next one I could get wasn’t until the middle of next month. Problem is, that’s way beyond the date Medicare insists is necessary in order to be able to receive the next shipment of pump and CGM supplies. Going back to scads of injections isn’t the problem. Not having a CGM is the real bugaboo. I’m 83, have been living quite happily with a disease that I’ve learned to manage for 69 years, but have no awareness, anymore, of low blood sugars. I don’t think this situation is safe, but the clinic scheduler said they just could not get me in for the three-month appointment. Any ideas?
I understand your distress completely! I was about to explain that I had to change endos when my longtime endo was too busy to meet the Medicare requirement for visits every 90 days. I now see a new endo once per year and see her assistant three times a year to meet the requirement. Can you bypass the scheduler and communicate directly with your endo to explain the problem? It’s ultimately your endo’s responsibility to keep you safe. S/he might have supplies to tide you over or be able to refer you to a colleague or assistant who could help you. (My endo gave me infusion sets once when there was a prescribing snafu.) If all else fails, you could try contacting Dexcom to explain the situation and ask for sensors to tied you over. I wish Medicare would reconsider this requirement that stresses us all out and waste’s valuable providers’ time. Good luck!
A GP can prescribe the needed supplies and serve as the doctor required by Medicare for a 90-day visit interval. Even the endo could authorize a refill without a visit.
Call the CGM company (Dexcom or Abbott). They can spot you some to get you through.
I left because of many issues including not offering the best technologies (which my insurance fully covers), but the main reason was they never answered the phone. I get that it was hard to find workers during Covid (when I was diagnosed) but they are a fairly large practice and they could have retained an answering service or offered online appointment scheduling. Switched to a new endocrinologist and realized that my first endo was (is) living in the T1D dark ages.
The previous endocrinologist had difficulty accepting that I could be an insulin-dependent autoimmune diabetic because I was not a child when I was first diagnosed.
My GP was of that same opinion when I was first Dx. He told me it was anecdotal.
Wow. My cardiologist does not believe in LADA but I would not have any faith in an Endo that is that ignorant. Good you changed. When I was first diagnosed took two years to get correct diagnosis. I was so obviously not a type 2. Good luck.
Wow! How recent was that? That’s kind of scary. I can understand that with a GP, but not an endo.
I just “celebrated” 30 years as a T1D and 30 years with the same endocrinologist. He is now only working three days/week in phased retirement so will stay with him as long as I can. We have never disagreed about diabetes treatment but he became a vegan about eight years ago and would spend part of my appointment evangelizing about the vegan diet for several years, which got tedious and made me consider going elsewhere. But he has stopped. Maybe he is no longer vegan? I haven’t wanted to bring it up for fear of getting him going on a lecture about it!
Being in the medical field I am able to discuss issues with providers and we come to a mutual decision. Have happily been on MDI for two years. My provider was against because my A1c was so good on a pump. But I was sick of pumps. Changed to MDI and my numbers are still good. Around 5.6-5.8. Personally find the InPen a perfect compromise. Gives me all the data a pump does. Only thing I didn’t like was having to go back to humalog. They do not have Lyumjev cartridges. But have adjusted. So freeing to throw a pen into my purse. And traveling is so much easier.
I have had to do it twice now.
Right after my Dx, 33 years ago, my GP referred me to and Endo who was rude and abrasive. I met a nurse at a T1D seminar at the local hospital, one of the nurses CDE’s pointed me to a much better Endo. He was a teacher and he helped me understand a lot about T1D.
The second time was when I moved to our retirement home 10 years a go I looked for an Endo and found one at a large Endo group. He was fresh out of school and was new to treating patients and treated me like I was new to T1D. I found a much better one closer to where I was working and I have been with them, the Endo an d his PA for 8 years.
Don’t put up with someone who doesn’t help you.
In 2022 I switch endos because my former endo could not submit the correct clinical notes to obtain Medicare authorization to replace my infusion sites after 2.5 days. I had been noticing and mentioning to him since mid-2020 that I was experiencing higher BG’s on Day 3 and suspected poor insulin absorption due to the plastic cannulas I’d been using. My new endo did get the autho for site changes every 2.5 days and recently gave me samples of TruSteel, metal cannula sets that I tried. I immediately noticed better insulin absorption and better BG’s with the metal cannulas and am in the process of changing my infusion set RX to those. Type 1 since 1976 and pumping since 2011.
I changed because my insurance changed, but was glad to be rid of the first endo I saw when I moved to Minnesota. She would always ask me what I ate when I had high BG readings in the AMs. I hadn’t eaten anything during the night!
Lucky to have found my current endo. I’ve been with him almost 30 years now and he’s got the best bedside manner, realizes that people are still humans and bound to make mistakes, PLUS he realizes that each patient he sees has a different way of approaching their diabetes.
I have switched several times through my 60+ years of type one. Generally, it was because of overall practices. One endo had too little experience with t1d. Another spent time trying to psychoanalyze me and persuade me to become a roommate of his t1d daughter (until she died). The most recent had advocated for every possible expensive screening available, yet mocked me for being concerned about a “flu” that continued after weeks.
I was diagnosed as diabetic for my 40th birthday, put on a Draconian diet to lose 25 lbs fast, and stayed on maintenance for five years. My doctor called me when my A1C was 12. I was sent to another doctor, who ended our visit with, “I don’t know what to to with you.” His nurse overheard and sent me to a specialist 80 miles away. He did know what to do. He is a professor at a major teaching hospital. I’ve seen him for 35 years.
It was more about communication or lack thereof.
The only issue we have disagreed about trying is afrezza. He gave me an alternative with Lyumjev which has helped but but I think Afrezza would help better with the persistent highs. I am happy with Lyumjev overall and Afrezza would be a whole ‘nother’ thing. Everything else he is agreeable with me. He is pretty open and trusts my abilities to tackle new things.
Great Endo. I trust his judgement, too.
I changed because the health care provider seemed to treat me as just a number. He didn’t look past what was in the chart, which he didn’t read until my appointment.
I found a provider who viewed me as a multifaceted human. I stayed with that provider until my insurance changed.
I have not yet changed, but am considering it. My 1st endo retired. I chose a new group that, so far, I am not comfortable with, after 3 visits.
I’d love to change Endo practices, but my HMO dictates who I can use. I disagree with their low expectations of patients (not that I want a high A1C and they want it lower but that we are capable people) For a while I was seeing an NP who was great. The respect was mutual. She retired and the Dept Chief wanted me as a patient, he thought (and told the NP) that he didn’t think I even had D. First appt he tells me it’s impossible for “someone like me to have such good labs”. I was offended. Fortunately, I had hard copies of my CGM reports. From then on he was curt to the point of rude. I really wanted to ask where he learned that all people with D (of any type) must be Dx’d with 3 co-morbidities: stupidity, laziness and a propensity to lie. But he held the power of the Rx pad over my head.
I promised to bring my Mensa card to the next appt – but there wasn’t a next appt. Through friends and colleagues, I got the name of a different Endo in the practice and saw him. I eventually learned that he was trainable (hah!) and finally shared with him the experience with the former (now retired) dept chief. The new doc was horrified enough that I knew I found someone with whom I can make a team.
T1D requires us to be our PCP, so that sense of team is important.
@TrinaBlake – wow! I feel that! I quit the docs because they didn’t respect my “mensa” qualification. I was training/fighting with their egos when I countered what they said with different info about me, my body, my management. ANNOYING. I quit when I find i could but insulin out of the USA for 1/10th the cost and no prescription.
I switched endocrinologist because he was not interested in me as a whole person, and balancing diabetes management with my other health issues.
When I began to buy insulin outside the USA because it costs 1/10th the price, I was no longer forced to see a doc annually. 39 years – I understand T1 management, I get better tips and input from fellow T1s in online communities than I ever did from a physician who doesn’t have T1. I buy OTC A1c tests, and my cardiologist now writes a scrip for my Libre Freestyle CGMs. I recently contracted with a T1 coach (who is a T1) to tweak some glucose management details I wanted to wrap my head around. It’s going great, someone to just think it through, create experiments with my own blood sugar patterns to learn what I want to learn.
Switched primary doctors because I did not like the care she was providing when I was misdiagnosed as Type 2. I told her I thought I was dealing with “feet on the floor” with my blood sugar and she told me that wasn’t true and I had to be eating or drinking something to make my sugar spike and I wasn’t being honest with her. I left soon afterwards and moving to a endo to get correct diagnosis.
Fired my 1st endocrinologist (specializes in the endocrine system/hormones, not necessarily diabetes) who kept saying I was too old to be a TYPE 1. I now see a general practitioner with limited knowledge of TYPE 1, nothing of a CGM or pumps, but I can work with. Says all his TYPE 1 goes to the local diabetes clinic, TYPE 2 with poor control, but my a1C is better (sad).
Yes, I have when that option was available. Over the past 68 years I’ve been a patient of many different physicians. Insurance coverage, or lack of, far too often was the deciding factor. I once walked out of a first appointment with an endo who walked into the exam room reading my file. He only addressed me as a disease with complications, no acknowledgement of my name or personhood. I wasn’t willing to put up with that anymore and told him why I was leaving before walking out. Very fortunately, I have been the patient of several excellent physicians and CDE’s who understood the value of establishing a partnership of mutual respect and understood the need to listen/hear what I had to say and answer/research my questions. Unfortunately, the stress of the current business of healthcare has almost eliminated that possibility.
Yes, my local Endo would not let me try the Tandem pump. He wanted me to use Mini Med. We have been a Mini Med family for over 25 years, and I wanted to make the switch. So I went to the U of Penn and they supported my decision. In fact, they prefered the Tandem! I have been with them now for 5 years.
I had it happen after I was diagnosed and the only reason why I didn’t change was cause he was the only one who accepted my insurance.
I have not had to change endocrinologist as I’ve been very lucky to have ones that would work with me and listen to me. However, I definitely have had to change primary care physicians because of their lack of understanding of diabetes and non-interest in preventative care. My husband who has type 2 diabetes definitely changed his primary care physician, due to dis interest in treating diabetes and has also now started seeing an endocrinologist.
The doctor I was unhappy with was in the UK. He would not send me to a specialist, and eventually I had his nurse looking after me instead of him, and she asked me what she should do. But I moved about 5 years later to another part of England and was sent for an annual appointment with a specialist (not terribly nearby, but at least he knew a lot about diabetes!).
I’d gone with an Endo because she used to work at former military clinic specializing in diabetes treatment. She correctly diagnosed me as T1 (PCP mis-dx’d me as T2) by immediately ordering a GAD and similar tests, which I’m thankful for. However, she seemed slow to act on the results, put me on Novolog, then a few weeks later at my prompting on a G6 and added Lantus. She was OK with me having BG’s from 150-200. She had no idea what pens did 1/2 unit dosing, I did the research and told her. She had no plans to recommend a pump, again my research and request. She worked at a major regional medical group, but at every appt there were different nurses supporting the office with no knowledge of T1, I found out they were all temps from all over the country. Seemed a very odd arrangement.
They are a business I am forced to use, nothing more. They do not manage anything, I do period. We make all the choices, they can offer suggestions but we have total and sole control.
Overheard my endo yelling at another patient in the room next to and heard him threaten to take their pump away and force them to go back to injections. I don’t know or care why, I promptly switched to a different provider.
My first Endo and her assistant backed me into a corner, my first visit after being diagnosed and going at it alone for the first two months, and proceeded to tell me everything I was doing wrong. No corrections, just wrong.
Yes, in 2019, they would not give me a refill on humalog until the next month. Told my Dr. that I would reduce my carb consumption by 50%. I was not happy but in hindsight, the change was for the better. Sugar has no nutritional value anyway.
switched from the one i had as a kid-teenager, (1980-1995) He told me to eat a high carb diet to help the insulin be effective, he also said hormones have nothing to do with blood sugar control and low sugars do not show the symptoms i would get. He also told my parents I would likely only survive to 20 years old. (Sorry to share that, I guess I’m still a bit traumatized by him!)
Then switched again later due my endo no longer accepting my insurance, and once because I really wanted help getting tighter control, but my endo thought my A1Cs were fine (at about a 9 average). I do have to say, the newer endos are a lot more knowledgeable, and research has come a long way! (Or the new endo nursing staff, rather)
Never! I will never find an endo as knowledgeable and responsive and I have now. 43 Years ago, I met him and told him I needed a doctor that would listen to what I was saying. We made a deal that I listen to him and follow his instructions. My part was to tell him anything and everything going on (even if it was that his recommended treatment wasn’t working ….. I do have to back it up with good, hard evidence LOL!). He can be very blunt and says if you can’t follow his instructions, then you can go elsewhere for treatment. I get along with him GREAT and he has always held up his end of the deal. He is at the top of the ‘trust list’
When I was 12 (1981 or so) our family doctor died and my mom took me to a “diabetologist”. He gave me a ditto sheet diet–no discussion, no negotiation. I told my mother I knew more about diabetes than he did and we found another doctor, the internist who diagnosed me, Noel Robin who was very good.
I changed doctors more because the endocrine I was seeing was setting my blood glucose too high and not because of the equipment she chose.