I have had the Twiist AID pump since Oct, 2025. Had the Twiist trainer do a two hour prep and then declare that “you are done with training, now go to Twiist customer service”. Twiist service is excellent and I have called them for hour long assistance about 5 times since. My endo has never seen me except out in the hallway talking to the Twiist trainer (about my settings on pump). I had an appt with endo, cancelled due to bad weather, in which he called me telling me to adjust my settings but no explanation. I have had some bad highs and three lows since…..no other guidance and not aware of any appt. I have felt “on my own” basically since I have had Type 1 (since 2022), have read the Twiist training manual for help. The trainer said “we will become good friends” yet when she told me to call, no answer, no return call or text. The most help (advising me to get CGM Libre 3) came from my dietician (now moved to other state) who also advised me to get tested for Type 1 when I was dx. Type 2 for 2 years. Thank for listening….hope every T1D does not have experiences I had.
I am sorry that you’re still on your own. Do you have an in person appointment scheduled with your endo soon? Whenever you have that appointment, it will be important to come with a list of your questions. You’ll be much happier when you feel you understand enough to be able to make adjustments to your own dosing and to trouble shoot when things seem out of whack. That comes from reviewing your data with your endo (or educator) and understanding if and how any changes are needed. Docs are busy and you often must take the initiative to get them to explain their thinking to you.
Maybe your Endo office could suggest a CDE (Certified Diabetes Educator) that could be a little more hands on. I know in my area the endos are so busy, they just don’t have the time.
Thanks for the support, but I don’t feel my Endo has any interest in me and I don’t know about an appointment but I could call and ask. I understand some of the things because of the twist manual although the trainer didn’t explain where she got her figures from like my insulin sensitivity, etc. The fact that I’m alive shows the pump is effective.
I did have a good CDE that moved to North Carolina, but she’s the one that got me the right diagnosis of type one as well as the CGM. I was diagnosed type two for two years until she told me to get tested for type one. I don’t think I need a new CD E with the pump. It just needs some an occasional. It’s been over six months since I saw the end in the hall he didn’t come in the room when the trainer was training me on the Twiist.
I was fortunate to have a good CDE but she moved, but I no longer need that but there’s really no follow up by the Endos. This is not medical guidance. I just compared to my husband has COPD and his Pulmonologist regularly calls him and has appts. Why are they so busy? The one I went to first saw you twice and that was it then you went to her PA and she never saw you again.
I haven’t had a decent doctor since before covid.
I’ve looked high and low. All the good ones left or got moved out of network.
You HAVE to get a referal from someone worth a damn. Otherwise, you will just walk blindly into crap doc after crap doc.
I finally found one today. I recall him being recommended to me by the neighborhood guys in town when I was having all sorts of trouble finding a doc many years ago.
He was great. I’lll keep him. Having a good doc makes all the difference.
It’s not as important for ME because I have been diabetic for over 30 years. It’s MUCH more important for you. But even for me, it’s a huge relief to have finally found somebody.
Yes, thanks Moeh11 for the feedback. My first Endo was recommended by my primary whom I like the one that saw the patient twice and that was it , then PA.(he was a condescending sarcastic one). I’m not sure how many there are in my area. I guess I have to call and see if I have an appointment because they sure haven’t called me.
@andrea8 I don’t know you and don’t understand what your situation is, so please forgive me if you don’t have the capability or resources to do what I recommend. I’ve commented elsewhere that a patient needs to be their own best advocate, the “captain” of their team. Understandably, particularly in medical and similar technical fields, you and most everyone starts off without the knowledge needed to understand and treat their condition; that has to change quickly, particularly if you live in an area without an adequate number of docs or minimal healthcare. With diabetes most of us are initially reliant on doctors, NPs, CDEs, for their knowledge. We mere mortals drink from the proverbial fire hose on what is our new normal. But as you’ve learned, the docs and NPs get to see us at most 3-4 times a year for 15-20 minutes (sometimes less), some take more time initially but it falls off; CDE’s get to see us at most 1-2 times a year: once for initial education for several hours, then follow-ups on diet, exercise, etc. This is the norm, there are better and worse situations. If we rely on a doctors office to make the decisions, we will likely struggle for a long while, if not permanently. If we take up the challenge and educate ourselves, by reading here on FUD, diabetic books like “Think Like A Pancreas”, and other materials (skip the Facebook and other advertisements, most aren’t worth your time or consideration) we’ll become much more successful patients, diabetics or otherwise. We become as informed as many of the medical staff, perhaps not as broadly as our doctor or NP or PA, but more about how our own condition and response to treatment. It isn’t easy, it takes time and effort. You may or may not be willing to invest, but if its a priority you will become very, if not the most, knowledgeable about your diabetes and your response to treatments. In a better world, we’d have the support of good medical staff, but that’s not the case for many of us. The folks here of FUD aren’t doctors, our advice is from our own experiences, some of it better or different than others, you get to be the judge and that depends on your own knowledge and experience level. There is help available here on FUD and elsewhere; you may want to check out the website HCP recommendations | Loop and Learn for noted good doctors in your area (its focus is on docs supporting DIY AID systems, but usually that means they docs are knowledgeable and take as much time as possible with patients). BTW, the person above that recommended having a list of questions is right on target, never go to your doc (Endo or otherwise) without a list of questions after doing a bit a research or reading up on the purpose for the visit. Sorry if this is preachy; it’s intended to help; if it doesn’t work for you, throw it in the trash! I hope you find better medical treatment and what will help!
I see from your profile that you were misdiagnosed type two for nine years? I was upset about two years taking 11 medicines a day or whatever.. I did have a good CDE that saw me monthly actually for maybe two years that’s probably what saved me her steering me toward a type one diagnosis as well as a CGM. I don’t think I could live on just testing in the morning like some of my type two friends and my brother. Too many variables ups and downs, but I do recognize the low feeling still I’m not hypoglycemic whatever it’s called when you don’t feel it.
I looked at my records and I haven’t seen my Endo since August 25 and then a phone call in January from him and not aware of any other appointments but I guess I should call and ask. And that last appointment he said I was resistant to a pump and now I’ve been on a pump since December. . As you said most of my help has come from the Diabetes forums and the TCOYD website and podcasts. Someone from the form referred me to the conference of TCOYD which I watched recorded and the two type one diabetic doctors lead it.
Yes, I was dx’d T2 for a long time because my PCP relied on his 20 yr old training that said a 58 year old can’t develop T1. Had he asked for a simple blood test, he’d have dx’d me right and I’d have had an opportunity to take meds to delay T1 onset and avoid T1 impacts to my body. I was perturbed, but it was common back then and becoming less common, but you got it too. That’s when I decided not to leave things to others, I do my own research on most things of import and ask the technical experts lots of questions, but I’ll drive the car and blow the train whistle thank you. Thankfully your CDE knew what she was doing, would that more medical folks do now. But we can all help ourselveds by becoming informed and knowledgeable.
TCOYD is a good source of info, IMO, even though they rely on donations and support from big pharma T1 sources. BTW, for anyone that’s been caught up in TCOYD’s request for cookies, I contacted Steve Eddleman directly and asked why, he contacted the website managers and its been changed so if you prefer to not be tracked (at least directly) you can do it now. Steve and Jeremy tend to tell it like it is (not as well as here on FUD, but….) and inject some humor into our collective situation none-the-less. I particularly liked their 3 donut, pizza, and alcohol episodes!
Reading this thread and others my conclusion is that I’m uncommonly lucky when it comes to physicians.
30 of my 36 years of being diagnosed T2 I was treated by my PCP.
Sometime back I asked my PCP do do a C-Peptide and antibody panel. C-P was good and antibodies negative. He had no problem ordering the test. I don’t remember what was happening to make me consider T1.
Currently my C-P is very low and as a result after consulting with my PCP I started MDI. She was uncomfortable with being my primary diabetes doctor and referred me to an endocrinologist. That’s when I started pumping.
I currently have a PCP, dermatologist, retinologist, cardiologist, urologist and an endocrinologist. All communicate with one another and value my thoughts on my therapy.
My endo time is often spent with us discussing various news in the diabetic world. March 2nd I mentioned that I thought the lack of a code for T1 with insulin resistance was unconscionable. He agreed, but pulled up some absurd codes that were humorous but never used.
Yes, I do my own research, preferring scientific papers over pop science articles. My curiosity extends to all types of diabetes mellitus not just the one I personally deal with.
I didn’t think about the funding for TYOCD. It’s not too encouraging. I think they’re funded by big Pharma but the ones I watched didn’t push drugs except insulin of course. My first Endo that I got rid of told me she’s been getting more type ones over the age of 50 for the last 10 years. She doesn’t know why but she thinks it could be viruses Vaccine related environmental I quit her or she quit me before we could discuss it. I went to another diabetic training given by CDs and they said 40% of type twos are misdiagnosed they are really type ones..
What did Damage did you get going 10 years taking all those medicines and were your glucoses high all that time?
@andrea8 Hope my comment didn’t come off as dis-respecting TCOYD, I think they’re great and they seem to maintain sufficient independence. That said, I consider many big pharmacos with a healthy degree of suspicioun; too many start off with ideals and end up chasing shareholder income rather than what’s right for the community their drugs/devices treat, let alone a cure that would likely put them out of business. It’s understandable for them and the shareholders short- or long-term, helpful for those afflicted in the short-term but not so much in the long-term.
I like TCOYD they gave me a lot of help last summer watching their conference. No but I just suspicious big Pharma is bad news for healthcare.
I take it you don't wanna share any of the health effects of being misdiagnosed for 10 years. It's so scary to hear. I was worried after two years taking 2000 metformin numerous others.
The AI summary did not capture my initial complaint with no follow up in four years from medical professionals. AI made it sound like it was only since I got my twist pump it’s been since 2022.. I didn’t realize AI summarized, but it did summarize other people’s comments, but not my initial posting.
I’ve read different figures for actual T1’s dx’d as T2’s, not sure what’s accurate, but hope those that need to be on insulin get dx’d correctly more often. I was on Metformin and Glyburide (Glimeperide [sp?] after I hit Medicare, they’re particular). Started on low doses that seemed to do something, just not much or for long, increased doses regularly, the summer of year 8 the “honeymoon” was over, everything stopped working at all, BGs rose to 300+. My PCP, who I had good relationship otherwise and seemed knowledgeable said “Maybe you’re one of these type 1.5’s” and referred me to an Endo. My perturbation is with the medical community for not recognizing and testing people, it’s a simple low cost blood test and given the growth industry diabetes you’d think it would get done. I’m not so concerned about the damage, though that’s probably occurred too, but too late now, I’ve always been a type A, but trusted technical folks to know their stuff. I still do, but now I gain enough knowledge to ask questions so I can verify it as well.
If you or other haven’t thought of it yet, all insulin dependent folks need to specifically discuss their status before any medical procedures with docs, anesthetists, floor nurses, and any hospital or ambulatory surgical center used. Put it in writing, have it put in your chart, make it a consideration before hanging an IV with dextrose or steroids or anything else that impacts BG.
Sorry, I get energized about this stuff….I’ll get off my soap box now…
I think it was 20 years before my Beta cells started to give up the fight against insulin resistance. That’s when I started Lantus.
We Type 2s would probably benefit for early use of long insulin. That would ease the Beta cell load, extending their life. Even diminished Beta function is better at stabilizing BG.
The problem is that many of my clan think having to us insulin is failure. Then there’s fear - fear of needles, fear of hypoglycemia and fear of the unknown.
@andrea8 I sympathize w/ you. I think every person on this forum with late onset type 1 diabetes was initially misdiagnosed as type 2. We did a check on this a couple of years ago.
I was wondering, where are you located geographically?
I was diagnosed at age 57 and was misdiagnosed for one week. Does that count? 