Experiences with your Endo

Hey folks. Real quick background on me: T1D for 4.5 years, diagnosed at 29 yo. I live in a small town and closest Endo is about 40 miles away. I was fortunate enough to get in with my current Endo pretty soon after my diagnosis and he and his staff helped me a great deal in the first year or so. However, I feel like the level of care I can get from my Endo has plateaued over the last several years. Our appointments are usually very brief. I try to ask questions, like about new technology for example, and he just never has much to say.
So, I ask myself: am I not doing the right things/asking the right questions to engage my Endo, or is he just not the right doctor for me at this stage of my condition?

My Question for you all, have you ever felt like this, and did you seek out a new Endo? What has been your experience?

Many thanks.

hi @hew42087 and welcome to Type One Nation. I have had T1 for over 40 years… technically I’ve been successfully treating diabetes longer than my current endo, and my current PCP. So I tend to advocate for myself. If I want a T’Slim and a G6 I tell the endo, get my own Tandem rep, and that’s the way it gets done. I never really leaned on a doctor to take care of myself, I tune my own pump settings and make all of the decisions.

I’d never ask a endo about technology. Their experience is zero (Unless your endo is T1, and then they are a “keeper”) my endo “wore a CGM for 2 days” and considers herself an actual expert with opinions! I think you might be the only one to be able to make that kind of call. Fortunately, you are allowed to call Medtronic, or Tandem, or insulet, and make them demonstrate their products and even let you try some or all of it so you can make up your mind.

Now to be clear, I don’t interpret my own blood work, or EEG or specialty doctor trained stuff… but I do everything else.

Diabetes was at first very controversial…Its one of the only diseases where you have to make all the real-time medical decisions. Doctors’ first reaction was, in my opinion of what things were like in the early 1900’s “they’ll never be able to do this”. I learned early on that this was going to fall on me.

I wouldn’t hesitate to get a new endo if they wanted me to do something I wasn’t comfortable with. I consider my endo as my employee… if they aren’t performing they get a warning, if they keep it up they get fired.

Even if it’s not technology, even if it’s a question like insulin adjustment, you can learn it yourself or you can lean on your endo… that’s a matter of comfort level.

I hope you can figure out a middle ground you are comfortable with.

Appreciate your insight, Joe. Thanks!

I’ve had a few endos starting probably in my early 20s (prior to that I saw a cardiologist who treated diabetes as well). My experience has been very good overall - I did leave one practice when I couldn’t get in touch with my endo re a potential DKA - I was running highs I was not able to bring down and I was not getting response to several calls. Otherwise my experience has been very good. I tend to get a bit chatty and perhaps off topic so I find it best to write down any questions so I can stay on track, as doctor’s time is limited even if she is engaged. For some things I find it helpful to see the Diabetes Nurse Educator instead - there’s a new term now but I don’t recall as they can spend more time in discussion. The DNE at my current doctor’s office does training on some of the equipment - but depending on what someone is getting that might be set up with a rep.
Bottom line: whether you’re seeing a counselor, doctor or other specialist it’simportant to find someone you’re comfortable with, which includes giving you the time you need. There’s nothing wrong with moving on and they may be more comfortable treating patients with less experience.
PS - if you do decide to find someone else, in the current environment they might be willing to do tele visits. They may want to see you in person at first but since you’ve got some experience under your belt it may not be necessary to go in person - and if you have a nearby PCP they can still take care of the BP, heart check and other such exams as you need them, and share them with your endo.

@hew42087 Hi Sam, and Welcome to the JDRF TypeOneNation Forum! If a doctor is first class in guiding you in how you manage YOUR diabetes, and is knowledgable, a short drive of only 40 miles could be acceptable. After moving to Florida, I did a 65 mile round trip to let a top-notch endo guide me - well only 60 miles when it wasn’t too windy or rainy and the bridge causeway would close - then my drive was more than 150 miles.

Like @Joe, I have been proactive in the management of MY diabetes, doing my research, learning about new techniques and products, calling on manufacturer representatives, etc., and then bring my findings to a knowledgable endocrinologist [and other medical professionals] to confirm my treatment decisions. The endo who wrote the prescription for my first three pumps [he lives with TypeOne too] told me to figure out how to program and use the pump by myself because I knew diabetes better than he - he was also a professor Endocrinology. His only factual guidance for me beginning pump use was to be careful, conservative, and limit my daily total insulin dose to 70 % of what I took under MDI.

My direct answer to your question, "… have you ever felt like this, and did you seek out a new " is YES. And not only Endocrinologist, but other physicians who were not meeting my standard. I look at it this way, I have but one body, and it deserves nothing but the best I’m able to provide.

My experience w/ doctors is, they know what they learned in medical school, and they know whatever they’ve gleaned from their years of practice treating patients in their office based on what they learned in medical school, and hopefully whatever continuing education they get, and for most well-known and understood medical problems, this is great and all that is needed.

T1D is a totally different ballgame. It’s daily self-management. There is so much nuance and the whole slew of factors that determine what you need to do at each part of the day with respect to insulin, eating, resting, and exercise (not to mention other stuff like illness, stress, etc.), that there is just no way even an otherwise good endo is going to know how you need to deal with all of that. No one can, actually, but you. An endo with Type 1 is probably the only exception.

With regard to new technology, new techniques for managing T1D, new studies and knowledge-bases, I don’t think I’m being cynical in saying that most doctors, like most people (after all that’s all they are, just like us), are not going to be motivated to go above and beyond what is already required for meeting acceptable standards for their job. So, generally, they are not on top of all this new stuff (tech, better understanding of how to manage (e.g. pre-bolusing for more than 10 minutes), etc.).

My take is, and this is how I deal with this myself (and I’m only 7 months into my own T1D, btw), is to check in w/ the endo when they say they want you to, rely on them for prescriptions and getting and interpreting bloodwork, and otherwise be your own medical care professional - do your own research, experimenting (within safe and reasonable boundaries obviously), and glean as much understanding of your disease from your own experience. I’ve repeated a lot of what others have already said, e.g., be your own advocate. Tell, rather than ask, your endo that you’d like to try a new tech device, and then realize you’ll probably have to do all the learning about how to use it mostly on your own. But that way you’ll learn so much better, anyway.

Anyway that’s just my two cents!

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Thanks everyone for sharing your experiences!
Y’all hit the nail on the head. I do have to be my own advocate, and I like the idea of looking at an Endo as an employee. It makes me feel good to hear those things from you all, and has really helped me to make a decision going forward.

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One other doctor education enhancement I’d like to add, Becky, is the “medical practitioner’s willingness to learn from her/his patients”. During the last few decades, I’ve been blessed with doctors with whom I choose to consult who ask me “to teach” them what I have learned about diabetes [so they can share with other patients. My list of doctors include an endocrinologist who has T1, other endos, various specialists, GPs and internists.

And Becky, what you wrote in your next three paragraphs is a very strong statement that encompasses much that I wish I had learned more than 60 years ago. Your words are beautiful, and I encourage to to continue sharing your presence and understanding.

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that’s pretty rare, Dennis, but very cool. I once talked to a random Mom at my retina specialists office, she was freaking out until I told her how old I was. The doc was like… “here - talk to this guy”. Happy to oblige!

Yes, good doctors also learn from their patients’ experiences, and are in tune with their medical issues and how treatment is affecting them.

I don’t feel lucky to have gotten T1D, but I do feel lucky to have gotten it in a time period where we have tech available to make management more successful than in the past. At any point, all we can do is the best we can do. I hope one day I’ll be better at taming my highs and preventing lows (e.g. when exercising after eating!). A good pump w/ glucagon would help with this… maybe one day…

Have you had occasion to check out Baqsimi.- the new inhaled check of Glucagon? If course I hope you haven’t needed it but I’m curious. It sounds a lot less intimidating than “mixing potions” and sticking someone with a needle if you’re not accustomed to it.

I have not tried that, but it’s good to know of the various options available (e.g. I may ask my doctor about Alfrezza at my next appointment). Fortunately I have not had any severe hypo episodes (i.e. ones where I couldn’t just eat or drink something myself and wait for my levels to stabilize). Sorry that’s not much help! But I do appreciate learning about new products and will keep it in mind (I do have a glucagon pen)…

No problem. I’ve only had 2 or 3 instances where I want able to handle this on my own - or with a little bit of help. I have a Glucagon kit but I suspect it’s expired!

Becky @BKN480 and @Joe, concerning the statement I made about “educating doctors”, it goes back a long way. I haven’t always taken the best care of my diabetes, but being naturally curious person and a fairly good observer and analyst, I could often “see” things that other people would miss. For diabetes things, this goes back to the 34 year period when I received all my medical care at the Joslin Clinic in Boston [begun by Dr Elliot Joslin in late 1800s, now known a Joslin Diabetes Center] where I would present doctors with “little bits” and ask questions - if this was new to the doctor, he/she would take notes and then pass my observations on to the many inhouse experts. Some of my observations have now been incorporated into doctor and teaching practice; my observation skills also got me invited into discussion groups and diabetes care “trials”.

During my 21 years in Florida, I’ve built continued similar relationships with the doctors [too many] I see. The GP I first visited a month after I settled here [referred to me by a woman I knew who had been seeing him for a few years before me], has asked me to try scheduling my visits with him before his “noon break” so we can enjoy time together to talk; both he and the endocrinologist ask me a few times a year to meet with or talk with certain of their patients who have troubles getting a grasp about managing their own diabetes. Seven years ago, a specialist doctor/surgeon who had been treating one of my conditions asked me to extend my time with him and “talk diabetes” specifics; his 11 year old daughter had been diagnosed that week with TypeOne and he [the doctor] wanted my thought and guidance. That diabetes related discussion has continued, including at a visit I had with him last month.

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That’s great! The fact that other type 1’s with lots of experience observing and managing (based on observations) their own glucose levels is why I sought out the forum (and other info on the net, in books, and in podcasts). That, coupled with one’s own observations, is the best way to learn, so it’s great to hear how doctors incorporate your knowledge into their own practice with other patients. I’ve benefited from others’ knowledge and experiences, I hope I continue to do so, and therefore I would be happy to be of help to others (if I can offer any).

(On the other hand, many doctors are dismissive of their patients’ own experiences (perhaps especially when they are female and/or young and/or a racial/ethnic minority (which I am not)), so I don’t expect this to be happening everywhere w/ all doctors, but to the extent it does happen, it really is so helpful to other patients… so kudos and thanks to you and your healthcare professionals!)

One of the ways I’ve found to help other people who are affected by diabetes AND at the same time receive help, personally or as a care-giver, is through opportunities such as JDRF Chapter or Sub-Chapter meetings. In my are there is a “Cups-of-Hope” monthly morning coffee where we meet, listen to expert presentations and share ideas - successes and those that didn’t work.

Many of the attendees are parents of newly diagnosed children who are looking for emotional as well as practical advice; also in attendance are several old-timers who offer bits of diabetes wisdom. A hospital in the region gives us a large meeting room with all facilities [the diabetes manufacturing reps like this feature] for our gatherings. Some of the doctors at the hospital will occasionally drop into meetings in an attempt to hear life from those who actually live diabetes - educational for those doctors who often ask questions of meeting members.