I was thinking about what makes a good endocrinologist and I’m pretty sure I don’t know. I’ve only seen 6 endos in my life and half of those were for single appointments. If you’ve had a good endo what made them good? Some people here have seen docs at Joslin, what makes them better than average?
One endo I saw for a while treated me like a human being which, turns out, I need in a doctor. She dug deep, learned I still buy the occasional set of Legos to build with my wife, and from then on every appointment would start with her coming in excited to tell me about what her daughters had built, that they had to dedicate a room to contain them and then shared the sadness when she realized they hadn’t played with them in six months because they were growing up.
Now I need an endo that is willing to chase down a couple of vitamin deficiencies I have in addition to the usual blood sugar management. I didn’t know that was part of what endos do till my PCP told me. I’m hoping we can collect the good stuff in one topic and leave all the bad stuff some endos do for all the other topics.
I’ve only had 1 endo. He wants Labs both blood and urine before an appointment. These are fBG, HbA1c, CBC, Lipids, Thyroid, Liver and kidney function.
When I arrive I check in and hand my pump for a download. My time with the doctor involves checking feet, going over labs and pump and G7 downloads. We often discuss current studies that we have read.
It’s a good relationship.
I have PCP, endocrinologist, cardiologist, retinologist, dematologist, urologist and oncologist. I have great relationships with every one.
Maybe it’s me, I never met a stranger and like Popeye the sailor man- I y’am what I y’am!
I have seen only one endo and he was the one who saved my life after the NP I had been going to diagnosed me as a T2 due to the fact that I was not a “juvenile.” After almost a year going downhill without insulin, which she refused to prescribe, the endo immediately prescribed insulin as well as a GAD65, c-peptide and one other test for autoimmunity. In the meantime, he very clearly instructed me in the use of insulin. I saw him for about a year before he moved away. I did feel his loss. However, his instructions were so thorough that I have been able to go ahead with diabetes management seeing only an NP CDE for all these years. I think that if I ever had the opportunity to select an endo, I would choose one who was a diabetic him- or her-self. I am convinced that no one but a diabetic knows every nook and cranny of diabetic management.
I have several endos as I have had most of my life.
I really find them have big picture focus. Yet really good at drilling down on specific issues.
My NP is in the weeds with me. She gets into the numbers and troubleshoots. I think she has a better understanding of my particular needs.
She is the one who encouraged me to get a pump 25 years ago and allowed me to try metformin even though it didn’t t really help me much.
There is almost nothing she won’t let me try.
And I feel like we are a team.
I think weather it’s doctor or NP, you need to find one that works with you and listens and helps troubleshoot.
I do t think going to an endo is really that much better unless you have a specific issue that hasn’t been solved.
90% of my care is through my NP
Instead of “good,” I would instead use the adjective “effective.”
In my experience, an effective endocrinologist supports my self-determination with their education, experience, and regulatory/licensed ability to write prescriptions, letters of medical necessity, and order labs. Right near the top of required traits for the endo is listening. I have “fired” endocrinologists who refused to answer questions or treated me like a statistic instead of basing treatment recommendations on the empirical evidence of my individual labs and other metrics.
I found my current endocrinologist after about 6 months of interviews, including being told the endocrinologist wasn’t taking new patients. I travel about 100 miles round-trip for in-person visits. I also use a concierge primary care physician for the same reasons listed above.
My first real endocrinologist was considered a best doctor by Castle-Connolly, and when I moved to NYC, he suggested another at NYU, also a best doctor, who happens to be Sotomayor’s endocrinologist.
First, the good:
The first thing I noticed was the time and thoroughness. I went from short meetings with a GP to a full hour and a thorough run-through, where everything got discussed.
The second thing, that is somewhat broader, is that it is not the doctor per se, but the practice, from the admin to the NPs. One bad apple spoils the bunch, but a competent office makes the doctor. Sometimes, I saw the NP, and that person was really the best, but within a great practice.
Honestly, I’ve been fortunate to have good relationships with my endos, one of whom would schedule me for late Friday so we could spend 90 minutes together. I wouldn’t take it literally, but he would tell me I was the 1% of his patients, and that he learned from me. Back then, we had his email and would rarely used it, except in emergencies. One time, vacationing, I forgot my insulin, but after emailing him on a Saturday, we had a prescription at the local pharmacy. Eventually, in a hospital system that allocated limited time, I was one of his exceptions that he allocated extra.
I appreciate my current endo because her information is broad, not just from her academic studies, but she keeps up with what her patients are doing. We also have a great rapport.
As for bad:
I have found those who were misinformed or lackadaisical harm my care.
My first endo was horrible. I want to start that I was misdiagnosed as a type 2 by my pcp and the endo. My BG averages were high and my pcp had tried various drugs, but it was a failing mission. They didn’t work well and gave me all sorts of side effects. So she put me on Lantus and sent me to the endo. He wanted to put me back on the drugs that had made me so sick, then he mentioned a new drug to try and I asked about the side effects and his comment was back in the old days doctors just prescribed drugs and patients took them. When I asked about my thyroid levels because they had been too high, he said they where fine. I had to ask 3 times to finally get him to look and tell me what they were. I asked him twice if I could be a type 1 as I had an uncle that was and was told no, you’re a type 2. He never tested me, I didn’t even know there were tests to ask for. I refused to go back to him after 2 visits.
I got a new pcp, an internist who added humalog and she sent me to a new endo when the practice hired one. That endo ordered tests before my first visit. When the visit started she sat down and said I have to tell you that you are a type 1. You have the antibodies and zero production of insulin. She actually went over all the bloodwork with me, mentioned the thyroid, asked me to keep track of my insulin dosing with the carbs I was eating and my BG readings before and after. Even handed me a new BG meter.
It turns out she was a LADA/Type 1, her mom was a type 1, the NP there was a Type 1 and also a nurse there was a Type 1. She talked me into a CGM and a pump. She also loved to try all the new tech and talked about the results. One time she had added a new pump that was supposed to shut off when you got too low and that it didn’t give her insulin all night while she was wearing it and it was giving her warnings. And that was good because she had forgotten she was wearing a pod, so it had worked like it was supposed too and she wasn’t getting double dosed accidentally. I saw her every other visit and the NP every other visit. Both were excellent and responded to anything you specifically asked, wanted or needed. But just the fact of knowing I was a type 1 and I had to dose for every carb appropriately enabled me to gain good control. I will forever be grateful to her. I think there is a great benefit to an endo that is a Type 1 themselves. While any endo gets tons of patients and the experience with dealing with them. No one can truly know what it’s actually like unless you are one. Plus she was really good about keeping up on tech and trying it out.
By the third endo I already had great control. I had hurt my back a few months before and commented I was dropping too much at night. She reached for my pump to adjust the settings and I said no one but me touches my pump, it’s my life. She must have made a note in my chart because she never tried to again. She has always responded promptly to writing new scripts for anything I wanted to try or decided I needed. Certainly it’s always is in the scope of being a type 1 and commonly used. But if I ask for Lyumjev, Afrezza etc I get it and at the dosing I want. She asks for tests before each visit. Adds any test she thinks I need. She knows I am taking supplements to control my thyroid and gets the tests done every 6-12 months so I (and I’m sure she) can keep track of how they are working. She will give feedback if I ask how people like certain new insulins, pumps or CGM’s. There is not really comments about control or treatment, she once told me she will never try to tell someone that has a 96% TIR what to do. I appreciate she accepts that I am probably better and more capable at my insulin treatment decisions than she would be. She seems really capable and is really nice. I couldn’t ask for a better endo for my needs.
BTW, most of what I learned ever from dosing treatment etc was from this site and others asking or me asking questions. Being misdiagnosed for so long meant I was never given any education on insulin dosing. I constantly had lows day and night and highs and no instructions on how to deal with them. By the time I saw the second endo I had learned what I needed to know from others. So I don’t know how good any of my endos would have been at teaching or helping someone to learn really. But I can say the first endo probably was horrible. He had a horrible God complex. But I can tell you I am forever thankful for this site and the people on it! There is nothing to compare to the experience of other insulin users or Type 1’s.
I’m not sure how many choices we have nowadays for endos. For me I want someone willing to prescribe what I think I might need and the doses I think I need. Mentions on anything new that they think might help me. And treating me as an individual with courtesy and respect for what I want or need. With others their needs and wants could be different.
From dx in 1983 to 2003 I was under university HMO care, and they basically just didn’t do referrals. I got assigned to whatever PCP was their go-to for “diabetes,” which decidedly meant type 2, as it eventually came to be called. They at least knew that the other kind, now called Type 1, was a thing, but mainly they acted like insulin was black magic and if you were keeping your A1c under 7 you were ok so “Shut up,” they explained. If you heard about any other treatment regimen beside R/NPH sliding scale, as when basal/bolus carb-counting MDI came along in the late-90s, the answer was YDFLNCA (You’re Doing Fine Let’s Not Change Anything). My first actual endo appointment came along when my wife got a non-university job with regular insurance and we found a practice affiliated with Joslin. My first appointment, the doc said “You’re not doing too bad considering your regimen doesn’t make any goddamned sense,” wrote me a script for Lantus and Novolog, and signed me up for a carb counting class. That was my first experience with an endo and it was life changing. I stayed with Joslin for about 10 years, later moving to a younger woman endo who was a little more engaged and up to date on things. She’s the one who, when I asked out of more or less idle curiosity how pumps worked, signed me right up for the pump transition classes and a few weeks later I was using a Medtronic Paradigm. A few years later she got me started with a Dexcom G4.
I’ve since changed endos three times, but for whatever reason I’ve had good luck. Very supportive, willing to try me on new tech, try some off-label medications. It occurs to me that while all my PCPs have been men, all my endos except the first have been women. Maybe that’s the secret? Probably doesn’t hurt that I was in the Boston area for most of that time, so Joslin and later Mass General were in-network, and when I moved we relocated within the Yale-New Haven network.
Sadly, rural America offers few choices. I, too, learned a lot online. It was diabetics on an email group (before forums) who kept telling me that I sounded more like a T1 rather than a T2 in spite of my late age of onset. They are the ones who prompted me to search for one of the hard-to-find endos who rediagnosed me as a T1 and prescribed the essential insulins. I am grateful to people like you here for sharing information so essential for all of our survival.
I switched from NPH and regular to Ultra Lente and humalog, and it was so much better that I didn’t realize the diabetes world had changed.
When ultra lente was discontinued, my doctor told me there was no alternative, which is untrue because Lantus came out at that time, but my insurance didn’t cover it yet.
My nurse practitioner suggested I try pumping.
And so I started pumping and it was actually good for me.
My doctor didn’t want me to change even though my insulin was not available. For that same reason, don’t mess with success even though my success was 7% a1c which was considered good back in 1992. Now I wouldn’t settle for that.
I have definite endo preferences based on my personal needs. I recognize that these requirements vary from person to person and matching your endo to your situation is what makes sense.
I’ve got my blood glucose management dialed in and do not need any advice in this realm. A good endo for me recognizes my ability based on the CGM data that s/he sees every 90 days.
I go to my endo primarily for prescription support. A good doctor will pay close attention to the presciptions and work well with the medical assistants (MA) in the office who do the heavy lifting for this difficult job. My endocrinologist originates scripts for my insulin, pump supplies, CGM, back-up basal insulin, glucagon and my inhaled insulin.
I make it a point to offer compliments to the medical assistants when I show up to see my endo. I also comment to the doctor the importance to me of the medical assistants who make sure my scripts get filled. We all know how the prescription suppliers and insurance companies complicate and delay. A good endo has a strong MA staff and head off Rx problems before they get my attention.
And last but definitely not least, the good endo listens well, asks appropriate questions and gives you the respect that you deserve
NOT overly averse to hypoglycemia and accepting of time in range
Should be more collaborative than directive
Up to date on technology and willing to prescribe off label
My best endo was when I was in Massachusetts. First appointment she, looked at a CGM report and told me I’m inpatient, which was and still is exactly correct. She got me started on moderate carbs which was a big help with both glucose control and weight. Never came off as critical or pressiring about hypoglycemic episodes or using tight time in range.
For me, knowledge, personality, and continuity of care. I’m happy to say I’ve had the same endo since 1991. So she knows my history; she always gives me a referral when I need one, and is very on top of both my thyroid, hypercholesterolemia, and diabetes numbers. I think being able to say exactly what you’re doing to the doctor is important. Having them help you avoid lows and highs is important, and having them be there when you are having highs and lows is also important. So I think knowledge, compassion, and availability are key. And also when they are not available feeling comfortable calling and asking questions of the staff nurses, etc. that work for them.
We have a really great endo in town. His name is Michael Tressler. I think they moved him to the U of MN.
He’s the only endo I’ve seen look at the data and do some honest analysis. He likes to do it.
He’s also a really great advocate and he’s not super risk averse. He will punch at the medical system for his weight class. He doesn’t let the system walk all over his autonomy and authority as a medical doctor. It’s impressive when you see it. It’s also quite surprising because you don’t see that very often.
