Do you have a good Endo? How did you find him/her? Did you just luck out background/questions did you ask? Anyone have recommendation for the northern VA area (Loudoun to Tysons)? (Yes, I realize that last one is a stretch given the wide audience of this group!)
Last year, when my PCM recommended I consult an Endo about possibly being T1 LADA, he gave me list of docs. Two had retired, three didn’t take my insurance (the ones my research indicated were good and well respected by patients), two weren’t taking new patients. I finally settled on one based on her experience at Walter Reed military hospital diabetes center of excellence. But I’m not thrilled with the parts of the system she works in (Inova) and the travel distance to see her takes too much time.
Tom, you may or may not be able to find a good endo, if you decide that you can’t find the right endo for now, start seeing if a bad endo has a great diabetes nurse team or PA/NP. Having someone (endo or not) that helps when you want to try stuff is the important part. In the past we had a GREAT endo, but our insurance changed and we can no longer see her. She was amazing, and we feel lucky for the time we had with her, but at this point for us, the endo doesn’t need to add value, just not get in the way of giving us the prescriptions we want.
My advice is to look for nurse practitioners who specialize in diabetes… has been a far better experience for me in terms of their accessibility to me, etc… imo it’s just a better culture of patient centered care
I would suggest a CDE (Certified Diabetes Educator). Some are good; some are not. But all of their targets are diabetes related. You can take their suggestions or not. If you don’t tell them, they won’t know. And as long as they listen to you and write prescriptions that YOU want and need, they are fine.
The problem is 99% of CDEs can’t write prescriptions… most are RNs with a cde certification… or nutritionists with cde certification. and they can’t practice independently, so they’re still dependent on a provider to write the prescriptions… which adds another potential layer of dysfunction
That’s not a knock on them, they’re just not providers, they’re staff generally…
So find one who is an NP as well. I did and have been going to her for the last 15 years. That was after the endo I really liked a lot moved away after 2 years. Or find a GP who won’t meddle. I find the problem with doctors is that they want to be THE authority on stuff that they don’t know. I refuse to play their game. The best information is on line from people who live it. And one has to be careful there, too.
Thanks to you all for the comments and recommendations. It’s sad to think that you can have a great doc/NP/CDE and get a change of insurance that cancels the relationship that has been built. I’m retired military, so grew used to changing docs every couple of years (moved 13+ times in my career). When I retired, the military wasn’t quite done having fun. My wife and I, using my retired mil medical benefit, signed up for an “outside” doc at a practice w/multiple docs; the doc of record in their system (not the one I had been seeing) retired. Got a post card stating my wife and I had be “re-claimed” to a mil medical facility well over an hour’s drive away. I challenged it based on time/distance limitations, demanded a meeting with the hospital commander, per mil regs. The General was slightly busy running his major medical facility and his deputy decided we could keep seeing our respective docs. Score! Can’t complain too much, we’ve definitely gotten our monies worth from my mil retired medical benefits!
Reviving this topic to ask if anyone sees an endo or endo-focused NP in the Boston area that they would recommend? I am a very “captain of my own team”-type patient and currently am seen by my GP for diabetes. She is happy to write all prescriptions and run bloodwork that I request (with agreed-upon a1c and kidney checks 2x/year), but I’m thinking that it might be nice to have a practitioner with more in-depth diabetes knowledge (but it also might not… I’ve gone down that road before and have been frustrated). Anyway, if you have a fantastic diabetes practitioner in the Boston area (preferably not at Joslin or in the Longwood medical area), please let me know! Thanks so much - Jessica
Since I have fully moved across the country I’ll not be shy in saying that I went to the MGH Diabetes Center while living in Boston. It’s adjacent to the MGH main campus in Beacon Hill (which may or may not be more desirable than Longwood lol).
I saw a fellow overseen by an attending physician (PM me for names if desired). I will admit that at my first appointment I wasn’t so sure it was going to work out (they require a download all pump/CGM data for one, instead of letting me choose what to bring to discuss, which slightly rubs me the wrong way). Once I set the boundary in our first appointment that I knew what I was doing and took their advice only as suggestions and not orders, they respected that going forward and I was pleased with them. Good with prescription refills and thorough in monitoring for potential complications which is basically all I want out of an endo, but I fully believe they have the capability to be more hands on in treatment decisions if that’s what you wanted.
It seems like there is more and more a shortage of practitioners in the medical field. I learned that my vet just retired and didn’t bother to reschedule the appt with the replacing vet. Very upsetting to drive to an appt that has been canceled and no one bothers to tell you.
Definitely true, the only part of healthcare that doesn’t seem to have a shortage is well paid bureaucrats trying to tell practitioners what to do. So maybe soon you can be seen by the VP of finance. I am sure they will have a great bedside manner, but might need a little help writing the scip.
So I had an appt today with a new Endo recommended by two people from different places on-line and located only a few miles from home. He was one of the docs I’d tried to get an appt with initially, but he wasn’t taking new patients. I’m pleased to say it was a great experience! He started with a complete history review of diagnosis, family history, labs over the last year, current MDI regimen, interest in pumps, etc. He even wants to follow up on lab report side comment re: a potential kidney issue my other docs hadn’t even considered! Just in discussion it was obvious he stays current on treatments and was willing to work “with” me, while being up-front about impacts of trying different treatment on current progress. I think I’ve found a good person to work with! Now…if he’ll only stay in the local area for a while!
My thanks to the many people here on FUD, JDRF groups, and Facebook groups on what to look for, points to raise, etc.!