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From which healthcare provider do you receive the majority of your diabetes care?
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I haven’t seen my official MD in 2 or 3 years. I see an NP but really get all my care from my CDE.
But all they do is renew my insulin prescription and file the paperwork for my G6. And I have to fight for them. So basically pushing buttons on a screen. I would probably be happier with a trained bird.
I said endo but it’s really the team of my endo ( who is also my primary care doc) and nurse practitioner. I see each one alternating about 3-4 months.
I am a CDCES, so actually I manage myself. But I put my endocrinologist. It is good 2 times a year to have someone else to look at data with me. And an expert.
For the risk of sounding arrogant I’m my own caretaker. My endocrinologist helped me obtain this pump, the company assigned a DE (in a classroom environment) to help set it up. But especially when I “fell out” a year ago I readjusted my pump insulin output, then my diet, my a1C went room 7.9 to 7.1. I obtained this new 770G setup, set it up, and just now did some major troubleshooting.
While we need active medical care I’ve been taught from day 1 the doc doesn’t cook for us, doesn’t exercise for us, nor isn’t there when levels go askew.
Only once had a “hand in” team. Was taught it was up to me.
I agree with you that we have a responsibility to ourselves to learn as much as we can about managing our diabetes. We have to understand what we need to do and have the determination to make the needed lifestyle changes in diet and excercise to help achieve those ends. I’ve learned enough to be able to make changes and adjustments in my pump’s insulin delivery as well in order to do that. My endo is part of my team to help and guide me, but ultimately, the larger responsibility lies with me.
I may be mistaken, but it sounds like you don’t go to any type of medical person? I am sure I must be wrong as not only does a medical person order blood testing for other hormones/enzymes besides glucose. But yes, diabetes is definitely a disease that the day-to-day management is done by the person who has this disease.
When I first retired to Florida nearly 20 yrs ago, I used my PCP to handle my Type 1 diabetes. (Dx’d Type 1 in 1976.) That PCP nearly killed me with his advice/suggestions. I was on MDI at the time. It was evident that he was treating me as a Type 2 (despite my telling him I was a Type 1). To handle my increasingly occurring hypoglycemic episodes he increased my Lantus dose and suggested I not bolus for my meals. I self-referred to an endo (nearest one was over an hour away) who reduced my Lantus and re-educated me about carb to insulin ratios. Within 6 months of seeing the endo, I was on an insulin pump (which I had resisted for years…foolish me!)
I saw an endocrinologist in a large city practice. Since then, I have seen NPs in this practice. Now one drives to my hometown, so that’s what I am doing now for convenience. After years of living with this disease, you become your own medical advisor, not by choice but by living with this T1D full time job.
I agree after 68 years of this.. BTW I am “sweet charlie”..
Diobetologist
I go to the endocrinologist office. Never know who will walk through the door. Sometimes it’s a nurse practitioner or physician’s assistant instead of the doc.
I see my Nurse practitioner 80% and Endo 20%. The NP nows alot more about the pump, where the Endo knows the physiological stuff.
When I lived up north and went to Joslin, Syracuse, I always saw the same doctor, Endocrinologist. However, since I’ve lived in the south, I go to an Endocrinologist department in a major hospital. However, I have not seen an Endocrinologist in many years. The person I see is either a NP or a PA, I really don’t know her title, but she is not a doctor of Endo.
I have a physician’s assistant who specializes in diabetes. I had an endocrinologist who moved out of state and the hospital system where I get my care for all of my medical needs (more than I care to count and the others are not diabetes related) suggested a few endos and also my physician assistant. I find her as thorough as my past endocrinologist and since my PA works in the same office as the endos, if she would need counseling on a patient’s treatment, she can talk with the endocrinologists
I put Certified Diabetes Care and Education Specialist. I usually alternate between an Endocrinologist and a Certified Diabetes Educator every 3 months, but when I need a little extra help it’s the CDE I write to or schedule extra visits with.
The Endocrinologist I go to has a whole team. Diabetic educator, dietician, PA’s, all trained in diabetic care. They are all in the same offices and all are my care team. I mostly see the Doctor, then have the others involved when needed.
I used to see an endo once per year, mainly to review lab results. We never discussed blood sugar management details and I stayed >95% in range. Now that I’m on Medicare, I can’t get insulin or supplies unless I see someone every 90 days. To avoid wasting too much of my endo’s time, I now alternate visits between my endo and a CDE. They’re both great, but I can’t say that all the extra medical attention has improved my control.
For many years I saw the NP who worked alongside the endo. The NP was mostly in charge of patients on insulin pumps. Then I was back to seeing the endo. For the past year I had to switch practices due to insurance and the place I go to now doesn’t have others on staff so I’ve only seen the endo.
Myself. I use the PCP or endo NP for prescription support, yet my 11 years with t1 has taught me the “professionals” have no interest in how the answers for diabetics varies so widely per each diabetic, and their canned answers are useless at best, harmful at worst.
It’s a shame you haven’t encountered one of the good ones.
After 68 years T1D, I say MYSELF also !!!
In football, quarterbacks and wide receivers get the glory for scoring touchdowns, but the battle is won in the trenches by the meat-and-potatoes linemen. We all know who those guys are. It is us doing the blocking and tackling with T1D on every play.
An excellent article on shortcomings on dealing with chronic illnesses describes how the U.S. health care system undervalues human relationships, connections, and longitudinal primary care, so it’s unsurprising that it falls short so frequently . . .
https://www.nejm.org/doi/full/10.1056/NEJMp2112063?query=endocrinology
I take turns with my endocrinologist and nurse practitioner every 3 months I meet with one of them. Their advice is always the same: avoid the lows. Occasionally I get some suggestions about pump adjustments or discuss new devices but there isn’t that much more right now we can change to what I’m doing. They’re both very good about writing my prescriptions and following Medicare guidelines.
Diabetologist, missing from list oops.
It really helps that my endo is a type one. For many of the rest, it just an intellectual activity. He is compassionate and kind around the issues that we all struggle with.
Nurse practitioner at endocrinologist office. She is type 1 and always knows what’s being developed and coming out soon, which I really like.
I said endocrinologist, but most years it is 2 appointments with my MD in that office and 2 with one of the Nurse practitioners/ Physicians assistant (I forget which he is but those are fairly equivalent designations). They are usually interspersed evenly. I also see a CDE once or twice a year and every couple of years I may get a nutritionist refresher. There are often new perspectives to learn from (and discoveries/inventions). This seems much more sound to me than listening to strangers or diabetes “influencer” doctors on the internet. (BTW I haven’t read other comments so please don’t read this as a critique of others’ choices, which are entirely theirs to make. )
NP at an endocrinologist’s office. I’ve actually never been more satisfied with my care and sugars!
I said Other. I see my endocrinologist 50% of my appointments and the nurse practitioner the other half.
Myself !!
I chose Endo.
The PA or NP (unsure of their title) comes in to every appt to help set up data, current meds and my current questions, but the majority of time is spent with my Endo to make any major changes to my care. (pump changes, major insulin sensitivities, carb ratios, ….)
I see the NP or PA at the endocrinology clinic. I have very good control so they just ask if I want to speak with the endo also, but I usually don’t because I don’t need to.
I said MYSELF and I tried to explain, but I seemed to be cut off from making my comment ??
An endocrinologist was nec for me to get my CGM. I had to be referred by my primary care physician. For advice I can email endocrinologist or PCP or dietician, et al & get response w/i 24 hours. I have 24 hr/365 phone access to nurse. When I was first diagnosed an excellent endocrinologist was really helpful. Over the years I’ve relied on New England Journal of Medicine, books, peer-reviewed research, etc.. Bernstein was right: cut the addiction to carbs! I took the initiative on getting a booster for COVID-19, before my health care provider suggested it. I stopped taking baby aspirin, notified my primary care physician of the NEJM and British Journal of Medicine articles, and the health care provider credited HIM for eliminating baby aspirin!
I have been under the care of a dynamic Nurse Practitioner who specializes in diabetes care and management in an endocrinology practice and who is also a long time CDE/CDCES. I have been with her for for over 17 years and only see an MD endocrinologist on very rare occasions.
I am also a RN, CDCES with a MSN in diabetes nursing as a clinical specialty. Over the years I have had the privilege of being a patient of, and working along side some pretty dynamic and influential diabetes care providers. As a result I have learned to manage myself (as several others have mentioned in their replies), advocate for others living with diabetes, and educate/teach/instruct uninformed health care providers about up-to-date and relevant issues in diabetes care.
I see my Endo must often, but feel I get the most practical advice from my visits with my NP/CDCES, especially in terms of technology adjustments.
My clinic is dedicated to diabetes care. I see both my endocrinologist and her physcian’s assistant s needed but generally that is appointments every 90 days, alternating between, Doc and PA.
Over the past 36+ years, I have seen an Endocrinologist the majority of the time but the past 11 years I have been seeing a Nurse Practitioner who is by far the BEST specialist I have ever had. He is more knowledgeable and on the cutting edge of all new therapies. Position & title mean nothing.
Quite honestly, having had T1D for 26 years and being committed to stay up to date with the latest evidence, I get little value seeing an endo other than getting my prescriptions filled. I was finally able to find an internal medicine doc who was willing to help me manage T1D and be PCP. I initially had to provide guidance on how to write the pump, CGM and insulin scripts but it is working fantastically and am in healthy control. However, I understand the value that endos provide to many so by no means am I down playing the importance of this specialty to the T1D community.
My visits to discuss my diabetes care are alternately with an endocrinologist and a nurse or dietician CDE. I see each three times a year.
Endo. Has more knowledge about Diabetes than the regular MD. He will ask if I need training on anything. Being a cgm or pump.