Funny you should say that. Two of the best endos I’ve had are both diabetics and on pumps. Coincidence? I think not.
I always do it myself. If I see a pattern of lows or high I adjust the rates. I got good education on how to do this when I was diagnosed 4 years ago.
I think that is key. The people who do not start off with great education from day one have a very steep uphill road in front of them. Often times the greatest barrier (in my opinion) is even gaining the understanding of the education which is possible and which was not presented to them.
Yes I feel fortunate that I got good education from the start and have been able to have a good A1c from the start. I got a book at diagnosis that was written by doctors at the hospital that has a lot of good information. Another good reference is the Think like a pancreas.
I think one of the best tools to educate people with diabetes about their diabetes is wearing and paying attention to the data produced by a continuous glucose monitor. I think this tool should be offered and supported from day one for any person diagnosed with any type of diabetes. I recently heard it described as a “weapon of mass instruction!”
One of the tools I like for adjusting basal is Dexcom Clarity software. If I suspect my basal might be off, I get on Clarity and look back at a period of time when I knew for sure my basal dose was right, for example a few weeks or a month of lower average BG with fewer excursions into lows and highs. I can check those plots in Clarity for my basal dose (I am on MDI and inject basal in the AM). This review of past basal history is a great tool in my opinion and can help sort out basal dose after a period of “fiddling” with dosage has not worked as well as desired. For example, I took a driving trip in August (long days of driving always increases my basal need) and had increased my Tresiba basal from 19 units to 21. After I got back, I had ramped down to 20 units but forgot that 19 had been my ideal basal before the trip. Reviewing Clarity data from early summer helped me remember.
And to answer the poll question: no I don’t run those changes past my endo. I do however discuss them at my next endo appt. to get the endo’s perspective on what worked (or didn’t) and why.
After you’ve gotten started, I believe that you should make all your adjustments. There are so many factors like exercise, stress, carbs consumed, etc. that are too complex for your doctor to understand in a 15 minute appointment. I highly recommend that book “Pumping Insulin” by John Walsh. This will teach you how to set and test basal rates, bolus setting, and BG correction.
I don’t even understand this question. It seems totally impossible for a doctor to set basals other than initially. In my case I can be stable for weeks and then have to adjust my basals twice a day for a while. In between I have had big changes (over a 3 to 1 ratio) over cycles of 2 or 3 weeks. There is no doctor around at 3 am when I have to adjust!
Please keep in mind that an endocrinologist is not a specialist in diabetes, no doctor is. My endocrinologist admitted she had only a few classes covering diabetes. We get sent to them only because the pancreas is a gland as there is no specialty that covers diabetes.
I wonder what percentage of patients that diabetics comprise of the typical endocrinologist’s practice?
Well, there are diabetologists, who usually display a certificate on the office wall stating that they have had two hundred bedside hours caring for diabetic patients in a hospital, so they are considered experts in diabetes. This ignores the fact that diabetes is a disease that the patient has to interact with twenty-four hours a day, every day, not in the highly artificial environment of a hospital but in the real world setting of missed buses, unexpectedly late work duties, unsupervised sleep, naps, groups deciding to cancel planned meals because they are running late, etc., so the ‘bedside experience’ diabetologists are so proud of is in fact profoundly misleading.
This is where I am going to disagree. I know finding a doctor that works with the patient as an equal is hard, especially now with the way insurance works. There is no time any longer to talk with your doctor.
But over my 47 years all the endocrinologist that I have seen have specialized in diabetes. And I get it these kind of specialist is hard to find except in big city/research centers, they are out there and mine have all been great!
Yes, an endocrinologist who must know all endocrine systems, may get less knowledge on diabetes, but the number of us out here, they will sure get a lot of hands on training if we as patients do our part in communicating with them.
All doctors are not bad! There are many, many great, caring compassionate, empathetic doctors out there.
I’m not sure, but then another question comes to mind … of that population (those with diabetes being treated by a typical endo’s practice) how many are Type 1, Type 2, LADA, Gestational, Mody, and so on …; the list is rather lengthy today.
Mine likes to tweak my settings, which really end up being a 2-5% change. Certainly within the margin of error on how our bodies work. I just change them back after I finish my appointment.
My new endo tried to tweak my settings the first time I saw her and I objected immediately and told her that I wanted to be the one to change anything as I needed to know what the settings were. The next time I went to her she did not ask for my pump at all, just looked at the reports and blood work. Kudos to her, I’m sure she probably made a note in my chart.
Kind of both, for me. I will tweak as it becomes apparent. When we meet we will review my readings and my settings and see if there are patterns showing (I found the last two, he found the one prior) that indicate timing or dosage needs some tweaking. It is basically a really good partnership. He has no problems explaining why if I question something nor adhering to my wishes if I say ‘no’. He has been really good about discussing various aspects of diabetes or diabetes research - he has said he enjoys meeting with me because so many of his patients are not involved in their treatment and it is a pleasure to work with one who is.
ive discovered doing it myself helps me learn more about basal rates, and how it can help me control my diabetes a bit better…i just message him with the updates so he knows what i did so when i go in to see him he has it on file
They set them up for me initially and cde made some changes here and there but not anymore. I just do all temp rates now as needed. I still have alot of the original settings. I am so fluctuating and never the same so temp rates work best for me. Thyroid meds prolly have boosted my basal needs at times. But over all they helped bg.
Initially my endo gave the initial settings to the Omnipod trainer. But I already had programmed settings that I liked better, so I kept mine. They never said a word about it and just downloaded the data each visit. I constantly do changes with trends I see, maybe months without changes then constant tweaking until I’m happy with my levels. I honestly can’t imagine letting a doctor decide any of my settings. If they have input I’ll listen. The new endo the last visit just asked isn’t aiming for 95 too low and I replied no, because I’m usually not actually at 95 most of the day, it’s just an aim.
PS@meee I can program different basal programs and can switch from basal 1 to basal 2 or 3 etc if I want? I have found this helpful because I’ll have trends for 2 weeks that are different sometimes and then I can switch back to the basal setting I was using before. I’m not sure if that would help you or you fluctuate day to day too much to do that.
I have to disagree. If they should not have any input, why are you going to see them?
I can’t say whether that is true or not, since I most likely have a different doctor and have not been told the same things you may have been told, but if your doctor is really that bad, I would suggest looking for someone else.
I agree with that statement, but we all still need some help to get started. It’s just like anything else. Your parents show you how to make a paper airplane or snowflake as a kid, but you did the creativity of fancy origami after that. Somebody introduced you to the tools in Industrial Arts, but you’re the one who learned how to be a contractor. If your doctor had just handed you the pump and said have fun, how long would it have been before it started helping you get good numbers? I generally change the settings myself, and my doctor generally likes them. If I am having trouble getting good numbers, we may discuss them, but just like every other user, I’m the one wearing the pump and in the control seat, so I get the final say. Your doctor is not there to try to run your life or be a dictator, they are just there to make suggestions and, if applicable, help people get started.