Visiting the endocrinologist - my PDM

Type 1 and LADA
#1

Hello and Happy New Year to everyone!

I really like my new endocrinologist so that isn’t an issue. I use the Omnipod and feel like my PDM is mine. I am uncomfortable handing it over to the doctor during each visit. Between the labs and printed reports shared with the doctor, I want my PDM to be my thing. When I was strictly on MDIs, there was no way of sharing my dosage history and I stopped logging years ago. Even when using diabetic apps the doctor rarely looked at my daily insulin intake. I sometimes feel like a child being observed when I hand over my PDM. I have been living with Type 1 since the age of 7 for 30+ years so it’s not like I’m uneducated about my management. Does anyone else feel the same way? Is the doctor required to look at the PDM? I’m going to discuss this with my endo during my next visit but I wanted to hear from the community. Thanks!

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#2

I don’t hand it over either. Never. There is nothing on there they need to see. It’s somewhat arrogant that they think they can look at my pump data for 5 minutes and see something they can advise me about.

At my last appointment they asked for it, and I told them I don’t do pump downloads.

Most insurance companies and suppliers don’t require the pump data for you to get your pump supplies. Call your supplier, like Byram or Edgepark or Insulet or the pharmacy or whoever sends you your supplies. And also call your insurance company. Find out what is required for you to get supplies.

Mine says I need an A1C and endo visit notes from the visit only once-per-year. That is all. No other data is required for me to get my supplies.

So I do not hand over my pump. And I tell them that.

If your endo is not going to write your prescriptions because you don’t hand it to them, then you might want to find a new one.

I am with you on it, I feel the same way.

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#3

I got irritated at handing my endo’s assistant my meter(s) and pump at each 90-day visit. Then I did what my wife has been doing for quite some time, which is to hand him 3 reports that are printed at home: reports from Carelink, Clarity, and Glucofacts. Problem solved.

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#4

It is not required for me, although I have allowed it so they have my basal rates on file. This may be relevant if hospitalized, and may be consulted regarding my insulin management. (That’s a whole different issue!).

However when I noticed additional insurance billings for that “service”, ( download) so now I provide copy of settings once a year.

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#5

I have a divided mind on this, but I certainly agree that handing over your diabetes data should be voluntary. The thing that’s irritated me more about this transaction is that I see very little competence on the part of the doctors in actually gaining insight and offering a useful suggestion.

To be fair, the doctors seek to comply with the standards of care and retrieving diabetes data and providing analysis is part of that.

I dutifully hand over my pump, meter, and Dexcom every 90 days for download. I’ve told my doctor, however, that I neither seek nor need any insulin dosing advice. My blood glucose performance backs up my position.

I think that most doctors do not understand insulin dosing and management well. They don’t live with diabetes like we do. They don’t enjoy the treatment insight and understanding that comes with long-term exposure to the consequences of hundreds and thousands of every-day decisions we make.

And sometimes we make a bad decision and it’s irritating for a practitioner to point to a CGM trace a few weeks back and ask, “What happened here?” That’s not helpful. We make lots of good solid decisions that don’t show up in the data except for the absence of hypos or hypers.

By handing over your PDM, you may be enabling the doctor to take the next step, which is making changes to your pump settings. That is definitely crossing over the line!

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#6

I found out that I do not have to hand over the pdm at all. i’ll definitely discuss this with my endo who isn’t the most difficult person to deal with. Thanks for sharing!

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#7

Since insurance is paying for pumps, etc, I understand the need for supporting documentation that one is USING said devices.

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#8

Yes, I do just that! So glad to hear that I am not the only one. Thanks!

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#9

I understand so I also explained to members of my family how they can print the data should I need it if hospitalized. Great point! Thanks!

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#10

@Terry4 (I just figured out how to tag).

Oh I agree! The first time I visited the endo after starting on the Omnipod, I saw the fingers changing things and I was shocked. There seems be a serious dissonance between the doctors and the emotional trials of the patient living with T1D.

My new endo is decent and yet I still have this issue with the pdm. I have to add that I have no problem handing over the pdm during challenging times in my management. The endo has acknowledged my commitment to managing my diabetes. When I do need more help, I hand over the pdm. I just don’t want that to be obligatory, during each visit.

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#11

The last endo I had, I was blessed because she was a type 1 too and actually knew what the numbers meant. She only looked for patterns and give suggestions sometimes and never tried to change anything. She would say I was doing well and my A1C was 6.4, she acknowledge I had the morning spike and I was adjusting for it and the drop at night that maybe I needed an dexcom with an alarm instead of the Libre in case I ever dropped too much.

New endo, she’s really nice, but I had quite a few drops because of an injury as I had stopped eating much, and ended up losing 10 pounds. I was constantly changing settings downward to figure out what was the new right levels. By the visit I had stopped most of the drops.

I brought her copies of everything because I was pretty certain she might not be able to download the data and handed over my PDM and CGM when requested for her to look at.
After looking at it a few minutes she thought I should lower my insulin to carb ratio in the early afternoon ( I have about 6 different IC ratios on it) and started to change it! Nooooo! I immediately spoke up and said please let me do any changes I want to know what’s been done or being done on as it controls my life!

She immediately handed it back to me and said she understood. But I was taken aback that she would even try??? That they think that you don’t change things constantly sometimes and they just look at it for a few minutes and think they know??? I’ve heard of endos changing all sorts of data on people and I remember being surprised about that.

That if I go to the dentist I have to adjust insulin for it, that if I walk around the block I have to adjust insulin for it, that if I have a pattern of lows I am adjusting for it. That my Libre sensor is sometimes off by 20-30 points so when it says 65 I’m not really or I would adjust for it!!!

There must be people out there that don’t adjust when needed??? I guess? Because they got the habit to change it for people from somewhere. But I’m hoping at the second visit she’s made a note and doesn’t even try!

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#12

I have been a type 1 since I was 8 and will be 68 at the end of the month. I have never seen a specialist for diabetic care except once when my GP insisted my A1c was too low at 4.9. I have never had to go to the hospital because of my diabetes since I was diagnosed. I went to the endo she insisted I see and when I checked in at his office they asked for my meter. I was shocked and not at all happy. I had had diabetes for over 50 yrs by then, and was highly insulted. I did hand it over and the endo told my GP that I was doing extremely well. My GP didn’t agree with the endo, because she wanted my A1c at 6.5. I soon found another GP who would respect my knowledge about my own disease. This still angers me.

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#13

I think to a large extent, we tell the world how we want to be treated. The world doesn’t always listen but I think it’s our responsibility to communicate clearly and affirmatively with our medical providers.

We all have the opportunity to become experts at how we use and dose our medications. Doctors can talk a good game about having a “team relationship” with the patient but I definitely don’t get the sense that they see us on equal footing in the relationship. Now I know there are exceptions to these values for some physicians, but by and large, a lot of doctors assume the superior role in the dynamic.

So I think it’s a great idea to speak up to defend your space as an engaged patient. The doctor can’t read your mind – just be clear, timely, and deliberate.

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#14

I have no problems with my Endo seeing my diabetes data. He goes over them with me and might make a few suggestion to pump settings. I have been diabetic for 52 years. A good Endo is a great help.

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#15

I feel the same way. I hate giving my pump and Dexcom data. I no longer upload my Dexcom so that data is safe for my eyes only, but I’m always asked for it.

#16

I want to add that I would gladly hand over info, if I needed help controlling my glucose levels etc.

#17

I would like to say my last endo was a PHD, teaching professor, and diabetes reached at a diabetes institute and also a t1 pump user who say only a few select patients. He had me send him weekly reports looking for trends and was really helpful. But he moved to California.
My new endo. In addition to his practice owns a private research center with4 different trials going on. My first appt. With him and the FNP-CDE (who specialises in problem patients and is a pump whereing t1) lasted 4 hours. They also want weekly reports which i have no problem with. Ive been at it 20+ years but have never been perfect.

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#18

:slight_smile: Are any of us?

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#19

And we all need help sometimes

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#20

@Marie20 I’m amazed at how easily your personal experience and intelligence is somehow dismissed as a T1D. Each patient is different but there has to be some basic doctor-patient protocol here. Asking for permission would seem good practice in my opinion. Many doctors follow the rules, by the book but patients are individuals. Grabbing something so personal and making changes seems absurd but I also respect the doctor’s position. I just want that respect reciprocated. Hang in there! Thanks for sharing!

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