Who calls the shots, you or your doctor?

Treatment Insulin
1

As a diabetic that uses an insulin pump, I have a long list of insulin-dosing decisions to make. I need to set an insulin to carb ratio (I:C), an insulin sensitivity factor (ISF), a duration of insulin action (DIA) and a blood glucose (BG) target for correction purposes. I need to decide when to correct a high BG and how much weight I give to insulin-on-board (IOB). I also need to consider what my pre-bolus time is for each meal I eat.

Some people, especially the newly diagnosed, like to maintain close contact with their doctor, nurse practitioner, or perhaps their diabetes educator when making and changing these pump settings.

I’ve been at this a long time and choose to make all these decisions myself. If I called my doctors office for this guidance, I’m uncertain what their response would be. I know that many here operate like me but I’ve also read about others that are more comfortable consulting their doctor about these settings.

What degree of consultation do you have with your medical professional about this issue? Does your doctor expect you to make all the decisions? Does your doctor examine your settings at your follow-up visit and give advice about changes? Does your doctor actually make changes to settings himself/herself? If so, do they seek your permission or concurrence or is this a hostile pump take over?

Who calls the shots, you or your doctor? Or is it more collaborative and collegial?

2

I have been using insulin for a long time, self manage my Diabetes and insulin regiment. When I first started there was no carb counting or even a sliding scale we used food exchanges and mostly gave ourselves fixed doses of insulin. We did not even need a Rx for our insulin and many Druggist in this country would offer some advice if needed.

Today it’s very diffrent for someone starting their Diabetes life and many individuals start using a pump
long before they understand and figure out there personal relationship with the new insulin’s of today.
I do not even agree with starting a person with only a few months of insulin experience on a pump but it happens all the time now…JMHO

3

I have been diabetic for 50 years (since age 12) and on the OmniPod pump for about 6 years. I see my doctor every three months except when I am in Florida for the winter. We have a collaborative arrangement. She helped me set up the PDM when I first started using it, and I take her suggestions when we meet for regular visits; however, I know enough about my treatment and my body that I can change the I:C ratio or basal rates as needed. If I have questions, she is an e-mail away. Anyone who is on a pump should learn as much as he/she can to be able to self-manage (especially in times of emergencies), but I have learned that my endocrinologist did not spend all of that time in school and in practice for no good reason. Sometimes she makes suggestions that I would not have tried, and I get much better control following her lead. For us, collaboration is the key.

4

After pretty much skating by for 37 years thinking basal is just something that grows in the garden and an average A1C of 7.5 I finally got engaged in managing my D. Initially I got a Dexcom for which my primary care doctor filled out the paperwork. After 6 months of watching a roller coaster ride day in and day out I had my endo fill out the rx for my omnipod pump. The Omnipod rep/CDE helped me set up the PDM in consultation with the CDE at the clinic. Since that time 2 years ago I have been solely responsible for the settings on my pump. I call the “shots”, set my basal rates, DIA, everything is up to me. I meet my CDE every once in a while and she has access to the Diasend report which includes my pump settings and dexcom readings. My endo has no idea what my settings are and wouldn’t dream of changing them anyway. So long as I am not having frequent hypos and my A1C remains between 5 and 6 she assumes correctly that I know what I am doing and leaves me to it. If I need something or have a question she is just an email away.

5

John - I think that knowing how to dose insulin well using multiple daily injections provides a solid base for adapting to a pump. Using a pump and using one well are two different things. I used a pump for many years without fully exploiting its potential. During the last several years I finally made good use of all its features, including extended boluses, temporary basal rates, and a basal profile that keeps me level even if I skip a meal.

6

SherryAnn - It’s great that you’ve developed a good working relationship with your doctor. Your knowing how and why to make pump-setting changes independently is important. It’s also great that you remain open to learning new things from your doctor and that your doctor has some effective techniques to share. I think it’s best to remain open to learning.

7

Clare - You raise an important point. Once the person with diabetes takes on full responsibility for their diabetes, then good and even great control is possible. I also drifted with my diabetes control for many years until I finally took control. That’s a key ingredient that’s impossible for anyone to manufacture until the diabetic takes the reins. This is probably something that frustrates doctors.

Like you, my endo leaves all my pump settings up to me. Demonstrating good control via my CGM and fingerstick numbers with few hypos has won her over.

Email access to the doctor is a nice touch!

8

Ultimately we all call the shots as the Doc is not going to resort to physical violence to get us to conform :smile: Like yourself I’m not new to this rodeo and will try different things and see what the outcome is good or bad. Endo and I talk about them every 3 months and usually end up in same place as he will offer suggestions that I sometimes did not think of trying. Been on insulin since '79 and pump since '03 so not a newb. Doctor every 3 months keeps my head in the game as I may tend to get lax if much more time between appointments.

9

Food exchanges–hoo boy that takes me back. I never did really figure that out. Don’t think I tried very hard either. God I hated being on R/NPH. Took me far far FAR too long to finally get with a doctor who was willing to let me see a specialist and finally got myself onto MDI (and now a pump). I did try to bring it up with earlier ones but I guess I just wasn’t assertive enough. I was also at the mercy of university health insurance & clinics for a long time, which were much more limited in terms of covering referrals to specialists, and having the right mindset for treating a long-term chronic disease like T1.

10

I never understood food exchanges either so I didn’t use them. I didn’t even count carbs until 1996 when I got a pump. Mind you, I started insulin in 1978. :slight_smile:

11

I have had three endos, all female, and all very different. The first was very experienced, and she wrote the permission letter for me to use a pump. She had me go through pump training with her CDE, and she dictated the settings on my pump. All the settings were wrong, and I was in the 300s for more than a day. I did all the changes needed by myself. She was not very experienced with well controlled T1D’s, and did not know how to work with someone with 60+ years of T1. She moved to another part of the state after being my endo for two years.

The second endo was young, and had very little experience, It was easy to tell that she was learning from me about T1. I made her somewhat nervous, but she always agreed with me on every request I made. She wrote the prescriptions, and let me try anything new that I wanted. That was an ideal situation, but she moved to another part of the state after four years with me.

The third endo is experienced, and keeps up with everything new with T1D. She questions my requests, and makes good suggestions. She tried hard to get Medicare to cover a CGM for me, but that failed. I admire her for her efforts. We get along well, so I doubt that she will be moving soon. :smile:

By the way, my first endo came back to her original location after I started seeing my present endo. I guess she realized that she would not have to see me anymore. :wink:

Conclusion: If you want to keep your endos, don’t make them nervous with your knowledge, smile and be very friendly, and be grateful for the scripts they are writing. After 69 years of T1, I guess I might know too much!! :fearful:

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12

I do it on my own. My PCP prescribes all my meds, including insulin. I go to the endo once a year, so she will continue to fill my scrips for pump and CGM. PCP doesn’t really care about the D, as he is pretty ignorant about it. Endo wants me to maintain an A1C over 7. I refuse, so we don’t agree. When I have gone to her in desperation, it is always a fight. Frankly, I am afraid if I go too often, she will refuse me as a patient, and not fill my scrips.

Like Terry, I know myself, my struggles and problems, how insulin affects me…No doctor can understand that.

13

Wow. I know the attitude has changed from Lower Is Always Better to the recent concern that too many hypos cause their own problems, but I didn’t think the needle had moved that far in the other direction. I remember being taken quite aback when I tested with a 6.1 and instead of high-fiving me my endo admonished me that it was too low–“I think you’re getting too many hypos!”–and urged me to loosen up a bit. I used to think of my hypos as signs of virtue, just part of the cost of maintaining tight control, which I guess was instilled in me from back when the tools for doing so were a lot cruder. I vastly prefer the new paradigm, but I’d be looking pretty askance at my endo, too, if she hit me with that one. Her target is 6.5, and I’m ok with that.

14

I make my own adjustments as needed but am always glad for someone else’s input. Sometimes you get to close to it and don’t see everything you should. So team work it is.
But I do find it amazing that we are allowed to make drug dosing decisions that have life and death possiblilites every day. I mean how many prescriptions drugs are labeled 20-40 units per day? This is probably why us young children w/ diabetes mature so quickly. We are making those life decisions everyday.

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15

You think that’s bad, one endo wanted my wife’s A1c well above 5. She is a 1.5 so her A1c’s tend to be excellent and her insulin amounts are miniscule. We both got aggravated with him for admonishing her when she almost never gets hypos. I personally don’t agree with a doc wanting your A1c to be higher than what you want it to be if it means you aren’t ending up unconscious, getting injected with glucagon, or going to the ER in a comatose state.

16

I just got my pump a couple weeks ago. During the training sessions with the Dietitian/CDE, it was clear she expected me to run every single change by her and the endo. She had put in the initial numbers based upon the standard formulas and “rules.” My TDD and the “500 Rule” told her my I:C should be 1:45. Hahahahahaha! My current I:C is 1:8 in the morning and 1:14 in the afternoon. She agreed we would lower it initially to 1:20 and I inwardly told myself I would try her way of checking in about everything. Within a few days of my checking in with her, she understood that I’m capable of making all the decisions on my own. She told me I was a “dream patient.” I’m just happy I’m still allowed to be a self-sufficient patient.

17

Here is my take. I was just in a class with a young lady who had been diagnosed as T1 at 8 months. Now over 20 and training as a nurse. She had a bad bottle of insulin (did not know that) and was running BGs over 400. She was in the ER, IV fluids were being administered and the doctor came in and told her she was going to inject 10 units if regular through the IV tube and 10 units intra muscular. The young woman wisely refused.

My correction factor on Novolog is 1:65. 10 u in the IV would lower my BG by 650 points shortly. The additional 10 intramuscular would low it another 650 over a few hours. Hmm…400-650-650 = ANOTHER GO ROUND IN ER!

Most hospitals see few T1s–mostly T2s on pills. The experience for T1s in ERs is lacking.

I carry pump directions in my wallet. I refuse and have my husband refuse to remove the pump. I feel my survival is based in great part on my ability to understand and control my BG. Hospitals are NOT equipped for it.

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18

Terry, good topic. Thanks for posting.

I get regular survey requests from our friends @ DiaTribe. One of the questions they ask is similar to yours, but in multiple choice format. I always answer that I am the one who makes the final decisions on treatment options, but that I accept input from my endo.

Like you, I am reasonably certain that I know my diabetes far better than anyone else on the planet, however, I have a view of just MY diabetes, while my endo hopefully has a much broader view. This broader view may be helpful at times, but again, I get to make the choice.

When I was younger and not as engaged in actively managing this condition that is “normal” for everyone with diabetes, I was far more willing to accept the doctor’s view. After all, the doctor has the training and “all the knowledge”, right? So, I think who calls the shots is just mostly a logical progression from being a patient with an illness who is subject to the expertise of one or more highly schooled professionals, to someone who is engaged and paying attention to the latest developments; someone who doesn’t see themselves as “sick”, but as the leader of a “team” working on the goal of increased time in range. Call it a continuum of engaged experience. Where you fall on the continuum dictates your relationship and tomorrow you may be on a different part of it.

Now, of course, because there are doctors, prescriptions and insurance companies involved, there is a bit of a dance involved. I cannot write my own prescriptions which are truly life-giving prescriptions. Insulin after all, is the only viable method to maintain a life that is non-fatal due to diabetic complications. All the other paraphernalia associated (pumps, syringes, meters, test strips, CGMs) which allow me to refine the delivery of insulin also require prescriptions, so I had better find an endo who subscribes to my view of how our relationship should be. Fortunately, I have had this in my last two.

Wow, that was a long way of saying “collaborative and collegial” - :smiley:

19

My experience when I first started pumping 2 yrs ago was that they are deliberately very conservative when you first start out, and while this annoyed me at first I came to understand the reasoning. The thing is going to keep ticking over, delivering doses, and it’s easy for it to mount up without you noticing and put you into quite a sharp hypo if you’re not testing all the time. So it’s safer to start slow, let your BG’s run high, and bring them down incrementally. I found it frustrating but I did understand the logic.

20

I think that sounds exactly right. Should be a partnership.