I’ve mostly run my own operation. The endo who set up my pump did a great job and I’m still pretty close to the original settings but am constantly fine tuning things. I hardly ever call them for supplies or advice but just do it myself. I have a new doc after a kerfluffle and she seemed pretty sharp. But mostly said “you’re doing really well, why change?”" As my A1C rang in at 5.1. I was pleased she didn’t gripe about it being too low…
That’s for sure. When I had major abdominal surgery 5 years ago and had to be in the hospital for 4 days, they were going to treat me with R/NPH. You aren’t allowed to administer your own meds, so I had to kick up a major fuss. I was on MDI at the time and when it comes to R/NPH, believe me, I’ve paid my dues. No way I was going to let them put that sh*t in my body. This was a hospital affiliated with Joslin, mind you. I was eventually able to work out a compromise to let me do the MDI regime, where I selected the doses but they administered the shots. Crazy.
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JC14 - I also use my three-month doctor appointments as a way to stay focused on my control. About six weeks out I start to pay more attention to my time in range and time low numbers. I rarely get any suggestions from my doc that helps with my BGs. I don’t expect that either.
DrBB - I’m sure glad my R/NPH days are over, too. I have thought about using R, however, if I ever go back on MDI. I would experiment using it to cover mealtime protein in addition to using a long acting and a rapid acting analog.
phoenixbound - Thanks for the comment!
Richard - I have to be careful not to make my doctor nervous with my knowledge. She’s pretty confident but I know I scared off the dietitian/CDE when I dismissed eating as many carbs as she was taught to recommend. I remember asking her when she questioned my low carb way of eating, “How do you think I got a sub-6% A1c with no severe hypos??!” The doctor smoothed feathers for me.
Sue - I would struggle to remain civil with a doctor that recommended keeping my A1c north of 7%. I’ve been there. It feels sticky, greasy, muddled-brain and I spent most of my life shooting up corrections and putting the brakes death-wish nose dives. Good for you for taking the matter into your own hands!
Sally - It is amazing that we makes dosing decisions every day with a lethal drug! I think every doc should hold us in very high regard. A team approach can work very well with the right personalities. The big drawback to that, however, is that you sometimes need to consult your team way more often than they have the time or patience for.
Shadow - Since you are new to all this, it does make sense that your medical people want to be conservative. They can help protect you while you learn the ropes. Welcome to the club. Sorry you had to join but glad you’re here to help make some sense of all this!
Sue - Hospitals can be dangerous places for those of us that use insulin. I didn’t always realize this truth. But my participation here and a few personal experiences have taught me this. Sad, but true.
YogaO - Glad you like the topic. I’ll get along with the medical system as long as they treat me with respect. As far as the team concept goes, I like it as long as I make the final decision. My skin in the game grants me that authority. I’m not so headstrong as to ignore a doctor’s advice out of hand. I know they know some things I don’t. But when it comes to dosing insulin, no one knows me like me.
acidrock - Glad that your doc did not admonish you about lows with your low A1c. You wear a CGM; it’s not like you’re hiding your data. If your doc thinks you have too many lows, he can just point to the evidence. My doctor still wants to warn me about lows but I think its mostly out of habit. She doesn’t see too many patients like me. I think her attitude is reflexive. She happily writes my scripts and was willing to try Afrezza.
Me.
I haven’t seen my GP for more than 6 months now. I would like to see him, but last time I tried to set an appointment (I usually text him and ask for a time) he didn’t reply even to 3 texts. So maybe he has decided, without discussion, to drop me.
Haven’t seen my ex-endo for more than 3 years.
I guess I don’t really have any doctor any more. I am pretty much on my own now.
I have been lucky with my Endos. Saw a new one yesterday after the best one ever retired. I manage my db but want and appreciate the Endo’s perspective. One example: yesterday, the new guy worked with me on a nighttime bg problem and gave me his recommendations, based on my history which he had actually read, and said “Here is what I think you should do but YOU (emphasis his) are in charge. Make the basal changes at the pace you think is best for you.” Then, he says, after we see how the basal changes work, we can look at whether Afrezza is worth a trial. I had asked about it re postprandial highs. He expressed some concerns about a few heart history things re the Afrezza. Everything he said he backed it up via my history and via research findings.
I like the partnership approach.
JustLookin, do you want to continue going it alone? Perhaps finding an endo would be worthwhile? Even if you do prefer your own management, it can’t hurt to get another opinion occasionally, can it? (I wanted to put a smiley here but they are kind of weird looking! so just consider this a friendly post, not trying to tell you what to do.)
Thanks @Terry4. I’ve been a member of the club for four years, just new to pumping. I totally get the conservative approach, but a 1:45 I:C when I’ve been at between 1:8 and 1:14 for well over a year seemed a bit much. I think it’s hard for the medical folks to fully grasp that none of the rules really seem to apply when dealing with LADA, but like I said, she trusts my judgment now.
Yes, @DrBB, I understand the conservative approach. I know those of us that hang out here at TuD are not necessarily typical of the general population with the D. I’ve had T1 for four years and the CDE was surprised that I was talking about basal and bolus insulin in a manner that demonstrated I knew the difference. It makes me realize the medical folks deal with a huge range of people on a daily basis and I can’t expect them to automatically trust my judgment.
Wow! A CDE that has a patient who has had diabetes for 4 years and she can’t understand how you could know about basal and bolus insulin? She sounds unqualified to be a CDE if you ask me. In this day and age, basal and bolus insulins have been around for at LEAST how many years? We had the idea of basal and bolus for more years than I can remember.
I think it’s more a reflection of the people she deals with on a daily basis. It’s not her fault that she apparently comes across a number of diabetic folk who don’t take the time to fully understand their treatment.
Shadow, that is a good point. I was in a class a few years ago and afterwords, I asked the CDE about the approach one of the attendees was taking. She told me that I was very unusual. Most of the pumpers, she said, just don’t do anything on their own and don’t know all the features because they don’t explore the pump. They are afraid of it. So the CDE’s can get rather “prescriptive” unless you let them learn that you are different.
I can see non-pumpers not making the connection between rapid/long acting and bolus/basal terminology.
I trust Caleb’s endo. Caleb sees him about three times a year (he’s also his primary care doctor, so more often if needed for non-D stuff) and it’s more of a “is everything okay, do you have any questions?” situation. I like the perspective he offers regarding where Caleb should be in his self-care responsibility. I also like the way he looks at Caleb’s dosing, because it’s different than what I do. He does calculations based upon TDD, basal and bolus insulin and his weight and some other stuff and gives more general advice and verification and suggestions.
But the day to day and specifics, Caleb and I manage on our own. I am comfortable talking to Caleb’s doctor about them, as well as seeking advice, but I think we all mutually understand that we are in a better position to make the detailed decisions on a regular basis, and any changes would be ours, not dictated by Caleb’s doctor.
I dunno. I had to have a pretty intensive training in all of that in order to go on MDI, so switching to a pump was pretty straightforward (though it sure took longer than I expected to stabilize, but that’s a different subject).
How long to dial in your ISF, IC ratio, and basals? Did you get the basals fixed prior to moving on to fine tuning everything else?
I read Pumping Insulin cover to cover several times, in the weeks leading up to my pump-start. that helped a lot. The start was complicated by having had to use Velosulin.
@phoenixbound–assuming that was directed to me…
Joslin has a set of classes you have to take to qualify for MDI, and testing to determine your sensitivity and correction ratios is part of it. So I had those numbers to begin with, and was accustomed to tweaking my basal Lantus fairly often. So I had the basic understanding and some of the important tools in place. They’re also quite conservative as to basals* when you start pumping, for reasons I understand (with an automated delivery system those increments can turn into insulin stacking quite rapidly if you’re too aggressive, and before you know it–wham!). It took about six weeks before I felt like my numbers were starting to be more like what I’d come to expect on MDI. Some of the frustration there was just poor expectations management–everyone was so gung-ho about pumping that they underemphasized how long it was really going to take just to get back to square one. I also had some problems with equipment–Medtronic put out a recall notice on a batch of their infusion sets for a flaw that was causing voids and insufficient insulin deliveries, and of course the sets I’d been using for my first two months were on the list. And just all the random variables we all deal with that you eventually learn your own rules-of-thumb about because not everything fits into the neat boxes of the instruction manuals. I think it was about 6 months really before I felt like I finally had it pretty well dialed in.
*Rather silly that spell corrector on a site about diabetes won’t accept “basals” as a legitimate word. But if I see anyone else referring to “nasals” in their post I’ll know what happened.
I don’t have much of any experience, and, “worse” I’m T2 – but when I was diagnosed, I read everything I could. on the theory that knowledge is the only real tool I had. It has helped me; however, I did end up intimidating my somewhat younger endo. I have since changed endos to one with more experience and a lot more flexibility.
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It seems that you made a good move, Thas! I hope things keep working well with this endo.
JustLookin - I would probably be happy seeing a doctor once per year if I didn’t have any issues that troubled me. Unfortunately, Medicare requires an every three-month visit to qualify for pump supply payments. As far as texts go, your doctor may be afraid of complying with the privacy rules called out in HIPPA. That may have squelched his wish to respond to your texts. Ask him next time you talk about how to communicate with him in between visits.
Nell - Your doc seems to balance well being helpful while respecting your knowledge and autonomy. I hope his method is adopted by more doctors. It may be too time intensive for the typical doctor with a heavy load of patients.
Shadow - Sorry I assumed you were brand-new to diabetes. Four years is a lot of experience, over 35,000 hours worth, in fact! I agree that the approach used to adjust your basals was way too conservative. In such a situation in the past, I would listen to the doctors but then adjust as I see fit and later report the results. I don’t care if the doctor doesn’t like it. If his method does not make sense to me the I do what I do. I will try, however, to listen to the reasoning behind the doctors suggestions and factor that into my choice of action. Good luck with the pump. I think it is one of the big breakthroughs in diabetes treatments in the last 35 years.
Separately, it’s sad that more diabetics do not fully engage with their doctors and diabetes tech. Knowledge is the ultimate tool to treat diabetes. The more you know the better you do. It took me 28 years to fully engage with my treatment and the difference has been tremendous. I was always thinking that paying more attention to my diabetes took away from my life. I learned that paying more attention now becomes less and less burdensome once habit takes over and in the end paying all the attention that diabetes requires means less time with much better results. Metabolic sanity rules!
phoenixbound - I think that Dr. Bernstein is credited with using long and short acting insulin in a basal/bolus fashion. I think it was in the late 1970s that he pioneered the concept. Reading Pumping Insulin cover to cover several times was certainly time well spent.
Lorraine - Your relationship with your doctor sound comfortable. I’m always amazed at the role that parents of T1Ds play. I can easily incorporate the “how I feel” factor and you have to decipher that as a third party.
DrBB - I think a well executed MDI treatment plan is the perfect rehearsal for introducing a pump. I’ve not had that autocorrect experience with Discourse changing basals to another word. I have autocorrect turned off in my Word program. Maybe that’s where that happens.
Thas - I think if there’s one useful piece of advice about managing diabetes, it is to learn as much as possible. It’s the one thing that has served me well!
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For some goofy reason I hit the wrong REPLY button, so “yes”, I was asking you,. 
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