Category Archives: Endo

Endo Visit, part 1000 (or so).

Tuesday marked another quarterly visit with my super endocrinologist. Despite the fact that this was the thousandth (or so) visit with her, we still had plenty to talk about.

After going over my A1c result (still excellent, but a little low), the biggest topic of conversation was analysis of my CGM data. This is the first appointment that included a measurable amount of CGM data to look at, and that made this appointment different than most.

She’s concerned more about overnight lows than the lows I’ve had just before dinner. So we dialed back the basal on my insulin pump between midnight and 8:00 a.m. We’ll see if that does the trick.

If I really want to be honest with myself, the truth is that I’ve been a little aggressive correcting post-meal high blood sugars. So I’m getting to 80 to 100 mg/dL before bed, and going to sleep for six or seven hours while my BGs get lower and lower.

I was also honest about all that with my endocrinologist. At some point in my life, I decided that I needed to get over my feelings of what someone might say about me when I let my guard down and admitted where I might have come up short.

Now, this is where you might say, “great, everything’s perfect”. But you know what? What I really needed was to work with a doctor who would listen to what I was saying and work on a strategy to solve those shortcomings, without interjecting guilt into the conversation.

I mean, it’s one thing to let my guard down and speak the truth. But it doesn’t mean much if it doesn’t result in a plan of action put together in conjunction with my medical team.

It’s easy to take that for granted after several years with the same endo. What we really have to remember is to find a healthcare professional (or team of professionals) who will help us find the success we seek with our diabetes. When we do find that healthcare professional (or team of professionals), we have to remain grateful and let the process of working on a better life with diabetes take its course, wherever it might lead.

Both of those things can be difficult, but they are both worth the effort it takes to get there.

Other than that, I got a couple of prescriptions for things that are new (like Accu-Chek Guide strips) and things that need to be replaced (like expired backup insulin pens). We talked about the #BeyondA1c workshop a couple of weeks ago, and the upcoming Friends for Life Falls Church, Diabetes UnConference, and Diabetes Sisters Weekend for Women gatherings.

We only get so much time with our endos and diabetes educators. Precious time. If you can, it’s worth it to spend the time pursuing the best results possible, together.

I admit it… I’ve got a great endocrinologist.

I like my endocrinologist. There, I said it.

Endos are sometimes a source of dread, or frustration, and some people wind up having to explain a lot about newer technology or drug developments to theirs because, let’s face it, diabetes changes sometimes move faster than their doctor.

But I don’t experience any of that. My last appointment a couple of weeks ago included the typical A1c, and a little blood work. Cholesterol, kidney function, that kind of thing. Vital signs, download of the pump data. Everything checked out okay, though I’m carrying around slightly more calcium than I should be. Who knew you could have too much?

We spent the rest of the time talking about a clinical trial I’m considering, about insulin pricing, and about a recent NBC Nightly News story on a family that peruses Facebook groups to find insulin their child needs, trading insulin their family’s insurance covers but their child is allergic to (“I wish some of my patients would ask about freebies… I have lots of samples!”).

Yes, she told me that she wished more of her patients would ask about insulin samples, if that’s what we’re even calling them now. Funny, I didn’t think to ask why she doesn’t suggest freebies for her patients. I’ll put that on the list to ask her next time.

We talked about starting on my Dexcom, since I was only about two weeks in when I saw her the last time. I told her, honestly, that wearing it on my arm has made it seem far less intrusive than if it were in my midsection. Which, by the way, is part of my trepidation of doing this clinical trial, because I’d be required to attach both the pump and the CGM around the middle of my body for the duration of the study.

I also mentioned that the CGM has given me real confidence that my basal rates are still very good, because once my trend graph lands in a good place, it tends to stay there for hours at a time. “But you’re going to let me know if you start training for something again, right? I remember that’s when you’ve had real trouble in the past”.

She knows me well.

We also talked about Dexcom Share. I don’t have an Apple phone, or a Pebble watch, and I’m not sure if the G5 is compatible with that anymore. We don’t agree on everything. But I trust her judgement enough that when she suggests something, even if I have questions, there’s a pretty good chance I’m going to do it and do it with gusto, because I trust her judgement that much.

Working with a medical team you can trust means a lot. The give and take between patient and doctor is a relationship that requires a fair amount of nurturing. And it’s changed over the two and a half decades I’ve been living with Type 1 diabetes.

But when it works out, the end result is terrific. It happens when both sides of the conversation engage freely and openly. It’s really great being with People With Diabetes, because they just get it. I consider myself quite lucky because I have an endo who gets it too. If you can’t talk about diabetes with another PWD, or your endocrinologist, who can you talk about it with?

I feel like I’m healthier, and making better, more well informed decisions than I’ve made under any other medical care team, endocrinologist or not. Finding people who help you with your diabetes and your diabetes knowledge are worth the effort. YOU are worth the effort. And I support you… no conditions.

Still wondering.

So… I’m somewhere around three weeks until the next appointment with my endocrinologist.

My last several A1cs have been excellent for someone living with Type 1 Diabetes.

But how have I gotten there? I wonder.

Did I get there with perfect blood sugar numbers all the time?

Did I get there with lots of lows?

If I had a lot of lows, did I do more damage to my overall health than that A1c number is worth? For the record, my basal insulin delivered versus my bolus insulin delivered always turns out to be pretty much what they are supposed to be, I’m told.

But still… What if I’m using too much insulin to knock down potential highs, leaving me with extra insulin that’s just going to get stored around my midsection? Honestly, I’m really worried about that.

What if those lows are killing off brain cells, causing other issues that I haven’t imagined up until now?

What if my A1c looks good, but my highs and lows go up and down through the day like an EKG, instead of like a normal person’s pancreas works?

I mean, look… On paper, I’ve been the model student for some time.

I’m still wondering if the truth is something different altogether.
 
 
 

Endo woes.

This story is not all bad. Like all visits with my endocrinologist, I learned something and had a good discussion. But it wasn’t everything I’ve come to expect from these quarterly get-togethers.

My day began as usual: Get up, get showered, get dressed for work, get breakfast. After breakfast, I headed over to my endocrinologist’s office for my quarterly visit.

I get there, get checked in, and about five minutes later, a lab technician takes me back to get my blood drawn for my A1c. Then I’m sent back to the waiting room until I’m called by my endo. Then… about 3 or 4 minutes after I sit down in the waiting room again, the technician comes out with candy in her hand.

“Here… you need this… you’re 51.” Cue the embarrassing feeling of being stared at by aaaalll the people in the waiting room. Both of them (it was early). Not that I know this was really happening. It just felt that way.

What? I had eaten breakfast about half an hour earlier! And that’s when I began to learn that you can be just as embarrassed about low numbers as you can about high numbers.

Sure enough, when my doctor came out to get me, she said, “Well, not only are you 51, your A1c is [I’m omitting this part, but trust me… it’s significantly lower than the last one]”.

“Are you having lots of lows?” she asked. And I answered, “Well, you know, not too many, blah, blah, blah”. In other words, I lied. Sorry Dr. Pao, if you’re reading this. But you probably already know anyway.

In fact, I have been having (at least) a couple of lows every week. Usually in the 40s and 50s. I’d really gotten my focus to extreme control. In other words, I hated to see even a 120 mg/dL on my meter. A number like that would drive me crazy. So I’d work hard on getting that down to under 100. I worked hard on getting all of my numbers under 100. Of course, that kind of control puts you much closer to the hypoglycemic part of the blood glucose spectrum. Add in additional workouts to get ready for my bike ride and (hopefully) a triathlon, and now I’ve got even more to worry about. I have to write this out, so I can admit it and get it off my chest: I’m too low all the time.

She mentioned something else that’s stuck with me since then. I told her how I’m tired all the time, like really tired, even while working out, which I’m not used to, and which scares me a bit. And she said basically, yeah, when your glucose is low all the time, you’re tired all the time, and your muscles are sucking up all that sugar right away, even if you’re taking on extra for your workout (mentally, she’s probably thinking “Duh!”). So it’s okay for me to have 115 or 120 or 130 on my meter on a regular basis as opposed to 75 or 65 or 55 on a regular basis. Maybe (and I’m extrapolating here), running higher than I have been will help rejuvenate me a bit. Maybe I haven’t realized just how energy-sapping all those lows have been, cumulatively, over the past three months.

So I’m going to have to change my internal messaging to allow myself to think it’s okay if my meter reads in triple digits. Now, I realize how some People With Diabetes who are reading this must think I’m the luckiest guy in the world, and they probably wish they had my stupid problem, and I get that. But getting the numbers in a good range is tough, regardless of which side of the range you start from. This is my problem. It’s not common among PWDs, but it’s a problem and I have to fix it.

We’ve determined that my basal rates were too high, and I’ve ratcheted down every one of them at least a tenth of a unit. Already, I feel like I have a little more energy, though the real verdict on that will come over the next few weeks. On the bright side (additional testing), my kidneys are still functioning well, and my thyroid appears to be humming along nicely too.

In the final analysis, this visit with my endocrinologist is the first one I can remember with this doctor where I didn’t walk away feeling great. My fault? In this case, yes. I feel like I let my doctor down. I also resent feeling that way. But why? I think it’s because—and I think many PWDs feel this way about their HCPs—sometimes incorrectly, sometimes not—having to please one more person just bothers us more than we care to admit out loud. We just don’t want to take on the burden of pleasing one more person. Or in some cases, even one person. We’ve got enough to deal with already.

In my very personal case, I also need to remember that my endocrinologist has helped me a lot. She’s done a lot for me. So given that history, it’s really in my best interests to be open to her advice. But even if that weren’t true, I still have to concentrate on me. Making my numbers work for me. Making my numbers work for me means I’ll be in a place that ultimately makes me happier, and without thinking about it, will make my endo happier too. So as always, yesterday doesn’t count anymore. It’s only information I can use to make today and tomorrow better. I’ll let you know how successful my efforts are in three months.
 
 
 

The future is not yet written.

Sooooo, how did that visit with my endocrinologist go last Thursday?

For the first time in a long time, I was seriously worried about a visit with my endo. Simply put, I have not been a good citizen. As far as I could tell, my BGs were running higher than usual in the past three months. On top of that, my eating habits weren’t so fantastic either. I was sure that the results of my tests were going to be awful, and I was going to have to make some serious changes to get back to where I’ve been for the last five years.

I was very concerned about letting down my endocrinologist, who’s been instrumental in helping me focus on the right things, helping me keep my numbers in a good place on a consistent basis.

So… So… How did it go?

Surprisingly well.

My A1c stayed exactly where it was last time. I did manage to gain two pounds over the holidays, but I thought the scale was going to show I had gained much more. I’ve got some work to do, but overall, it could have been much worse.

I’ve spent a lot of time thinking about it over the weekend, and I think there may have been one thing that helped me.

I did a lot of glucose checks every day. Probably more than ever before. Even when I knew the number might not be good, I tested anyway, so I could make corrections if necessary. And there were days when I made a lot of corrections. That may have made the difference. Diligence works.

Going forward, I have two things to remember. I need to work out more often, without a doubt. And I need to eat better. Which, thankfully, I’m already doing.

Hey… Listen, it’s true that this diabetes thing is really a marathon, and not a sprint. That said, I’m glad that last week’s visit turned out well, and I’m happier still that I have a chance to be even better going forward. The future is not yet written. And I’m encouraged by that.
 
 
 

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