Living in the Orange:  When Diabetes is Tough

Diabetes is hard these days. I am usually a good problem solver and lately my usual fixes aren’t working. I am seeing patterns that differ from my normal ones. I am not sick. I am not on new medications. I am long past menopause and don’t think I’m dealing with raging or sagging hormones. Other things are sagging but that is a different story for a different day and a different audience.

I’m seeing large spikes after appropriately-bolused moderate-carb meals. My post-breakfast walks are not ameliorating morning blood glucose rises. I am giving ineffectual correction boluses all day long. My numbers climb on 6- to 10-mile hikes. The new pump profile “More” and its bucketfuls of insulin has not made a noticeable improvement.

I haven’t gained weight in recent months, but I do weigh almost 10 pounds more than 4 years ago. My doctors like that but my clothes don’t. My daily average steps are less than in previous years but arthritis and a recent bout with plantar fasciitis have dictated that I pay attention to sore joints. Abby the Black Lab will be 12 years old on Thursday and our walks are shorter than last year. And the year before. Some days we walk and I drop her off at home so I can go farther.

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

Despite being a huge fan of my Dexcom G5, I go crazy with alarms claiming my BG is 48 and it is 98. With alarms that scream 189 when my meter says 140. With alerts that declare 240 and it is…240. And alarms that alert for BG’s of 52 and although I feel fine, my meter says 52. I accept, but hate the Medicare requirement that I use only my Dexcom receiver and not my iPhone, Apple Watch, and Tandem pump.

My pump was replaced a month ago due to a failing battery. Yes, I am still not on board with a rechargeable pump and yearn for the security of carrying extra pump batteries in my meter case. The new pump has an unresponsive T-button which means that every time I turn on or off my pump screen, I have to push the button once. Twice. Sometimes four or five times. The Quick Bolus feature rarely works because I get error messages of too many button presses or it just times out when the final push to deliver insulin doesn’t work. There is a possibility that I will be getting a replacement pump but unfortunately Tandem has changed the T-button to a “two-pronged design” and a new pump might not solve the problem. Facebook tells me that I am not alone in the woes of a stubborn, mushy, unresponsive T-button. I don’t know why Tandem changed the button design but I do know that whatever problem they solved created another. The T-button is the gateway to every interaction with my pump. When the T-button is problematic, my pump experience is problematic. 4 weeks of practice with the new button design has only marginally improved my success rate.

Five years ago when I was cruising in the “Doing Okay” zone of diabetes, I wrote a blogpost titled “It’s Not as Hard.” I concluded that “I think the reason I’m feeling good these days is that my hard work seems to be having good results.” By substituting a few words, I can describe my mindset these days. “I think the reason I’m feeling bad these days is that my hard work seems to be having bad results.”

As anyone with diabetes knows, it is hard to keep making good decisions when the numbers don’t reward the work. If a 12-carb cup of applesauce spikes me to 250, I might as well have Nutter Butters or Oreos. I have definitely fallen into this pattern and thus am not an innocent victim in my diabetes distress.

I know that I need a total reset in my diabetes life and things that have worked in the past include severe Dr. Bernstein-like carb restriction, the Whole 30 diet, and the untethered regimen. To be determined….

Part 2 of the Story

I wrote the earlier section of this blogpost on Friday morning and decided that since I do not entirely trust my pump and insulin absorption that I would choose the untethered regimen option. This plan entails taking a certain percentage of basal insulin by injection in combination with pump therapy. As of Friday evening I am taking 3 units of Lantus at both 7:00pm and 7:00am with the remaining 50% of basal coming from my pump. My blogpost “Building a Foundation with Lantus” gives a good description of the untethered regimen and provides links to other blogposts and articles on the subject.

How is it working? Amazingly well and on Saturday morning, I immediately began seeing some familiar flat lines between meals. The unexpected and unjustified spikes are gone. No doubt I am being careful about food choices but that didn’t make a significant difference in recent weeks. Once again I marvel at how much easier my diabetes is when I combine injections and pump therapy. Too bad it is so much more work.

I think a stable base from two daily Lantus injections protects me from absorption issues with my pump. I am taking slightly more basal than previously and maybe that’s the only difference. I am at a stage in life that I might consider going back to MDI (Tresiba-ready?) although I’m not psyched to abandon the convenience of bolusing with a pump. Ironically Basic Medicare with a Supplement plan makes pumping a much cheaper alternative than injections.

For the moment the arrow on my dia-bete-meter has moved from “Kind of Crappy” orange to a familiar place between “Okay-ish” yellow and “As Good As It Gets” light green. This zone isn’t perfection but it is an area where hard work and good decisions usually reward me with reasonable BG numbers. That’s all I can ask for and I am doing better today than a week ago and a month ago.

One small change in insulin delivery. One big improvement in BG numbers and emotional health.

Building a Foundation with Lantus

Laddie_Head SquareMore than once I have written about using injections of Lantus in combination with an insulin pump. Although I have good results following this regimen, I tend to abandon it after a few weeks because it adds complexity and expense to my already complex and expensive diabetes life.

For those of you not familiar with the idea of using injections of a long-acting insulin along with pump therapy, this strategy is called the Untethered Regimen. It is described in a 2004 article by Dr. Steve Edelman as a plan where the user takes a pre-determined amount of basal insulin by injections of Lantus (or other long-acting insulin) and uses the pump for the rest of the daily basal requirement and for most or all of the required boluses. This approach allows a pumper to disconnect from the pump for long periods of time without worrying about erratic blood sugars and even DKA. The user still benefits from the flexibility of the pump with the ability to precisely dose for meals and corrections and to use temporary basals as needed.

In my previous experiments using the untethered regimen, I had the following pros:

  • Smoother basal action
  • Better pre-breakfast blood sugars
  • Fewer highs from changing infusion sets
  • Less risk of DKA
  • Ability to have pump-free time

Somehow the cons always won out and I went back to pumping 100% of my required insulin. The disadvantages I experienced were:

  • Hassle of shots on schedule
  • Not enough flexibility for temporary basals
  • Loss of prime on my Animas pump
  • Increased cost
  • Insulin plan more complex

So why I am rehashing this topic now? As you can probably guess, I am back using Lantus along with my pump. I have been struggling with overnight BG numbers for months, most noticeably spikes in the middle of the night followed by early morning lows. I have tried multiple changes in basal rates with little success. Similarly reducing evening snacks, changing my dinner menu, and giving up alcohol didn’t reliably fix the problem. My guess is that I have been dealing with a hormonal “dawn phenomenon,” but the pattern has not been reliable enough to make huge and somewhat scary increases to my overnight insulin.

About 10 days ago I decided to add Lantus to the mix. Rather than using two injections for 75% of my basals as I did in the past, I am giving 50% of my basal in one injection of Lantus at about 8:00PM. So far this is working great and I am not experiencing the negatives that I did in my previous Lantus trials. I’ve had night after night with few or no Dexcom alerts. I don’t need a “get-out-of-bed” bolus as I have required for several years to prevent my blood sugar from rising before I eat breakfast. My daytime BG’s have been more stable with fewer corrections required.

Untethered Regimen 2016

Why is it working so well? Magic, maybe. Actually I think that Lantus is providing a more stable foundation than the fluctuating pump rates I was previously using. I wonder if I have been experiencing pooling of insulin while asleep and that is not happening with Lantus. I have definitely been having itchy pump sites and even a few infections in recent months so maybe my insulin absorption has not been good. I suspect that whatever peak Lantus may have is matching up with my need for increased insulin in the early morning. Maybe I am just paying more attention to my diabetes and making better decisions over the things that I can control.

The fact is that although I don’t completely understand why, the untethered approach is working for me right now. When I wrote about this regimen previously, I was either using it temporarily for a beach vacation or calling it an “experiment.” I have a different feeling this time and can see it being a permanent change. Rather than feeling burdened by the scheduled Lantus injection, I feel a weird sort of freedom as BG numbers have been more consistent and less of a bother.

After having had Type 1 diabetes for almost 40 years, you’d think that I would have long ago given up on improving my diabetes care. I guess I’m just hard-headed or stupidly optimistic. Or maybe I just need to try new things to escape the boredom of a relentless day-to-day chronic illness. Whatever. The untethered regimen is working for me right now and that’s my story.

If you’re interested in learning more about the untethered regimen, check out the posts listed below.

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take time to investigate different ways of eating and alternative ways of dosing your insulin. And no matter what, keep testing your blood sugar and always carry glucose tabs:-)

 ***  Related Posts  ***

Untethered at the Beach

The Grouch is Back!

The Lantus Experiment Part 1

The Lantus Experiment Part 2

 

The Lantus Experiment Part 2

Laddie_Head SquareMy previous blogpost about my Lantus experiment ended with a hint that the story was not over when I returned to a pump-only regimen. So what happened?

A week and a half after quitting Lantus, I had one of those middle-of-the-night diabetes fiascoes that we all hate. My Dexcom CGM buzzed me at about midnight and I corrected a high that seemed odd but not unprecedented. 3 hours later Dex screamed that my BG was 381. After confirming the number with my meter, I gave a correction bolus by syringe. Exhausted and nauseous, I filled a new reservoir and inserted a new infusion set. Mind you, this was all happening at 3:00AM.Dex_Dec14

Upon priming the tubing, I saw insulin flood out of the plastic connector piece rather than drip from the metal needle. I had accidentally attached the old tubing and immediately understood my sky-high BG. I attached the correct tubing, primed, and went back to sleep. As is typical after correcting Himalayan highs, I woke up to a low of 51 at 7:00AM.

I was mad. I was frustrated. I was angry at myself and exasperated with the devil that we call Type 1 diabetes. I decided to go back to the untethered regimen. Big deal if I was stressed by cell phone alarms. It was time to suck it up and use an insulin regimen that would protect me from “not my fault” pump problems.

I reactivated the cell phone alarms for 7:30AM and 8:30PM. To correct the problems that I had with only infusing 0.1 units per hour by pump, I doubled the pump basal rate to an average of 0.2 units per hour. Using the original Lantus doses from late November, I was taking a much larger amount of basal than in recent years. Because it was holiday time with lots of food, alcohol, and stress, the higher basal worked fine. Some people believe that there is one “nirvana” basal rate. My opinion is that it just needs to be in the ballpark because every day is different and my ideal insulin dose is always a moving target.

So I was back on Lantus. Blood sugars were fine, but not spectacular. I tend to do really great at first whenever I make a major change in my insulin regimen. If I switch insulin brands, I often go low as though the new insulin is magically potent. Then after a week or two, things get back to normal. Similarly the addition of Lantus initially made my morning numbers incredibly stable, but during this second experiment I began seeing the return of a few unpredictable BG excursions.

I always wonder if my body actually reacts to changes in insulin or hardware in a physical, measurable way. Or is it all psychological and I just get better results because I pay more attention to my diabetes and make better choices on food and other controllable factors? Either way I will always be optimistic that there is something better out there and I will always keep trying new things. If nothing else, these experiments alleviate some of the daily boredom of living with diabetes.

Ten days ago I ditched Lantus again. I hated the cell phone alarms and was actually waking up in the night concerned that I would miss the morning alarm. After pumping for ten years, I had no confidence that I would remember two injections a day without reminders. In general on Lantus I had pretty good numbers except for poor food/drink decisions and a couple of “WTF” BG excursions. But in the end it wasn’t hugely different from a pump regimen.

Summary: I am back on my pump 100%. As outlined in My Lantus Experiment Part 1, there are many advantages to using Lantus or Levemir with a pump. However, at the moment I just can’t live in that world. That doesn’t mean that I won’t try it again someday. I will definitely continue to use Lantus as a pump supplement on beach and lake vacations as I have in the past. But for now the mental stress and “diabetes burden” of using Lantus are just not worth the slight improvement in my BG numbers.

*****

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take some time to investigate different diet plans and alternative ways of dosing your insulin. And no matter what, test your blood sugar often and always carry glucose tabs:-)

The Grouch is Back!

Laddie_Head SquareTwo weeks ago I wrote a grouchy blogpost about my frustrations with diabetes devices. Things got a little better for a while, but today THE GROUCH IS BACK!

I am sitting here with a high BG that is 99% likely the result of an infusion set change earlier today. I find that no matter what kind of set I use, I more often than not get highs after insertion. I have a grab bag of tricks that I use to avoid the rise, but none of them worked today. I finally gave up and inserted a new set.

These problems are not the fault of my pump, but they are the fault of an insulin system that makes me utterly dependent on the short-acting insulin delivered by my pump. Why should I have to accept high BG numbers for 4-6 hours every three days? I hate these “blameless” highs. I ate a small breakfast today followed by a 3-mile walk. Then I changed my infusion set and my BG climbed from the 80’s to the mid 200’s in the next couple of hours. If I’m going to have a snarky high, I should at least get to have a cupcake or a chocolate-covered donut.

My Dexcom G4 was not an innocent bystander to this mishap. In fact it was continuing its 2 month vacation from accuracy. Because I felt good and the Dex showed my BG to be level, I didn’t test after breakfast until late morning. I was surprised to see a BG of 181. It didn’t make sense so I tested again: 180. I took a correction bolus and calibrated the Dex which was off by 75 points. I was well up in the 200’s before my BG began to fall as the result of several correction boluses and the new infusion set. When my BG finally started to drop, I gave the Dex an extra 30 minutes to see if it would react. Not even close and I recalibrated it downwards. This is the third day of a sensor that has been a problem from the start.

So what am I going to do besides tear out my hair and curse everything related to diabetes?

First I’ll call Dexcom whose reps have been very helpful by replacing sensors and giving advice during the last couple of weeks. I’ve been using new hardware for the last month and the next step might be to try another new transmitter.

Secondly I am going to make changes to my insulin regimen. In a recent post titled Lantus is Lovely and Amazing,  Katy of Bigfoot Child Have Diabetes revisited the idea of her son using Lantus in tandem with his pump. She saw the benefits as minimizing the effects of a pump failure/bad site and a way to give her son more flexibility for water activities and in general some pump-free time. The use of the pump along with Lantus (or Levemir) is called the Untethered Regimen and is best described by Dr. Steve Edelman in a 2004 article. I have used the untethered regimen several times on beach vacations and wrote about it in a July 2013 blogpost.

I have always thought that the untethered regimen makes a lot of sense. An infusion set insertion, a bad site, or a pump problem will have less of an effect with Lantus in the background. Because you take some of your basal with the pump, you still have the ability to reduce or increase basal rates as needed. I’ve had great success when I have used the Lantus/pump combo in the past and as I said in a comment on Katy’s post: “It works so well that I’ve often wondered if I should do it all of the time.”

So that’s what I am going to do. It’s time to experiment with changing up things because I am not happy with where I’m at. I’ve lost confidence in my ability to get good results by doing my normal “right things”. Of course the real villain here is Type 1 diabetes and there is no doubt that I am going through a bad period where minor things are affecting my blood sugar quickly and erratically.

I have ordered Lantus from the pharmacy and will start using the untethered regimen when I have the long-acting insulin in hand. Will I stay on a combined Lantus/pump regimen for the rest of time? Probably not, but I think it will make things easier in the near future. It could be that I just need an increase in basal, but I’m tired of tweaking things and overreacting to highs and lows.

One thing that I always try to remember is that my body does not know the difference between bolus and basal insulin. Formulas and rules of thumb are just that. Sometimes I need to be creative to figure out ways to deal with blood sugar excursions. Please realize that I have used the untethered regimen before so this is not me going off wildly without understanding what I am doing. I see my endocrinologist in two weeks and this will certainly give us something to talk about. She knows that I am a headstrong and self-managing patient and she has never been upset by that. In fact she always emphasizes that this is “my diabetes” and she is my coach.

The final topic for today is related to syringes. Whenever I’ve used syringes in recent years, I have pulled them from a box purchased on 11/15/04. Do you think I should buy new ones???

Syringes_Old

Disclaimer: Nothing I say here should be construed as medical
advice and please do not change your insulin regimen without
consulting with your medical team.