New to this forum; got diagnosed early this year, handling it well I guess, got questions though

Type 1 and LADA
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Hi guys. I have been diagnosed in March this year. I am clearly still honeymooning, because I only need 8 units of Lantus daily. My bolus insulin is Humalog.

I am a rather weird case bolus wise, because while one unit brings my BG down by 60 mg/dL, it can only cover about 10 grams of carbs (sometimes only 8 in the morning) … unless I eat high carb meals, in which case the ratio seems to be 12-13 instead. I suspect that at low dosages, the bolus insulin is absorbed less efficiently.

Anyway, I diligently pre-bolus (typically 15 minutes), and have reduced my daily carb intake to about 20-100 grams per day. I also made an effort in losing weight, and I was successful - after leaving the hospital, I weighed 87 kg. Now I’m at 74.5 kg, and with a BMI of 23.9. When I was diagnosed, I had DKA, which made me lose about 5 kg, so I was at 92 kg before all of this happened. (I did nothing special to lose weight, I simply reduced my meals to stay at a calorie deficit, sometimes even fasting. My electronic scale tells me that I’ve been mostly losing fat.)

BG control wise I am trying to get the most out of my Libre, and so far it worked very well. Sure, I’m still honeymooning, but if I don’t bolus carefully, I can easily spike to >180 mg/dL. However, that has happened only once since I was in the hospital. And, my last HbA1c was 5.3%. My daily mealtime spikes usually stay below 140 mg/dL, since as said, I pre-bolus, and also eat slowly when eating fast acting carbs like bread.

I read TONS of stuff about T1D. Maybe too much. One big problem of mine is anxiety. When the BG rises, I get nervous. Somehow I developed a big fear of high BGs. In the past, it drove me mad if the BG was at, say, 160 mg/dL after the bolus insulin ran out in case I mis-bolused. Felt like the end of the world and that any spike will 100% net me complications. I think everybody here will agree it ain’t. 160 mg/dL are nothing to worry about if I bring that down quickly enough, and if it doesn’t happen too often or stays there for too long. My fasting BG is around 90 mg/dL.

So, the questions:

  1. I am using Lantus, however people have recommended Tresiba. This forum seems to be full of Tresiba fans. However, I also want to start exercise. And, as said, I’m honeymooning. This is a rather confusing combination, because I’ve read that very low basal doses like the one I use can interfere with the action profile of basal insulins, meaning they don’t last as long. Also, if I exercise, I have to lower basal, which is tricky with Tresiba. I have read here though that some people did not have as many post-exercise problems with Tresiba as with other basal insulins. So, I want to use up my current Lantus cartridge and then give Tresiba a chance. Or what do you think?

  2. For the Lantus -> Tresiba transition, I think it would be good to do this over a weekend, to be better able to constantly check my BG. I suppose it will be elevated and require regular correction bolus until Tresiba is set in right? But what about the people who needed weeks to get Tresiba to work stable?

  3. Exercise: If you use Tresiba, how do you combine it with exercise?

  4. In the long run, I want to get a closed loop. I am very tech savvy, have been developing software for about 20 years by now (mostly C and C++). Any of you here looping? How much does it make your T1D management easier, and what is your time-in-range (also what is your target range)? And, does a closed loop make sense in an “untethered” manner, that is, closed loop + low-dose Tresiba for example?

  5. To get back to the anxiety, I am trying to come with some guidelines to put my mind more at ease. My current one is: I aim for keeping things in tight control 90% of the time. 7% of the time I moderately exceed the target range. In 3% of all cases, all bets are off (this covers infections, unusually high stress levels etc.) Currently I am way above that - 99% time in range, 1% below. This will probably get worse after honeymoon, but this is another reason why I’m thinking about Tresiba, pumps, closed loops etc. to “prepare” myself so it does not get much worse. Anyway, do you think this 90%/7%/3% rule is good? I have a target range of 70-160 mg/dL, and as said, a target fasting BG of 90 mg/dL. And, any other tips for dealing with high BG anxiety?

  6. As an extra to #5, what are fasting BG ranges you’d consider “safe”? I ask this to further put my mind to rest. As said, I try to keep a target fasting BG of 90, and generally keep it in a 80-100 range. But I suppose even 110 would not be so bad, right? What is a fasting BG level that you would consider worrisome? What would be your threshold? 115? 120?

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Regarding questions 2 and 3: I switched from Lantus to Tresiba. The transition took a lot longer than a weekend. Each tweaking of the Tresiba dose takes 3-4 days to settle in. I found that my daily basal with Tresiba needs to be spot on…using 1 unit more or less can throw me off. That said, once I was dialed in I like it much more than Lantus. I could not avoid 4 am lows on Lantus, with Tresiba I usually flatline overnight.

I play ice hockey with Tresiba basal and have no problems. I use Fiasp bolus and fast carbs before games to manage BG and CGM with fast carbs during games. I did the same thing with Lantus and have not noticed a difference.

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Hmm that’s what I was afraid of. Will be difficult to combine the weeks of adjustment with work.

But, you did not need to reduce your Lantus dose for ice hockey?

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With basal, I tend to be a little aggressive on my dose, aiming for flatline overnight. For ice hockey or any other workout, I generally have to feed myself with fast carbs to prevent a drop. There’s a balance I try to hit and it seems to work out for me. Not everybody will be comfortable with that approach. Basically I developed my approach by trial and error and decided I would rather be at 80-100 taking fast carbs to raise my BG before a game. There is a good book called “The Diabetic Athlete’s Handbook” by Sandberg with some guidelines that might be helpful.

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About basal and physical activity. I keep my basal at a lower level. It gives me a flat line at night, but bg would creep up slowly during the day. I prefer it that way because when there is no physical activity I always have time to correct with a bolus, while when there is physical activity it gives me freedom not to worry about falling low.

Fasting target I think is a pretty individual thing based on what is the most comfortable and attainable for you. I target at below 100 while fasting, only because it is what healthy people have. I’m OK with being slightly over 100 (100-110) too. I would correct it sometimes, sometimes not, it depends on my mood (since every such correction is a potential to manage a possible low that might follow) and current activity level (the more activity the less likely I would correct).

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You sound like you are doing great and just so you know most diabetics have a hard time maintaining an A1C in the 5’s. I personally haven’t ever been able to achieve below the high 6’s. For me any fasting BG of 70-115 is fine and I wouldn’t make any changes based on that alone. I think Tresiba is a pretty good insulin and I have far fewer lows since starting it, although because of hormones my dose hasn’t ever stabilized so I’m constantly juggling having a little too much or not quite enough basal.

As for thinking that you are reading too much diabetes stuff IMO there is no such thing. The more you know about how diabetes works and how your body works then the better your chances of tight control. I’m not sure if it’s @DrBB or @Terry4 who is on a DIY loop but hopefully he’ll see this and chime in. Keep up the good work!

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Hi, @athx9891!

I agree - it sounds like you are doing wonderfully! I have a son with type 1 - dx when he was 3; he’s currently 15. He’s kept his a1c from 5.6 to 6.1 for nearly all that time. It’s not uncommon for him to see numbers at or above 200, particularly when the variables are harder to predict. I agree with you - this is nothing to fuss about if you’re able to address it timely.

I’m curious about you thinking it’s weird to have a CF of 1:60 and a ICR of 1:10. Caleb is about 1:60 or 1:50 for correction and his ICR varies by meal, but is as low at 1:8 for breakfast. Your stats don’t strike me as weird at all. :slight_smile:

We’ve been at this for a while, but I remember being anxious (that’s an understatement) back in the early days. Everything seemed very foreign, and in my mind, I thought we could reach perfection as long as we put in the effort and educated ourselves. I’ve learned in a painful way that perfection isn’t a word that really belongs in the diabetes dictionary, if there was such a thing. We’ve learned much, and are diligent and are pleased with Caleb’s control, and have learned to accept the out of range numbers are something that we can’t always avoid.

As far as looping, we have looped. Caleb has used it when traveling on his own to keep him safe at night. It is helpful. We have not found it to provide tighter control. We’ve found it useful to help with overnight safety, and for some foods that are either unfamiliar to us, or are complicated for Caleb (pasta is an example).

For guidelines - that’s a tough one. For me, if I create hard measurements to adhere to, I feel I’m setting myself up for disappointment, so I try to think of things more loosely. I’m happy with a respectable a1c, for example. We get a weekly report from Dexcom that tells us Caleb’s within range percentage. We’ve reached a range I’m happy with and we use that info for changes - if it creeps down, then we need to determine why and make changes. 90% can be a hard number to achieve without letting diabetes consume most of your consciousness. I believe @Terry4 achieves this with loop, eating low carb and other strategies. For Caleb, that’s not our target.

Safe range is definitely much bigger for us. I have no issue with a rolling 140, for example.

As far as dealing with anxiety, what helped me was hearing from other people living with diabetes and realizing that a 200 isn’t the end of the world, for example. Diabetes is hard. We have a lot of great tools to help us. We’re doing everything we can to keep Caleb safe. Although the numbers are measurements of our performance, they are first and foremost information to help us make decisions on what to do next.

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Murphy’s Law kicked in today. Right after writing how I am trying to keep things under control … rollercoaster today! I ping-ponged between 57 and 150 today. Currently it is rising again… it has not been my day. I’ll let it rise and not treat it until most or all insulin is out of my system. Enough rollercoasters for today.

Well, I thought it was a little weird because what I’ve heard is that typically a CF of 1:60 would correlated to a higher ICR, like 1:18 or 1:20.

Looping does not guarantee tight control, that’s for sure. What it certainly can do is to fix mistakes, or handle later peaks. For example, if you eat something with lots of carbs and fats (say, pizza), and 4 hours later you go to sleep, you might have peaks during the sleep. Either, you set up alarms to handle them (it is not nice to wake up at 3 AM because of a high alarm though), or you don’t have an alarm, and wake up in the morning to a BG of 260. Or, well, let the loop handle it for you. It might still cause a peak of 150 or 160 or so, but at least the loop will bring it down. However, looping does not make carb counting redundant of course. What did you loop with? AndroidAPS? OpenAPS? Loop?

I am quite convinced by now that reducing carbs is important for T1Ds. A high carb diet can yield the same A1C as a low/medium carb one, but the likelihood for rollercoasters is much higher. I don’t think you have to go full keto, but eating many carbs is just risky as a T1D. And yeah, 90% with a standard Western diet with >200g carbs daily is nigh impossible to achieve without going insane.

And yeah, Diabetes is hard… sometimes I want to go to sleep and not wake up to this :frowning:

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I transitioned from Lantus to Tresiba about 5 months ago. Not too big a deal.

However with you being in honeymoon, at the very small doses you are taking it’s possible that neither will last a full 24 hours and you might do better with a split dose. Or if you are taking once a day maybe there’s a better time of day to take it than another.

I find that Tresiba is closer to 24-hour coverage than Lantus.

I very slightly (10%) reduced my Lantus dose when I transitioned to Tresiba.

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Theoretically, yes. We did not find this to exactly be the case. Caleb used Loop. He would still input carbs, and if he didn’t get them right, Loop would help, but not guarantee correction. For example, if Caleb ate pasta and did not input carbs at two different times (part when he ate and part hours later), there was no high temping that Loop could do to keep up with a later rising blood sugar. For us, it took about the same amount of effort and overnight intervention. He can achieve similar results with an extended bolus on his regular pump. Loop did smooth things out, for sure. He went on a weeklong trip for a tap intensive program and Loop watching over him and turning off basal during periods of intense training helped greatly, but didn’t avoid the need to intervene.

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@Lorraine Hmm I do wonder if the OpenAPS oref1 algorithm could correct. It has the features Super Micro Bolus and Unannounced Meals. See this post for an explanation why this matters. Loop is rated as phase 4 technology there.

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I’m familiar with OpenAPS. Since we started Loop about a year and half ago, Loop has enhanced it’s features as well. We’ve been temporary users and Loop was more simplistic to set up and easier to use which is why we chose it. I have all the components for OpenAPS though should we wish to take the plunge.

For us, the open-sourced systems are still very user intensive and given their reliability on out-of-warranty and hard to find insulin pumps, it’s not something I feel comfortable fully vesting in. The benefit for us, after years of learning how diabetes works with Caleb, is not significant enough to justify its use on a regular basis. Caleb has used OmniPod almost as long as he’s been living with diabetes. The tubelessness makes converting to another system an even harder sell.

I think I may sound like I’m not a proponent of closed-loop systems - I completely am! I think they make a significant impact on managing diabetes and are particularly helpful for certain patients - children in particular. I wish this technology was available when Caleb was younger - it would have saved us a lot of grief. I’m very optimistic for what is to come commercially for the community.

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@Lorraine Sure, I understand. The open source systems aren’t really well suited for kids in my opinion. They require significant technical understanding from the user (not just from the legal guardians, but from the user directly), and, yeah, there’s the warranty thing. Plus, I suppose kids are extra tough with T1D because of the effects the growing of their bodies have. A T1D adult is more “stable” in a way. And yeah, unfortunately the OmniPod hasn’t been reverse engineered yet.

I share your optimism though. What I’ve read about the plans for the next OmniPod, the tandem x2 firmware upgrade etc. many of them use the TypeZero closed loop algorithm, which sounds like it is about as advanced as oref0 or even oref1 (I saw mentioned that it can attempted automated correction and mealtime boluses). And many of these products are planned to be released in the next 1-2 years (some even earlier). This sounds really good.

Me, since I’m a geek who tinkers around with tech, I’m perfectly suited for AndroidAPS. Once I get a compatible pump, I’ll try that out. Ideally it would be a tubeless pump, and I think more of these are going to come out soon.

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We’ve found the use (not set up or maintenance) of Loop so straight-forward, what is to be gained from a closed loop for a child with diabetes in a school setting, is definitely worth any learning curve needed. Over the years we’ve been faced with many wonderful and capable school nurses and also a few incompetent ones which have resulted in dire circumstances requiring urgent intervention. Looping would have avoided or at least greatly mitigated against these deficiencies.

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I think the author is Shari Colberg. Great book!

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Yes that is the one!! Thanks.

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Well maybe today is doing you a favor :slight_smile: I’d recommend not worrying about hitting specific targets (e.g. 90% in range) at this point. Try to get it right each day, learn from your experience and aim for continuous improvements. Targets are just that. If you have diabetes there is no result that guarantees that you won’t have some sort of complications down the road and as many of the Joslin gold medalists can attest, just because you have a stretch of poor control doesn’t mean you are fated to bad long term results. Luck and genetics play a big role in outcomes. You’ll be sugar surfing for a long time - learn to “enjoy” the ride.

Maurie

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Its good that you are proactive. I think that it is VERY unlikely that you will be able to maintain your current goals after honeymoon is over. Your current sugars seem normal - almost non-diabetic. You might, eventually, be more 30/30/30, but it depends.

If you are interested in a closed loop system, I would advocate starting that sooner, rather than later, when your system is more forgiving. That will give you time to adjust to the tech without as much risk. You sound pretty “type A.” Type A’s tend to perform better on pumps. One of the biggest problems that I have heard with closed loop tech is that diabetics don’t trust the system and override everything. I am that type - paranoid about the closed loop system. The Kinks - Destroyer + Lyrics! - YouTube

Frankly, I don’t see any difference in which type of insulin your on. I dont imagine your results change much. Your numbers are perfect.

Most of us, I’d say, have more anxiety associated with either highs or lows. Both come with risks. I am one that has issues with highs. For that reason, I saw a doc who had more anxiety about lows. We fought one another into a happy medium. I’m a little concerned about your anxiety level regarding highs, in that, your going to hit 300. That WILL happen. C’est la vie. I want you to be prepared for that. No matter what you do, you will reach 300, at times, after your done honeymooning. Those of us with “high anxiety” tend to overreact and send ourselves low. Thats the side effect of having anxiety over highs - too many lows. Not lows of 60, but lows around 30. That will happen.

Don’t let everybody scare you about complications. They tend to over do that. Your gonna be fine. Your gonna hit 300 and 30, but your gonna be fine. They try to scare people into being proactive because many people aren’t naturally that way. You are their gold star, proactive type of patient. Don’t let them scare you, that’s not gonna help. I worried more that you might hyper regulate the system into chaos. That can happen.

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I think that it is VERY unlikely that you will be able to maintain your current goals after honeymoon is over. Your current sugars seem normal - almost non-diabetic. You might, eventually, be more 30/30/30, but it depends.

EDIT: Of course, it also matters what the range is. Mine is 70-160. I know that something like 80-140 is nigh impossible to stay in 90% of the time, but 70-160 may be more realistic.

I think I can do it, or at least stay close, because I achieve them only by restricting carbs, careful pre-bolusing, and eating slowly if the food spikes quickly otherwise (bread for example). I avoid high carb food, because with these, I could never ever reach my goals. (By high carb I mean the overall carb amount, not the relative carb content, so I’m fine with eating a meal with rice, as long as there’s not too much rice.) I’ve seen long-time T1Ds achieve 90% by keeping their carb intake reduced, which sounds logical to me. 30/30/30 sounds more like what I’d get with a standard Western high carb diet. Also, if I don’t carefully pre-bolus and bolus correctly, I can very easily spike well over 200. I can notice significant BG bumps even if I eat a few grams of carbs. So I doubt the honeymoon is helping me much bolus-wise.

As said, my current struggle is rather mental. Anxiety and despair. Reading stuff like “you’ll never achieve this” or “later in life, your other hormones will fail too”, or “you will most certainly lose at least a kidney or your eyesight no matter what” brings me down and makes me want to give up. I have to motivate myself to get back up, which isn’t easy, especially now when my Libre sensor seems to be on the fritz, jumping constantly by 7-20 mg/dL up and down (even though the fingerstick measurement suggest stable BG).

And I want a loop precisely so I don’t have to hyper regulate anything :wink:

But I doubt I’ll want the Libre for looping. It just does not seem suitable for it. The sensors have some weird internal calibrations that can go haywire, which is dangerous with looping. I’m thinking about a G6 or Eversense.

As for getting a closed loop now, I don’t know if this is a good idea. Currently, there aren’t any commercial solutions on the market that are good enough for me (the 670g is far too conservative, and requires way too many calibrations). Tandem will get a firmware upgrade in 2019 probably, and the next gen Omnipod will have closed loops too. Also, I think I’ve heard of some other tubeless pumps coming out soon with closed loop functionality. I’m a LADA, having been diagnosed at 35, so hopefully my tight BG control will prolong my honeymoon some more.

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Keep your expectations low. That will keep you from getting frustrated or disappointed. There is a limit to what you will be able to control. This is not a traditional deterministic system. I would not approach it from that perspective. Walk into this with the understanding that you can do the same thing twice, under exactly the same circumstances, and get different results. Do not attribute that to some sort of failure on your end. Diabetics who do that take a real beating, emotionally. I, personally, would not describe this as a deterministic system. I would urge you to accept “diabetes black magic” as a system variable that is highly influential and always at play.

Your body will play like it plays and no one will know better than you, how it plays. Give yourself some time to understand that. That is an achievement, but it will take time. Be careful of hard and fast rules, this system is dynamic. Your body will change over time. Your relationship with your illness and your understanding of your body will change over time. Physiology is a dynamic beast.

I think you can put the complication concerns behind you. Your not the type that should even worry about that. Trust me. I am your age and I’ve been diabetic for 25 years, long before we had such good tools, and I have no complications. You will do even better. You will be dead from old age before you develop complications.