@john_coburg, Great thread! I love it all! This is what makes FUD a great place to be!
Everyone has shared really valuable perspectives.
Some things you said resonated with me (which I’m paraphrasing out of too much laziness to find the quotes):
At what point does glycemic improvement no longer support the increasing efforts for diminishing returns?
Do you really need a pump for improved control? Improved quality of life?
What are you missing?
Your body’s insulin sensitivity changes wildly from day to day.
From my perspective (diagnosed at 21, 8 years on Lantus/Humalog, 6+ years on Omnipod pump first with Humalog and now Novolog, but I have to Inject for meals, Dexcom user since 2012)…
…I would ditch my pump in a heartbeat if I had consistent insulin sensitivity from day to day, hour to hour. But I don’t…mostly due to the fact that my hormones cycle me through resistance and sensitivity requiring basal changes every two or three days…sometimes every few hours.
I have to inject for corrections and meals anyway. So I wear a pump and take about 7 shots a day. Otherwise my pod sites leak and fail. Which they leak and bleed and fail by day 3 anyway…but this way they just leak and fail less quickly.
So for me…my pump is a necessity for changing basal needs. I can’t do it on long-acting shots. Not as quickly and as safely as I need to. So my pump has to stay for that reason.
But as to techniques (sugar surfing on a pump vs frequent monitoring of CGM plus MDI)…you know your requirements for your quality of life. And if you know that you do not want to wear a pump, you are probably right about that. I absolutely hate wearing a pod. But I need it so I wear it and I forget about it a lot of the time. But I would love not to wear it. And if I could ditch it to accommodate how active and skinny and clumsy I am, I absolutely would.
A note on Sugar Surfing. I am happy it works for people. It does not work for me. It does not fit with my daily assessment of how sensitive I’m going to be to carbs that day…or how resistant I am to my basal that day. Constant tweaks and microdoses just absolutely muck up the data and it leads me down a very dangerous path. I gave it a go. And then I gave it a go again. It wasn’t a fit. That’s not to say that it wouldn’t help you. It might. But it didn’t help me. And sticking with what I knew to be true for my body and my diabetes was the best thing. And I should have returned to it sooner.
There are people who are big proponents of, “What does it hurt to try? It might work!” And that is generally true. But I tried things that worked for other people for far too long and it cost me a lot of glycemic control and a lot of my quality of life. You know yourself and you know what you are comfortable trying for your regimen. And you know your deal breakers. If a pump’s not on the list of things to try, That’s Okay.
You’re not doing anything wrong. My control is fantastic for a mid-30’s woman with an unpredictable amount of daily exercise and sudden activity due to being a mom. It is fantastic. It’s not fantastic compared to what my body would do if it wasn’t diabetic. But I am diabetic. And I Live. And I have found for myself in the last 12 months that intersection between Quality of Life and Glycemic Control. My A1C is not in the 5’s. I would love it if it was. It used to be. But that’s not in the cards for me given all of the above and there’s no Control Test anywhere of “Allison and Her Current Choices” vs. “Allison the Ideal Diabetic” to see what my “Best” glycemic control would look like. We’ll never know. So I shoot for “my current best” and let go of the rest. It’s not worth chasing my tail over. I’m keeping my eyes on my own paper at this point because we’re all running our own race. I love that others on here have super low A1C’s. I do love that for them. But I’m not on that list and I’m totally okay with that. Different races.
I can’t spend my whole day chasing 100 or whatever people are shooting for bc my cards are stacked freakin’ high against me to begin with. But I do the best that I can up to my limits that I know are there…bc I went wayyyy past them trying everything under the sun and it was a complete mess…and now I’m happy. And with the best achievable A1C that I can attain in my current life circumstances.
FUD is great. Discussion is great. Advice and help and tips are great. And I hope that you peruse those things and eventually find your intersection of Glycemic Control and Quality of Life.
Thanks @bkh.
I’m having a hard time with Levemir so far.
Here are my split doses so far: (am/pm)
26th 4u / 8u
27th 8u / 10u
28th 9u / 10u
29th 9u / 11u
30th 8u / 11u
31st 9u /12.5y
1st 9u /
I found at night i kept rising, hence have been jacking up the nighttime dose, yet during the day often finding i’m needing more bolus than usual, so have been jacking that up too. I seem to be chasing my tail, as the more i inject, the higher i rise, and my Levemir is soon going to be >50% of the my daily dose, which doesn’t seem right to me. I know it floats around for 24hrs, but is meant to peak at 8hrs, so feel it should be reacting to my higher dose by now.
The other thing that’s concerning me is that the nightime dose is at around midnight, while the morning does is arund 8am, so i have a 16hr gap after the (smaller) morning dose and an 8hr gap between the (larger) nighttime dose, which also doesn’t seem sensibe…yet i’m high at night and high during the day at the moment. Should the split aim for 12hr/12hr ?
So far, miaomiao / CGM is really helping, but Levemir is so far causing me some considerable trouble.
Welcome to the party! i’m glad you’ve taken such a positive attitude to your new affliction. I think my initial approach was similar, but years of struggling with violent inconsistencies wore my patience down, as my threads probably bear out. But i’m keen to see and hear of others’ approaches, particularly where they seem to bear fruit.
I tried this for a year or so, but found two things:
i’m very slim anyway (62kg, 5’10) and found further weight came off which wasn’t desirable
i found, after an initial improvement in glycemic control, my body somehow become conditioned to the new norm, and then found it started reacting to 10-20g CHO dinners like it always had to 100g CHO dinners. it’s like it said “right, you tricked me for a while into thinking all was well…well done! now i’ve learned your tricks and i’m going to go back to my old ways of ruining your life just like i used to, no matter how little carb you take” … so i found myself getting spikes on a steak-and-roasted-veg
dinners, which needed increading bolussing… and then suddenly it woudn’t need a bolus and i’d violently hypo. it’s like i couldn’t win, no matter what i did.
yes, i found this too. the body become ‘used’ to low carb, so much so that taking any more than usual brought about a more violent reaction than usual. that would sugges to me that low carbing is dangerous, in that it lulls the body into a false sense of security that it vomits on when a usually-okay amount of carb is consumed. i find that highly frustrating. i also found after a while (as described above) that even sticking with the low carb diet brought about glycemic volatility after a while. my body found a way of getting back to its ‘steady state’ of volatility, no matter how calming i tried to be to it.
Absolutely. But when a 30min run will one day bring me down 3mmol, and the next day -6mmol, the next day do nothing (or raise), or 10g CHO one day raise me by 3mmol, the next by 6… i find my management to be nothing more than a gamble. And for someone mathematical like me (my job involves me sitting in front of huge spreadsheets all day) - this is maddening.
doubt it’s the shower (!) … i think just ‘getting up’ out of bed triggers cortisol and adrenaline, that push you higher.
Right. This balancing is of course the right approach, and is what i try to do, and have tried to do for c. 15yrs. But when the scale of the impact walk/food/insulin/whatever is unknown, due to it varying continuously, how is it possible? I’m at 9mmol, and rising. OK, i’ll walk for 20mins, or take a 1u bolus. That might work one day. The next i’d need triple the amount. And not knowing ex-ante makes it feel an (almost) pointless effort.
Right. But i’ll have ‘roasted veg’ or ‘nut’ moments instead, where i’ll spike in the absence of pasta/rice/traditional carbs.
Right, but you can’t just switch to using fat as your store of energy. This take months, if not years of dedicated practice. I’m i’m going for a 100mi ride tomorrow, i need some CHO tonight. Nothing else will do - otherwise, i’ll hypo in the first 30mins and spend the rest of the day struggling to keep above 3mmol.
As discussed earlier, i didn’t find this. My body seemed to alter and require insulin for things i didn’t need it for previously, so felt just as weighed down by the strain of having to inject, watch, correct, etc. Being low/almost-zero carb seemed to result in just as much glycemic volatility for me, unfortunately.
that’s my point. i think the effort required for each of these moves is different; e.g. moving from 6 to 5 takes a LOT more effort than to move from 7 to 6, so even though the ‘result’ is a linear move, the effort input change is not linear!
What i would really like to see is evidence of how much a move from 7 to 6 and from 6 to 5 is really worth, in terms of clinical experience. A big study of 1000s of T1Ds, some at 8, 7, 6 and 5, and measure over, say, 20yrs, what percentage of each of them suffered (serious) complications. It could (i hope) be like the ‘portfolio diversification’ effect, where you only really need 10 or so stocks to get almost the same diversification benefit of 100… e.g. perhaps moving to 6.5 gets you 95% of the way there, moving to 5.5 gets you an extra 2 or 3%. Again, i suspect serious amounts of non-linearity here. But i haven’t seen any such studies - has anyone else?
I feel there is. The bogeyman is the wildly varying effects of inputs that we spend all our lives measuring, that are key to our management. If they stayed (almost!) constant, i think management would be a walk in the park. Derive formulae, from empirical observation, and then apply them. But when the formulae keep changing, hugely, what on earth are we to do?
Not at all - i’m very grateful for the input.
It happens to you too… but how often? For me, it’s a few times a week.
I have given up trying to work out why it keeps changing… i tire of it now. Can’t it just be random? Quantum mechanics suggests there is plenty of randomness in nature.
How much effort it is worth, is key to me. c.f. the point i made above about wanting to see a study to help evaluate the likely worth of pushing my A1C 1% lower.
Meanwhile, well done on a great approach that seems to work well for you. You seem to have a great handle on things, and that’s very good to see. I’m deeply envious, of course!
This is interesting. I never came across a ‘phenotype’ of diabetes - although long suspected something along these lines might be the case. What is he quoting from when he says this? does he refer to anything in particular?
(I also never came across the phrase YDMV, and had to look it up!)
Do you know the right percentage? It is the one that works!
My basal has been higher than my bolus on 17 of the past 20 days, and I am not stressing about it.
You have to keep adjusting it. It takes time to get it properly dialed in. If you rise at night (without food causing it), take more Levemir at night. Just that simple.
I think that would be better, to try and aim closer to 12 hours. Maybe aim for your evening dose to be after your evening exercise. At your dose, your Levemir is going to last about 12 hours. So a 12 hour split would be ideal.
Phenotype is just a distinct set of observable characteristics. Nothing special except for the fact that the whole idea of type 1 and type 2 is ridiculously simplistic and inaccurate.
It’s possible, seeing your prior response, that you may have a “brittle” phenotype. Check it out and see if you think it fits.
It’s possible your basal requirement kept rising as the very last remnants of your previous basal left your system. In any case, as Eric said, your body determines how much insulin you need, your job is to administer it. So keep incrementally increasing your basal dose until your BG no longer tends to rise all by itself. And a 12-hour interval does seem like it could help remove the extra complexity of overlaps. There’s nothing important about basal to bolus ratio. There is nothing related to health outcomes. Take the amount of basal that keeps your BG steady in the absence of other factors, and take the amount of bolus that brings you back to a good BG level about 3 or 4 hours after eating. Then adjust the pre-bolus time to reduce spikes without going low during the meal.
Thanks @Eric and @bkh - for all your comments here. The only reason i raised this was because i acutally read the intsruction booklet, which suggested that the basal dose should be 1/3 to 1/2 the total daily dose… so going above half raised an eyebrow. But if you’re saying you have done this frequently and doesn’t seem to be presenting problems, then fair enough. I just wonder why they felt the need to mention that though?
I have hiked to 10u and 14u, and it seems to be calming down. 24u of Levemir is far higher than my 16u of Tresiba, so it feels a little unusual in that respect…but i guess these units aren’t comparable, so fair enough.
The real reason i switched to Levemir, on reading various people’s helpful advice here, was to be able to make rapid changes to my basal dose. I have two upcoming examples of events that i have long wanted to be able to make such adjustements:
i) this Sunday i have an 80mi (round trip) bike ride to the coast, in what looks to be 34C heat, but is pretty much flat. A fairly decent amount of calorie burn here, but nothing off-the-charts.
ii) weekend of 21-22nd Aug i am attempting the ‘Welsh 3000s’ - a hike of every mountain >3000ft in Snowdonia inside 24hrs, which is around 30miles of distance and c. 4000m of ascent. I suspect it’ll take me at least 16hrs, from a 5am start, and think it will be a very tough day, physically and mentally.
Of course this (and any other comments made) isn’t to be taken as ‘medical advice’… but what do you think i would be best placed to do in terms of my morning and evening Levemir doses for each of these days? I don’t yet have a feel for the ‘delta’ of a reducing by 1u, and how i should expect such a reduction to do to my daily ave BG, hence the question.
Thanks Jon. I had come across the ‘brittle’ term in the past and it has resonated somewhat, but I saw little scientific intelligence around it, and my endocrinologist was dismissive of it. It would appear to be intertwined with an emotional feedback loop that might operate, where the stress of seeing volatile excursions serves only to increase their volatility, making for vicious circles of uncontrollable levels. I don’t know much about it, but am sure the brain has a larger role to play in this disease than perhaps we think.
This was a really good post, Allison. Thank you. You might be right and that i just shouldn’t be running in such a race, but i felt i really should have been doing better than i was. Seemingly spending all day watching levels and yet still losing a couple of mornings per month due to overnight hypos i felt was losing on both fronts, so i’m glad my CGM is helping on that front, even if it means i am being woken up at night - i’d far rather that than what was happening previously.
Well done for keeping a great, positive attitude. I agree FUD is a great place, and i’m happy to have found it. My endocrinologist has shown himself to be a pretty useless resource (technically and emotionally) compared to discussions i have had on here.
Thank you again.
Completely get it! I support everyone trying to find their “better”. Absolutely! That’s it’s own Quality of Life influencer. My goal is to encourage finding your Better without going as far past it as I did…which brought a new set of problems for me. That’s all!
Thank you for your kind words and good for you on working for your own QOL!
Your intensity level will vary depending on the grade, and overall a lot of this depends on your speed and pack weight. But at the duration you are talking about, you will most likely be a little below that “infinity” level where you no longer need any insulin, because sustaining that infinity level for 16 hours would be very difficult.
Test this out!
It will be necessary to test this FIRST, but I think something along the lines of cutting your Levemir down drastically, like 25-40% of your current dose, would be appropriate.
If you take too much basal, you will need to feed it the entire time, and that will become difficult, because the hypo’s will sap your strength.
Also, if you cut your Levemir down that much, it would only last around 6 hours, so you would need to take your Levemir a few times during the hike.
If you can get some diluent, then you could treat any BG rises with the diluted insulin. I think having the ability to micro-dose would be very helpful for you. All it takes is a vial of diluent so you can pre-mix a vial of diluted insulin, and some syringes.
If you can’t get diluent turned around that quickly, I can hook you up for no charge other than shipping.
(If all of that dilution stuff seems like it would be too difficult, than just make sure you have a ridiculous amount of carbs with you, so that IF you need to treat a BG rise with a 1/2 unit you will be able to “eat away” most of it.)
This seems…not right. While impossible to know for sure, it seems like what’s happening is that your liver is putting out more and more glucose no matter what you eat. There’s really no other way (that I’m aware of!) to make your glucose spike after eating a low-carb dinner. THAT said, it does really matter what those “veggies” were. What were those veggies, sir??
I am no doctor…not even a medical specialist…but there are just too many people on low-carb who do not experience this for this to be a broad fact. It may be a fact for your physiology, but given the broad amount of data out there surrounding low-carb diets, I think there may be another variable that we just haven’t pinpointed yet.
That being said, there’s no doubt that my body is currently not conditioned to handle carbs well, and very well may spike higher than it otherwise would. However, that does not mean my body would respond well to carbs (esp simple carbs - sugar, bread, pasta, potato, etc.) even if conditions. Hence my initial diagnosis.
I think we all see variations of how the same activities impact glucose differently on the daily. Sometimes, significantly. I just continue to mitigate and adjust based on the reality in front of me. Today, my bg was about 30 mg/dl’s higher than normal So… I walked more and drank more alcohol today. Not ideal, but OK. I’m still not where I want to be based on what I expect, but 20-30 mg/dl’s delta is well within any testing device’s margin of error, so it’s not worth worrying about in the big picture.
Oh, it’s definitely the shower! Getting out of bed raises me all on its own (as does an intense dream). The shower is a huge factor in my glucose challenges. I’ll spike me 30-50 points often. Now, of course, it’s not the shower that’s directly spiking me, but the shower process seems to “spike” my liver to create more glucose for whatever the hell reason. Talk about maddening!
This makes sense. It does sound difficult. I do wonder, however, if there are factors that you’re not considering that may be behind these seemingly inconsistent behaviors? I ask because it sounds like your diet does vary. I wonder if you locked down your diet to be identical for 2 weeks if you’d see any better consistency in your bg numbers.
Let’s be more precise here - what are the veg you’re roasting?
Oh but yes you can. Read up on ketosis. I’m not a keto guy, but keto is a real thing and it works. And it’s rather instant as I understand it. It’s our alternative/back-up metabolism.
It may not be worth it, but it may. It depends on what you value in the end. And your risk profile! Despite everything you’ve shared with me to-date, I think there are areas where you may think you’re low-carbing but it may not be as low-carb as you’d expect. I could be wrong, but that’s just a gander.
The other side of this equation is risk. There is no guarantee that you will get any complications with an A1c of 8, just like there’s no guarantee of getting lung cancer by smoking your whole life. Are the chances super likely based on either of these circumstances? Yup. But it’s all about individual physiological make-up.
There is clear evidence that anything over 5.0 A1c increases risks of certain complications (!!!). But so does any blood pressure over 110/70, or any cholesterol over 170, etc., etc. Science gives us evidence in the rear-view mirror of other humans’ experiences. It gives us a guide. There is no saying that you will be on the high or low sensitivity of glucose toxicity. It’s a game of risk.
For context, my dad is Type 1 and has been since he was 28. He’s 82. He has done his best managing his condition, but he’s been hyper- and hypo-glycemic more times than I can count. He’s only THIS YEAR gotten a CGM. Did he suffer from a stroke? Yup. Can he feel things with his toes and fingers? Nope. But is he 82 and otherwise healthy and enjoying his life? Yup. So, do what you may with this anecdote.
He’s a tank. I’m not nearly as strong, so I am playing it safe. I do not plan on tempting fate. I do not want to lose my sight or the feelings in my fingers. That said, I’m only in year 1. Perhaps in year 15 I’ll make another determination.
I followed a low-carb diet for a few years, and had a marginal improvement in control, but nothing like the ultra tight control many report. I didn’t enjoy the diet for several reasons, so it wasn’t worth it for me to continue.
I definitely experienced the same issue with foods. It seems to be fairly common that people experience a rise in their carbohydrate sensitivity on a low-carb diet, so that they basically have to dose a lot more insulin for a much smaller amount of carbohydrates than they would on a high-carb diet. Also, on a low-carb diet, bolusing for protein for every meal becomes very important, while this can be largely ignored on a high-carb diet. And getting the bolus timing right for a low-carb diet (delayed absorption from protein and fat), which does not match today’s rapid insulins, can be extremely difficult.
All told, I found bolusing for meals on a low-carb diet more complex and time-consuming than bolusing for higher-carb meals. And it was definitely the case that I could not “cheat” at all, because my body wasn’t used to large amounts of carbs, so the times I would cheat, those carbs seemed to float around in my bloodstream and cause extremely high spikes regardless of how much insulin I took to cover them.
I can’t remember exactly, as I wasn’t on the lookout for it. But within several months, I would say. When I stopped eating low-carb, it took a similar period for my sensitivity to lessen and for carbs to not cause massive after-meal spikes. I spent some time in low-carb groups for people with T1, and it seemed to be a fairly common experience.
Thanks @Eric (and others), this was very useful. I ended up ‘going nuclear’, taking the Levemir dose completely down to zero for the full day (i.e. morning and evening) and just occasionally bolussing (at 1u per c. 20-30g of carb), and just carried on as normal afterwards. It seemed to just about work out. I still had to take on a decent amout of carbs, but that was the sheer exertion of the exercise.
Separately, over the last few weeks, I have found a combination of the five following changes has brought about a significant improvement in my day-to-day control:
i) speaking to helpful and informed people here on FUDiabetes
ii) having the miaomiao sensor convert my Libre to a CGM (giving me alarms during the night being the most useful improvment)
iii) using xDrip+, rather than Glimp (easier to use and the predicted fwd curve is v useful, once calibrated)
iv) switching to the more flexible Levemir from Tresiba
v) switching to NovoPen Echo with 0.5u increments, and a far more robust/reliable injection action.
My 30d ave BG is down to c 6.4 (from 7.3), s.d. down to 2.2 (from 3.4), and time in range (3.5-8) up to 72% (from 50%). These are still fairly wild numbers compared to those of some i see on here, but i know i just can’t match that. My question still remains: is it worth it? The non-linearity of the work required vs glycaemic stability function suggests that some point on the curve is optimal, and i still don’t know quite where that is (and given its subjectivity it’s impossible to know as it’s all a question of risk and personal preferences…but I’d like to know things like ‘20yr risk of myocardial infarction at 7.5 vs 6.5 A1C’ to be able to make a more informed decision)
Interestingly, last week i mananged to have a 24hr period staying 100% (as as near-as-makes-no-difference) in-range. I have never been able to acheive anything like that before. The cynic in me though highlighted two things:
i) the importance of luck in glyceamic control - or at least in mine. owing to the multitude of factors and their varying influence, every bolus injection is essentially an educated guess. given 10 injections per day, the law of large numbers says that while i’m going to get lots of them wrong, i’ll occasionally get one spectacularly wrong. that day, i just got lucky.
ii) the sheer variance in the ‘deltas’ of the various ‘input’ factors. for example, one day, my base case would be to need 1u per 10g (ignoring everything else), and another, holding everything else as constant as can be, it’ll be 20g. so on that particular day, things worked out. the next day was almost identical in sleep, exertion, stress and diet, yet i ended up taking 25% more bolus, and was in range for just 75%. really this is the same as point i) - i just got lucky.
dilution stuff seems like it would be too difficult, than just make sure you have a ridiculous amount of carbs with you, so that IF you need to treat a BG rise with a 1/2 unit you will be able to “eat away” most of it.)
What were those veggies, sir?? 
