Is it me, or am i managing this completely wrong?

Thank you again @bkh for this detailed reply. It has changed the way i am looking at daily movements… but presenting challenges. If we discount a pump for now (which i am really not enamoured by) this leaves diluting, which my diabetic nurse told me today was impossible. Her response to my enquiry was as follows (i think she may have misunderstood my point about diluting, so i’ve asked for clarification)

“Regarding 0.5unit pens for NovoRapid it is call NovoPen Echo it takes the NovoRapid 3mL cartridges. This would allow you to give half units. Regarding vial and syringes the insulin syringes come in either 100units and 50units but the increments are single units so this would not help you. The only way of doing very small adjustments is by using an insulin pump which will deliver 0.025 or 0.05unit increments dependent on the pump.”

Perhaps 0.5u pens would be half-way to a solution, and certainly an improvement.
For example, see the attached screenshot of last night’s escapade.

On going to bed around midnight, i was awake for a while, watching levels, and found myself rising fairly sharply by 1am (close to 10.0), so i injected 1u, and fell asleep. By 3am, i was awoken by the alarm telling me i was down at 3.5. I took 10g of carb via an orange juice drink (which would shoot me through the roof if i was low for >1hr, but given this was only a few minutes, it felt it appropriate). i then went back to sleep, and was awoken again at 7am, down at <3.5 again. Some times i need 3-4g for a particular low, other times, 25g.

In summary: what is making managing things so difficult is the inconsistency of my reactions to insulin and carbs. One day, 1u will take me down 2-3mmol, another day (like last night) it might be 6-7mmol.
I’m not sure how i can possible manage things effectively, 0.5u pens or not, with such wild swings in sensitivities. Unless i’m missing something here? Are some hypos and some hypers indentifiably different, each needing a different treatment approach? i know sleep, stress, exercise etc all play a role, but i think they’re fairly consistent at the moment, aside the odd day of rest (not happened for a while)

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Novorapid is considered a rapid-acting analog in the chart below. This chart is from a review by Gary Sheiner: Review: Afrezza Rapid Acting Insulin | Integrated Diabetes Services.

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That’s already a big difference. Congrats!

Please post about how it works out for you. I haven’t used Levemir before. I think I might need an additional dose/day in order to use it. I chose Lantus rather than Levemir mostly because I’d used it before. I wasn’t up for trying another new insulin at that time.

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The nurse is definitely wrong about not being able to dilute. I don’ t know about Novolog, but we definitely had a diluent for Humalog. I think the thing is, almost all adults would not need this in the normal course of their diabetes management, so she might not know about it.

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Ugh and she’s also wrong about the half-units; we had syringes that had half-units for our son at diagnosis. We still do, although we rarely use them as we have a pen now.

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The problem with diabetes medical professionals - they know so much that is not true!

This is the one you want! 1/2 unit markings, 30 units, and 8mm needle.

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https://www.amazon.com/BD-Ultrafine-Insulin-Needle-1-Markings/dp/B07C96LS75

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Really fast. It might be worthwhile to search for Afrezza on this forum: when it was first widely available in the US there were some good and detailed explanations of how well it works and useful ways to use it to good advantage.

I prefer 6mm syringe length to 8mm, but I could see a real benefit to 8mm if I wanted to take insulin IM rather than SQ more often than I do now. (IM=intra-muscular SQ=sub-cutaneous. SQ is normally used for insulin, IM is a slightly advanced technique that can give a quicker response.)

And I re-iterate, you can take a smaller dose than the markings on the syringe by drawing the plunger to a point in-between the marks. 1/4u is perfectly feasible in my experience.

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I also use Tresiba and Novolog. The Inpen (made by Companion Medical) can be used with Novolog cartridges (not vials), and has HALF UNITS! In the past, I have used the “children’s” pens in order to have the 0.5 option. I also don’t have as much time in a “steady state” as I’d like, but I do find that the less carbs I eat, the less excursions/“rollercoastering” I have. But you already mentioned that you are on a low carb diet, so that info isn’t helpful to you. I do find that WALKING (vs. bursts of intense exercise) gives me more of a “margin of error” in terms of my b.s. I don’t fluctuate as much, and seem to be less reactive to carbs. Boy do I wish all of these factors were easier to make sense of as a whole.

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Agreed - and thank you - but it took a lot of time and effort, along with a few lows during the day. Manageable when working at home, but i imagine far trickier back in the office or when out and about. The question i need to answer for myself (which, of course, isn’t really possible to answer ex ante) is : is it worth it ? of course it’s better to have a lower ave BG, A1C and s.d., but how much better? These things aren’t linear. Improving A1C from 7 to 6 (i would imagine) has a far greater effect than lowering from 6 to 5… and is probably a bit easier too. So it gets harder work with decreasing incremental improvement… question is where one decides to draw the line.

I shall do.

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She seems to be aware but it doesn’t seem to be standard practice here in the UK. She is concerned about contamination and longevity/efficiacy of the diluted insulin. I guess it’s also a little cumbersome to be conducting this sort of work in a germ-ridden office/public place. I see her point. Her comments below, for info.

"Diluting insulin is not something that we would recommend. When insulin is put into vials, cartridges or pens it is done under serial conditions. It would be difficult if not in possible to recreate a safe way of doing this at home. Insulin used hospital insulin infusion is diluted but can only be used in this form for a very limited time period then it needs to be discarded. "

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Thanks. Looks like it’s not recommended over here…but i wouldn’t mind knowing the facts. Incidentally, with an 8mm needle, one surely has to be very careful not to inject into muscle? Particularly for someone as lean as me (5’10, 62kg) Why are they so long? I recently switched from 5mm to 4mm needles for my pens for this very reason. (I would occasionally hit a muscle causing a fast and deep hypo)

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Afrezza (despite it not being a new product) is seemingly a complete non-runner here in the UK, unfortunately.

So in the absence of Afrezza, perhaps IM injection is a potental solution for me. As i have mentioned previously, it’s the latency of the reaction to insulin (and carbs) that makes management feel difficult. You only need a short latency in any type of mangement exercise (including converstions… think what a 2-sec delay on a phone call) to cause instant chaos and confusion. So, to my mind, and unless i’m missing something, fast reactions are key to good management.

Is there an ‘idiots guide’ to IM injection (i’m presuming this is only for boluses) somewhere i can read through. E.g. which muscles? relax or flex them when injecting? how deep? (perhaps my 4mm needles won’t work too well) what does it do to the reaction time, precisely? is the effect deepened, or simply speeded up? does the action end quicker?

Yes, it seems the children’s pen (NovoPen Echo) is the 0.5u pen that has been recommended to me. Not sure exactly what makes it a children’s pen? Do children typically take lower doses and therefore benefit most from 0.5u increments? i’m not sure why all pens don’t offer this, as it’s not obvious to me that the ‘price’ of such increments is very high.
Anyway, feels like that’s the one for me to focus on.

Yes, children typically take lower doses, but as an adult, I have a Novopen Echo too.

I like them because they allow me to inject in the muscle or fat, just depending on the location. Doing an IM injection is faster, so these syringes give me the option either way.

Are you able to get them from Amazon in the UK?

There is a big disconnect between medical advice and practice.

I have used diluted insulin in a number of ways. I have diluted pens, I have diluted vials, and I have diluted my pump.

Insulin is bulletproof. I don’t think you could actually damage the insulin with the diluent if you were trying to.

You can buy sterile vials (at least you can get them in the U.S. from Amazon). You inject a certain number of units of the diluent into the vial, and a certain number of units of insulin. And then you have a diluted vial. It is really not too complicated! Not sure why your medical lady is so troubled by it!

I think what is more important than diluting insulin is just breaking free from the horror show of people telling you what can’t be done. There are people here who have done it. Not just diluting insulin, but all kinds of things.

Like the fact that insulin lasts longer than 28 days after opening, like it says on the vial! Or the fact that it lasts without refrigeration. And that it lasts years past the expiration date. All kinds of things.

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One point that could be improved if you are worried is to use a sterile syringe to do the moving of insulin. Then it would be 100% bulletproof unless you did something crazy.

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So, the way you do it is basically you get an extra empty sterilized vial, draw some insulin up from your primary vial, inject into the new vial, draw some diluent up from its primary vial, and inject it into the other bottle. She’s right that it’s less stable; diluted insulin for us lasted about 7 days, rather than 28, unrefrigerated. However, we were diluting 10:1 which tends to be more unstable, and also if you put 10 units of insulin in a vial, it’s very possible it wouldn’t last more than 7 days anyways.

Our pediatric endocrinologist office, one of the best in the country is the one who described this process, and a compounding pharmacy also performed this function. Her concerns about sterility are misguided.

My impression is that the primary risk of unstable insulin is that it would stop working, not that it would become horribly putrid or contaminated in some way that renders it unsafe. So worst case, you use a diluted solution of 0.25 units, which was meant to bump you down slightly … and it doesn’t bump you down. Given your use case, I think it’s very likely a low low risk activity.

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I was diagnosed 5 years ago at age 55. I feel like I’ve tried the gambit as far as insulin (Levemir, Tresiba, Afrezza), delivery methods (Pens, syringes, pump), regimes (using my CGM to aid sugar surfing), etc. to find what worked for me and also what gives me the right balance of involvement vs. BG control. Much of my experimenting stemmed from my expectation that I could have better control.

It’s taken me five years to get my A1C under 6.0 (last 2 were 5.7 and 5.5). A year ago I started Looping with Omnipod and Dexcom G6 and it’s a good fit for me. I eat “lower” carb (def not strict Low carb. For me, Looping required time to learn and initially set up but now it’s more intuitive, less time consuming.

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Not sure if this has been mentioned or not (there are a lot of replies!), but I do wonder what you mean by low-carb-within-reason?

I ask because I see with myself a direct correlation between diet and time-in-range.

A few thoughts for consideration:

  • Completely agree that Afrezza seems to be a real underdog in insulin management. The quickness is a killer app (as is no injections for us needlephobes!).

  • A “closed loop” CGM/Pump system would likely automate much of what you need to do manually now. In a few years, we should see this become more mainstream and accessible via pumps that do not require “cable management.”

  • A truly low-carb diet (under 30 net carbs/day) may transform (i.e., significantly reduce) the amount of insulin you require, reducing the opportunities for high peaks and deep valleys. It may be worth a shot. I do not believe you actually “need” any more carbs than this to live or even to exercise. You just need to reduce insulin in correlation with the reduction of carbs. Less exogenous insulin = less likelihood of lows.

  • Sugar Surfing is another approach, but it requires a lot more active management than the alternatives. It all depends on what your personal desires are! I’ve been able to figure out a low-carb diet that makes me feel like I’m gaining more than losing at this point. But for others, eliminating bread and pasta might as well be a death sentence. I understand all POVs on this, so to each their own!

Happy to discuss/deep-dive on any of these issues if it helps!
Cheers.

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Hi john first of all i think you are trying to hard to achieve levels of control that you are not going to get without being on a pump , till i had a pump about 8 years ago after be diabetic for 31 years i to had quite good control but at a cost lots of highs and lows just like you,i do not know your age but going by your activity you are fit ,with your active life you would be much better with a pump and have much better control that you cannot achieve with insulin pens particular your morning numbers ,with a pump you can adjust your basal before you run or bike ride , the figures that you see other diabetics achieve are very good but you donot know how they get them example how long they have been a diabetic how old what equipment they have and how active they are and most of all how hard they work at there control ,being diabetic is a very long haul you have to work at it 24 -7 ,my HB1AC over the last 6 years have been between 6.4 and 5.8 but i work hard at it ,i weigh every carb i eat and work out my bolus , do not worry about others control just work on your own and you will get there in time it has taken me 33 years and i am still learning , i hope i have been help full any way good luck . ps get a pump if you can.

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@john_coburg I was 5 when I was diagnosed with T1D, that was 56 years ago. For the vast majority of that time I injected, and have used a wide variety of insulins. Like you, I had no interest in a pump until 5 years ago. Over the past 5 years I’ve improved my glycemic control to the point where I now regularly have non-diabetic numbers.

A number of long-term diabetic complications made me realize that the 6.0-7.0 A1C numbers I’d always had weren’t enough to stave off endothelial cell damage. In order to get another 10 or 20 years out of this body I needed to halt and perhaps reverse the damage the first 6 decades have done.

Until I started hanging out at forums (this and the other one) I had no idea others were flatlining their CGM traces and running A1C’s near 5. I listened, read, and I experimented. The results are remarkable, and once you get into the swing of it, easily repeatable.

CGM July 23

That said, without a CGM and a pump, it’s near impossible to achieve normal or better than normal blood glucose and time in range numbers.

My target blood sugar is 4.6 mmol/L (83 mg/dL), and I try to keep my Standard Deviation close to 1.0 mmol/L (18 mg/dL). The key to fine tuning this level of control is the ability to micro-dose (0.1 Units is often enough to attenuate a gently rise blood sugar). Very few people can do that with a lo-dose syringe or pen.

BTW, I use an old Medtronic pump, and I’m not Looping. The years have taught me well, and I don’t consider my control to be micromanagement.

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