I use to think there was a huge conspiracy with big pharma and they were never going to find a cure because all the drug/tech companies were making millions on just maintaining. And I like you have been doing this for a very long time and had really given up all hope of ever seeing things get better.
But my outlook has changed completely due to working with some great medical professional and in the early 80’s learning how to use blood testing to my advantage, and carb counting, and basal testing, and exercise, and to finally get clearance to get pregnant. My outlook took a huge swing to the positive! We have so much going for us now. There is so many different treatment options out there. There is no reason to not find something that will help make ones life easier not harder.
If MDI works for someone, great! And there are some many different options with MDI treatment plans. Different insulins, timing of insulin, strength of insulin, pens, syringes, inhaled. It’s endless. If pumping works for you, the types and options are like insulins. One can find one that will work for ones needs. It is a different type of work than injections but each has it’s issues one must handle. I find a pump gives me the flexibility I want and need. Just think, I don’t have to get up and eat, I don’t need to eat at all if I so desire, or if I have a test or surgery that I need to fast and blood sugars are falling, I can turn it down or turn it off and come in right on target.
Insulin is my miracle “drug”. It keeps me alive and happy and productive everyday. And in the 47 years using it, I have had only one issue and easily corrected by switching from beef to pork. I have no issues other than diabetes. But my diabetes does take a lot of work but it doesn’t control my life or effect my happiness. I don’t feel any of the things I use to help me maintain my diabetes as a bad thing. In fact, all of it has given me more knowledge, more control and more understanding to what is going on.
It was a big step to go from Lente to Ultralente, it was a huge step to go on a pump, it was a huge step to try the first CGM and another huge one to try CGM’s again. But wow, my management has never been better.
So I say, try something new, try something different. Just remember if we never tried anything different, we’d still be taking one shot a day and testing our urine, or even before those dark days, going on a starvation diet just to stay alive. So, live a little and try something different. You never know, you might find something that actually makes things easier. No more wild blood sugar swings. Best of luck figuring it out.
I just pulled my Pumping Insulin book by John Walsh and there is a whole chapter talking about basal rates and how to adjust and how to calculate it. It is a book that pumpers might want to have in the library along with many other great selections, but this one could be very helpful, starting over.
Using one of his formulas current weight x .24 (.53 for kg) will give an expected TDD (total daily dose). This was what we used to clean start me 2 1/2 years ago. This number is much higher than I am currently using but it gave us a starting point. These changes should be happening with input from your medical team.
in this same chapter there are charts to help fine tune whether you are having highs or lows. And I must say, one of the charts have me almost right on target. Again, not everyone fits but these formulas have some solid basis and are a good starting point.
So maybe get a copy of it or find it at the library and copy this chapter. Use the info in it when talking to your team about changes.
Please don’t give up here, you find the right basal rate and once you get it, the rest is easy to figure out. Good luck and keep us posted!
Everyone will see the impact of type 1 diabetes on their lives differently, but I can’t share your optimistic view. Nor do I see all that much improvement over my 52 years of the disease, since the new tools of managing it which were developed in the 1980s brought a colossal increase in the everyday burden of managing the disease and all the risks from strict control… Did the improvement in outcomes really balance the vast worsening of everyday lifestyle? If you add in the hideous social mistreatment of diabetics not just by the general society but also, and, indeed, especially by the medical profession, the picture is not positive.
If, before you had developed the disease, someone had offered you $10,000,000 to become a type 1 diabetic for the rest of your life, would you have taken it? What about $100,000,000? I don’t think any amount of money in compensation would have been adequate, even if the trade-off was to accept the most modern conditions of the disease, with the reward for a life of constant management challenges and the never-ending threat of potentially lethal hypoglycemia still being a massively increased risk of all sorts of physical deterioration plus a life expectancy shortened by 12 years on average.
I was told when diagnosed, as everyone else was, that a cure would certainly be available in 5 to 10 years, but now, more than 5 times 10 years later, the most optimistic estimates are that some significant improvement in treatment might possibly be available in 25 years. Are we supposed to be content with that, when there has been such astonishing progress in other areas of science during that same period of time, especially in space travel and computer technology, when we are still stuck with injected insulin, a technology from 1922? Insulin was initially hailed as a miracle drug, and yet now there is a diabetes cure agency called ‘Society for an Insulin-Free World,’ which shows what a disaster that way of treating diabetes has turned out to be.
As my poor GP said to my parents when I was first diagnose din 1966, “Don’t expect a rose garden. This is the worst thing that could have happened.” I don’t see that anything has changed that today.
Nope, only if you have a negative attitude. The day my golden retriever died was 1000x worse than the day I was diagnosed, as were many other days. This is just a nuisance and the technology that makes it easier to manage is incredible.
Thanks for reply…That is my concern too that if I lowered insulins a lot my bs would be real high all day…it is anyways b/c of the crazy crazy variations in what 1 unit can do/‘cover’,I think it has to directly to do with my ‘exercise’ , though what I do shouldn’t be considered ‘exercise’ (like 10-12 min slow walk, mayybe 2x/day?)
How did you realize you needed so much less insulin? Did you just lower the basal rates or the correction factor and Carb dose too? Are you now more active on a daily basis than you were? When do you start taking ‘less’ insulin, like how much exercise would you need to get? Are the settings you’re on now incorporating some exercise like just daily exercise, walking round a store, from car to building, around work etc?
I am at the point now where for some reason, 1 unit can bring my sugar down 100 + points!? It used to do about 30 in AM before breakfast (fasting). Now, few days ago, took 2 units (my sug was 375) and I just had a mini snickers (since chocolate doesn’t spike bs) and took 1 unit for that (say 10g), and 1 unit for bs, cuz I was errands, but still, hardly walking at all…and 2 hrs later my bs was 255 ish and still going down!..Now if I waited another 2 hrs to make it the total 4 hrs, it prob would’ve gone down more! Here’s what I’m thinking that is causing 1 unit to do so much more?:
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I had gotten some walking the day before (after not doing basically anything for months) maybe 15 mins total -including several flights of stairs which seemed intense) and the carry over of exercise effect?
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I had gotten some walking that day after the 2 u (maybe <10 mins?) so that might’ve increased sensitivity?
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I didn’t have much for lunch that day since my bs was so high, so the less food might’ve allowed it to work better?
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my basal rates are too high during day? Would a high basal rate add to a correction dose too?
Since I never know what to take for food (last night I took 2 u for 35 ish grams so 1u/18g?) and bs was exactly the same before bed…even though still ‘up’, the FACT that it was the same, does that mean the food dose was adequate?
The other night I took 2 units for about 25 grams (so 1u/12-ish grams?) and my bs was about 50 pts lower before bed…Does this mean food dose was adequate? I’m not including any corrections for now since this 1u/12 g brough bs down 50 pts…And I’m not adding corrections bc if I added say 2-3 units correction and it goes down 50 pts per unit, that would be 100-150 pts, ok that’s doable ?? BUT, IF it went down 100+ pts PER unit, that’s be 220-300 points?!! That’s wayy too much 
…
Don’t know how to get each the basal dose, food dose and correction dose even remotely consistent (with daily walking) with what it does before I use all 3 at once …
I hear every diabetic is ‘different’ and no two treatment options work the same for two different people…If you can find a plan that even SEMI works for you then that 's good and diabetes might not seem that bad or controlling or just a nuisance…But for others who have it really bad (like me) and NOTHING works and I have swings/bs drops from practically nothing, or just BEING in the cold, or just 10 minutes of walking, but yet if I do no exercise at all, even with high doses, bs stays really high? It is INCREDIBLY hard and does seem like the worse thing ever It has limited me and diminished my life to practically 0 and my doctors don’t know how to help…
I was like you where say in the 1st 10 yrs of diabetes for me) I was ‘ok’?? Still not doing good but I could manage a day and daily tasks much better and it didn’t seem so daunting…So it can go either way I’d say? Let’s just all hope for a cure in this lifetime?!
Thanks for your reply! I will look for that book! It seems like the only option is to give up…I can’t take much more of this life with diabetes…Even though my bs’s are still high, the drastic, sudden and extreme variations if drops , from boluses, cause me to have to keep it high…Like I said recently i ate 90 grams carbs, and had gotten maybe 15 mins exercise that day, including some stairs, and took 3 units total, my bs was the same 4 hrs later…Now thats 1u/30 grams that turned out to be ? If I did waht my pump was set at (1u/5g) AND a correction like my CDE would’ve told me to of 1u/25 pts >150, so taht’s 6 extra units? That’ would’ve been 24 units total?! I would’ve taken maybe 20, but with the EXPONENTIAL increase of even the correction factor sensitivity of like 1u/100pots now, and if I went in blindly and took that 20 unit dose thinking I’d need all that, I would NOT even be sitting here typing, and i get sick with dread thinking about it…Seems I might need much less insulin like you say, but I think that only works IF i include daily exercise…How much? who knows…
Here’s what happened last night…My BS at bed was 300,(10pm), I took no bolus and ate 15 grams and at 4am, it was 220, I thought that was a big drop? and still had 4 hrs to go so I ate a nut bar (about 10 grams?) and took no bolus and bs was 210 when waking at 8:30am) Now I know 210 is a bit high for am but I’m just looking at how much it’s dropping so I can go to bed at a better spot! It dropped 80-90 pts, WITH 2 snacks…so basal is too high?
I’d also want to take ‘enough’ basal where I can have one 15 g snack and take no bolus so that the basal and exercise I got can cover that…So tough 
You’re absolutely right, it’s relatively easy for me and this isn’t true for everyone.
First, please don’t give up! Diabetes can be one of the most frustrating things I have to deal with but I deal because when I do the best I can, I feel better mentally and physically.
And I will say again, that a visit with your medical team is in order. It sounds like you keep good records and have great examples of times when it clearly shows too much insulin on board. And I agree with you that that kind of drop with that many snacks means too much insulin. And every book and every medical professional and just about every person with diabetes will say, if you can nail your overnight basal, the rest of the day is so much easier. And it is also the easiest to test because most of us don’t get up and eat or exercise during the night.
Ideally you eat an early dinner. Test 5 hours after your last meal bolus. And than you must set that darn alarm clock for every few hours or just watch your CGM if you have one (best tool out there and makes basal testing so easy!) And if your blood sugar is going up or down 20-30 points, your basal rate is off. It is always suggested to make little changes and I know .025 sounds like nothing but with your sensitivity of 1:100 it will make a difference. My sensitivity is the same and that little bit makes a big difference. And I will also say that you need to be prepared to blood sugars that might be higher than you’d like while you get these basal rates set. The book I suggested is a great resource and even after 27 years of pumping I still pull it out.
I would also ask for a little more info so the many of us out there might be able to help with your experiences. Most times someone has had that issue and have found something that helped them.
So, how long have you had diabetes? How long using a pump and what kind? How many basal rates do you have in the 24 hour span? Do you have multiple basal profiles? How much and what kind of exercise? Do you low carb? How many carbs per meal? Do you use any other drugs to help with blood sugar control?
Correct basal rates will make everything else much easier. Keep at it. Keep asking questions. And make an appointment with your medical team and bring all you records and examples why you believe what you think is going on. Hang in there!
@Seydlitz, This is a tough disease there is no denying it, everything you said is true and it can happen, we all know it.
We are here to support each other, to educate and encourage each other. I find a negative attitude to be self defeating, it steals your hope and if you are not careful the negativity fulfills itself. I want better than this for myself and for anyone touched by this scourge.
The example you have given should be something for which we have compassion. It should not be portrayed as something yet to come, no one knows the future, lets not ruin it before it gets here.
Thanks for the reply! Don’t know if you saw I also posted a (longer) post to you about a day ago with other thoughts ? I’ll
try to get back to the most recent post this weekend (Sry for delay), but appreciate your posts! Sally 7 and all of you!
Hi again, thanks again for reply…Will try to answer your q’s soon, not feeling well, think it might be dka or gastroparesis And tom. is my bday (30, ugh!) So will try to get back next week! Don’t know if my long post a few up answered any of your q’s? But thanks for all the info! It’s appreciated , when dr’s don’t take more than 10 mins to talk to you then don’t listen too…My dr. would say I’m not taking nearly enough insulin b/c my sugars are high all the time but I almost have to keep them high b/c of the drops I can get…so a result? High a1c…it’s a vicious cycle Have a good weekend!
Happy Birthday!
Enjoy the day! And take care of yourself. Don’t worry about getting back to us, we are here whenever you’re ready. Sure hope you can nip a possible DKA before it gets out of hand!
Hi there, sorry for delay…Will answer some of your q’s! …Had an appt. w.my dr. yesterday…still not doing better, becasue i’ve been trying to be more active (even just slow walking daily for a bit, which is more than I’ve done in a while, tough to get out here in New England and my bs can plummet in cold)…so w/the extreme drops I can get even with little exercise, I 've been lowering my doses when exercising, and even though my bs still are high, my experiments doing this told me something? One time I walked 20 mins, ate 60 carbs and took 3 units total as a guess…(normally would take 10 units for that carbs, then a correction)…and 3 hrs later, my bs was exactly the same! Now even though bs was up, if it had been lower to begin with, and then it proceeded to stay same, doesn’t that mean THAT carb dose was right? CDE said if bs’s are + or - 40 ish pts from starting pt 3-4 hrs later then food dose was right? …SO, that means 1u/20 g was correct (if I got 20 mins walk)? …Another day I did about 15 mins slow walk and took 2u for 30 g’s and bs was 50 pts lower 3 hrs later…so 1u/15 g’s worked (w/15 min stroll)? I’m just trying to find a carb dose that’ll work b/c it seems it depends almost directly on how much walking I do? Now this doesnt happen all the time, but say these times I used 1u/6-7 g’s, then my bs would’ve been MUCH lower faster which means that carb ratio for that activity wouldn’t have been right? So if I ALSO took a correction dose ON TOP of the 1u/6-7g like dr. would’ve said, (don’t know how much to take as 1u can drop bs’s 45-120 pts? and they’d say use the 40 pts one, but exercise can have an exponential effect it seems so would prob work towards the 120 factor, so if I took 3 units extra thinking it’d only drop 120 pts but it REALLY would drop 300+pts, that’s a HUGE difference ) I’d had PLUMMETING/dropping sugars so fast prob of 50 points/MINUTE, (as I’ve had in past), and so this would be VERY dangerous to ‘catch’ and treat with this ‘rate of change’, and the cgm beeps at 3 pts/min drop! …So since these EXTREMES can happen to me, I’m trying to get my bs’s even just ‘better’, like upper 100’s, lower 200’s, SAFELY and steadily without these awful swings…BUT THEN as the joy of diabetes goes, nothing ever works the same way twice, when I try to calculate what to take and do, it lately hasn’t been nearly enough…and I’m afraid of taking much more like they want, then having these extremes happen again with just barely walking since now I’ll have so much more IOB …NO MATTER WAHT I do doesn’t work and I’m very scared it won’t work out right or if it does, will be too much insulin too and could be catastrophic…
I told all this to my dr’ yesterday and she was fairly dismissive of these ‘events’ saying if it doesn’t happen all the time she doesn’t know what to say b/c my bs’s are always high…But I think if I DID try to take a lot more AND do even ‘daily living’ walking, like 20 minutes, then this WOULD happen all the time…and since it can be SOO DRASTIC, I don’t even want to try it, unless in like a hospital setting :/…So I’m damned it I don’t exercise at all, then bs’s stay high maybe from the fat I eat, and damned if I do exercise a bit cuz then I don’t know how much to take without it being too much or little…I don’t even want to get out of bed anymore and it has taken over my life, how bad I’m doing…
I also then limit the carbs I eat per meal/snack (< or= to 30 g’s)b/c I can never get doses right and then if I eat a lot of carbs,(like they want me to, have been trying to eat 45-50carbs and bs’s are way too high now, in 300’s a lot :/) and don’t get dose right, bs’s will be prob 400+! So this REALLY limits my diet …and living in general…How many carbs day/meal is ok if you want to be generally 'low carb"?
Whew sorry for that! But it wasn’t a good appt. …Now to answer your q’s, Thank you so much for your replies and questions! …I’ve had diabetes 20 yrs too long now, got it at 10…Been on tandem pump a little over a yr now, first time pump user…I have 3 basal rates, one all day until midnight (1.1u/hr) , then 2 overnight, like.7, and .75…I used to be more active but I try to get 15 mins walk in at a time…No other drugs at moment…skeptical of metformin which they wanted me to try yrs ago, which I think i did but made me sick? …So my dr is just looking at what bs’s ARE , not what they are DOING with diff things, which is what I’m more looking at b/c that’s safer…I have not been able to hold a job b/c of my diabetes and not sure what to do cuz you also need $$ to live eh?! Just got thru a tough New England winter where I had to stay inside EVERY DAY becasue noticed cold can plummet my sugars very fast too even in like 3 mins walking outside…I can’t live like this, becasue I always have to keep it high with these extremes in temp and insulin/activity swings…but then when I try to get it down, nothing works same way twice…Thinking I might have to leave New England for the winter but don’t know how?! So sorry for this novel but my team doesn’t know how to help my situation it seems? I will try their insulin increase to see if ithelps.
I used to get crashing lows all the time even from one unit of Humalog (I’m on MDI not pump) so I often ended up not taking enough insulin because of the too high risk IMO of lows but when I switched to Afrezza that problem went away completely after a few weeks. In addition this does not seem to be the case for only me. There are quite a few users who say they no longer go very low and this is probably because Afrezza doesn’t stay in your system for very long like Humalog does.
The lowest I’ve gone since starting Afrezza is 59 and that’s only happened a couple of times so you may want to consider a insulin regimen change if you still can’t figure this out. Maybe your insulin duration is set incorrectly for you. I know that when I was on Humalog that it lasted way longer in my system than it was supposed to so I couldn’t take any before bed even if I needed a correction.
How much is considered low carb varies from person to person. I try to stay below 30 grams per day excluding any fiber but there are many people who eat more than 100 grams per day and still call that low carb. Did these problems start when you started pumping or did you start pumping in order to try and fix these problems?
I’m not sure why eating more carbs would help, it would just mean you have to take more insulin which would cause lows. Have you tried going extremely low carb, such as eating ~10g/meal or less? I’ve been trying it for the past week; I don’t know if it’s sustainable in the long term, but it really does stabilize things. I’ve had very few lows since I’m taking such small amounts of insulin, and they can usually be treated with just 1-2 glucose tablets since they’re so mild. Your insulin requirements would likely drop significantly if you dramatically reduce your carbs, which would make things easier for you. Maybe even just try breakfast or 1 meal a day without carbs? Just remember you might need to extend boluses for protein that your body will start converting into glucose in the absence of carbs!