I am 32 and was just dx with T1 last week. The endo I saw was great, got me started on insulin right away. At the moment, I am just on humulog, but I go back in about a week to see if I need a basal insulin as well. Done a ton of online surfing these past few days and know quite a bit about diabetes, as my father was a T1 as well (passed away from complications when I was a kid). So, some of my questions:
Does everyone with T1 ultimately require a basal insulin? Right now, I’m doing 4-6 shots of humulog per day. I do so many because I’m very active and eat frequent, small meals. My endo didn’t see an issue with this so long as I was able to keep up with the schedule (thus far, it doesn’t bother me). My fasting blood sugar in the morning is under 140 (generally between 100 and 130). I would like to stay away from basal insulin if at all possible, as I am very active and scared of going low. For how long have adult-onset type 1 folks been able to avoid having to take a long-acting insulin?
It seems like the pump is quite popular among T1s. My endo mentioned it and said that once I’m fully dependent on insulin, it is something I should consider. That said, the injections really don’t bother me and, for now, they are working great. I really dislike the idea of having a pump attached to me at all times, not to mention having to carry around all the supplies that go with it. I’m extremely active and feel like it would just be in the way. Are there people with T1 still managing with injections? The pens are just so convenient!
I was interested in a CGM until I read about all the inaccuracies. Finger poking doesn’t bother me too much. Are the CGMs really worth it? I have good insurance, but don’t know if it’s worth the fight. I’m testing 8-10 times a day at the moment.
I am a very active person, mostly doing a lot of distance cycling and running marathons. I want to be able to continue to do these things. What should I know about physical activity and diabetes? Obviously, I know that exercise lowers the blood sugar. Is this really just a trial and error sort of thing? Are there any educators out there who can help me understand my insulin/food requirements when I exercise, or do I just have to figure this out myself?
How long can I expect to still produce my own insulin? At the moment, my insulin levels are less than 2 and my endo said I could probably still be producing insulin for another year or possibly even several years. What has been everyone’s experience with this?
Someone recommended trying the supplement niacinimide to help preserve what beta cells I do have left. I realize I can’t reverse the damage that has already been done and that I will always need a fast acting insulin for meals. But has anyone tried this? Again, the longer I can avoid having to take a long-acting insulin, the better.
Diet - I am a good eater, but have been a vegetarian for most of my life. I don’t plan on changing that. I went low-carb veggie a few months back when abnormalities with my blood sugar were first identified. I am not overweight. Any recommendations for how to maintain a vegetarian diet (one that is high in veggies and protein)?
Any other advice? While I’m overwhelmed, I am very fortunate to be very healthy otherwise and have great medical insurance. I realize that there’s far worse things that can happen. Just trying to take this all in stride and learn what I can.
doing lots of shots is sort of like a pump, except maybe less frequently? I like the ‘buzz’ from taking only fast acting insulin in a pump a lot better than the long-term I used, although I used N instead of Lantus/ Levemir. The other advantage to this is that it’s easier to lower your dosing for distance cardio activities. You would probably eventually run into issues @ night though. I agree that lows, particularly freaky ones, are intimidating but by testing regularly, you can beat them up.
I love my pump and am active. I don’t bring any supplies with me most of the time. To me, it was like running in proper running shoes (Saucony Kinvaras for me…) vs. Chuck Taylors. I felt better immediately.
Same thing w/ CGM, I think that the inaccuracy gets a lot of press, sort of the squeaky wheel getting the oil, but it is extremely useful. Particularly for nighttime. I also like it a lot for running and cycling as it’s easier to keep an eye on things. Before I had the CGM, I had a few hair-raising suprise readings. I am usually trying to maintain a running schedule around the crappy midwest weather and it is a huge bummer for me when my BG is messed up on an ideal running day. Not that I won’t still go running but still, bringing extra carbs or whatever can be tedious too. The CGM is very useful.
Yes. I think there may be some utility to getting used to knowing your BG for working out? There was an article in Cycling magazine about Team T1 using CGMs and noting their carb intake requirements very precisely to avoid bonking/ hitting walls? I think that w/ BG testing and/ or CGMs this is useful to know and may even be useful for people who don’t have diabetes, except they can’t get a CGM. Congratulations! I have only run 1/2 marathons to date but signed up for Chicago in October. I hit the wall once when I started running farther and it was not very enjoyable.
Maybe 6-18 months? I think there may be some trickling out for years later but I don’t think it makes a huge impact.
I have no idea.
I would just keep eating what you are eating, as long as you count carbs and test a lot, you should be cool?
Type 1 is the destruction of the beta cells producing insulin. It takes bit of time for that total destruction to occur. (It happens much more quickly in children and babies). So, your endo may have determined that you may still have sufficient insulin production not to necessitate basal at the moment. Ultimately, you will need it.
The pump is a choice. Some people prefer injections and some prefer the pump. Some find greater control with the pump but some people get great control with injections. For me, I did MDI for a year before going on the pump. I chose the pump for convenience and discretion more than any other reason.
I have not used a CGM yet - but am not considering it. So, I can’t offer much of an opinion on that one.
Exercise affects BG in different ways. It can drop BG but there are also situations where it can elevate BG. Others will experience low BG but hours after the exercise. You’re best bet is to track your BG. Test before and after exercise and then a couple of hours after. Log it and see if you can see how your own body is responding to it. For example, I’ve learned if I do cardio circuits or swim lots of laps I’ll see a big drop but not right away - it can happen an hour or so after. But lighter cardio or strength training may not affect it at all or the effect will materialize right on the heels of exercise.
The duration of the insulin is tough one. It’s anyone’s guess. I was first misdiagnosed as a T2 (wasn’t even tested for T1) and then within 2 months bottomed out – at proper diagnosis I was at 0.2 – virtually nothing. Everyone is different. But I assume your endo will keep an eye on your production. You’ll also be able tot tell by your ability to control BG with bolus alone. When you are out of insulin, you will absolutely need basal.
This one has me stumped. But I bet someone here will have an answer for you.
There are a number of vegetarian groups on the site - I suggest you check them out.
I promise you it will get easier. It’s a tough diagnosis and at first it’s a lot of information. It’s a complex disease for sure. It’s so good you found TuDiabetes this quickly. You’ll find a lot of supporters here and a lot of people with great information.
I love my Sauconys! They are the only running shoes I have ever liked. Run 13 marathons in Sauconys and they have never done my wrong
Thanks for all the feedback. I will keep an open mind re: the pump. For now it looks like it’s not necessary given my relatively low dosage of insulin (less than 20 units per day of just Humalog).
I will ask about the CGM. Given my hectic schedule and level of physical activity, I think it could offer some benefit. Don’t know if insurance will cover it, but so long as the doc is willing to give me an Rx for one, I could pay out of pocket for it I suppose.
The only other thing I’m not sure about would be that I was T1 for like 26 years before I got a CGM and was fairly sensitive to wild BG swings (I have the whole saga on “my page”…) which may have made it easier for me to perceive the way in which the occasional inaccuracies of the CGM were related to things like calibrating when you are flat and have not eaten 75 G of carbs, etc. Once it’s locked in, it works ok for that but day one I find I can get better results by being a bit more “chill” in my approach? This probably mirrors how being sort of conservative is useful in general but particularly with a CGM. They are not cheap though, as far as out of pocket?
If you are still producing insulin, you are at a very critical time where you can actually save some of your islet cells. If you eat a diet consisting of meat, fat, and non-starchy veggies (less than 30g/day), you will have the greatest start to your type 1 diabetes. You may be able to avoid a lifetime of injections. I’ve been on them for 20 years and wish I would have known then what I know now about food and insulin. Check out Dr. Bernstein’s book The Diabetes Solution asap. I also highly recommend Robb Wolf’s book called the Paleo Solution. The paleo diet does allow fruit, but I exclude it from my diet being type 1. If you want to get the best control possible and avoid the side affects your father had, it’s all in the power of your diet. You can find great recipes as well on my blog http://www.paleogirls.com. Best of luck to you!
Hi and welcome to TuD. I understand your overwhelm, but you seem to have a good attitude and approach to dealing with it all. Do take care of yourself as it is pretty stressful and can sneak up on you.
To respond to some of your questions: Yes, you will need a basal. The basal/bolus regimen is the way of replicating what a healthy pancreas does normally. You say your fasting is under 140, but ideally you want it under 100 as much as possible. I understand your fear of lows, we all have it, but lows are much more likely from fast acting than long acting insulin. The key with basal is to start low and increase gradually. If you don’t use basal you will end up using more bolus to cover your long acting needs which is not the best way to do it.
The pump is not for everyone, but many people with active lives do eventually choose it and are very glad they did. But it is a learning curve in its own right, and I wouldn’t recommend it until you are already adjusted to diabetes, counting carbs, etc.
Finally, I’m a vegetarian as well. What I’ve found is to stay one and to eat the type of foods and do the creative cooking I enjoy, I can’t do low carb. But I do what I call moderate/low, under 100 carbs a day and that works for me.
I think it’s possible to be vegetarian and low carb, but only if you are willing to eat a higher fat diet. Vegan is much harder. But if you eat eggs, cheese, nuts, etc. you can eat really well and still do a pretty low carb diet. I like to bake with almond flour, and eat hearty salads with veggies, nuts, and a very small amount of fruit. I sprout a lot of my food, and find that sprouted lentils don’t raise my blood sugar nearly as much as cooked. I sprout sunflower seeds for greens, and also kale and cabbage for micro-greens.
I’ve had LADA for 4 years now and have had very little change in my insulin needs. My fasting BG has crept up from normal (80) to around 100. I just take fast acting insulin for meals and am not yet using a basal insulin as it did give me lows when I was more active.
Good luck.
Thanks everyone for the replies and guidance. One question about the pump - am I even eligible for that at this time? Right now, I am still producing my own insulin, albeit not a whole lot. But here’s the deal - weI am considering getting pregnant this fall and the endo said that my insulin requirements will undoutedly go up during that time. She suspected that I will definitely need a basal insulin once pregnant to keep my numbers “tighter.” That said, from what I’m reading online, the pump does offer better control when used properly. I just don’t want to be learning how to use it right when I find out I’m pregnant.
How does one go about getting a pump? Would my situation (progressive adult-onset type 1 who wants to get pregnant in the near future) warrant me getting a pump now so that I’m ahead of the learning curve if/when I do get pregnant this fall? How long does the approval process for a pump take? Do insurance companies look at lab results (i.e., whether someone is still producing their own insulin) before deciding whether to approve someone?
I had sort of a rough night at a friend’s house last night over dinner and began wondering if the pump was a potentially good option even though I’m still making insulin and on a fairly low dose of humalog at the moment. I gave myself 3 units before dinner, but must have eaten more than I planned because I was over 200 close to 2 hours after dinner. Gave myself a correciton dose of 2 units and then plummeted down to 62. Didn’t stay there long though, and was back up to 90 within an hour or so. I just felt really “off.” Granted, I did have a glass of wine. But is this something that a pump would help me avoid?
To answer the last part first, about your going over 200: Do you know your I:C ratio so that you know the correct dose for the carbs that you eat? Also do you know your ISF, the number that 1 unit drops your blood sugar when you correct? Those things take time and trial and error to calculate correctly (and they might change a fair amount in the early days). The pump would not necessarily help you avoid mealtime highs. The calculating of bolus is what works. The only difference with the pump is that it allows you to give much smaller fractions of doses to precisely match your carbs.
As for getting the pump, it really seems to vary with your doctor, your insurance and your pump rep. I had a really easy time. I called Animas and they called and got approval from the insurance company in a matter of days. The animas rep then called my doctor and took the form for him to sign. The only thing they asked of me is I get a current A1C for the form. I did and my A1C was 6.4 so pretty decent. Some people on the other hand have gotten runarounds from their doctor because either their A1C was too high and they felt they needed to learn proper control first, or it was too good and they didn’t feel they “needed it”. So the answer to “how hard” varies and the answers to “how long” that I’ve heard vary from a couple weeks to months even up to a year.
As I said above, I pretty strongly believe that you need to get stable on a basal/bolus regimen and get experience carb counting and using your ISF before you are ready for a pump. Also, I would never want to combine learning basic type 1 management with learning the pump. I found each fairly overwhelming on their own.
Thanks for the advice. I go back to the doc next week so this is all something that I will make sure to discuss with her. Right now, I’m doing a 1:15 I:C ratio. Most of the time, it works fairly well, likely a result of how physically active I am. However, the doc assured me that this will change over time. I don’t know what my insulin sensitivity factor is, but I was told that I seem to be very “sensitive” to insulin (whatever that means) because a little does a pretty significant job of getting my blood sugar down. Is that a good thing? The CDE I met with said it was likely because I am very active and have a significant amount of muscle (compared to body fat). She said the more muscular you are, the less insulin you generally need. I’ve also been following a fairly rigid low carb diet, trying to keep my carb intake less than 90g per day (some days I achieve this, some days I’m a bit over 100). No easy feat when you’re a vegetarian!
I’ve spent some time looking at pumps online and I think the Revel is the one I’m most interested in. I am fortunate to have good insurance (federal BCBS) and can pay out of pocket for things if necessary. I will just have to see if my doc is willing to sign the approval form. If I wasn’t thinking of getting preggers in the very near future, I probably wouldn’t explore this option, but I feel like it will just give me better overall control, something that is clearly really important if you’re diabetic and pregnant.
Willkommen to TuDiabetes,
here is my opinion on your questions:
you will need basal insulin after your honeymoon phase - there is no alternate. I would also like to add that the basal is the guarantee for good control. Not now of course - but later it will. Also the choice of the brand of basal insulin will greatly impact the level of control that is achievable. I have great doubts about Lantus which will not cover 24 hours for most users. I have also doubts about using only one shot of Levemir. Two shots of Levemir per day is my recommendation for good control.
a pump is just a tool. I can assure you that there is no guarantee that the pump will lead to good control - if the level of education is the same. It is the knowledge and the will to utilize that knowledge that will make the difference. A CGMS will have a much greater impact on the quality of your control. If your insurance is just willing to cover pump or CGMS then go for the CGMS.
the more stable your numbers the more reliable the CGMS. Every T1 needs to learn about his individual reactions to different foods - absorption times and behavior. With a CGMS this learning process will be much faster.
consider that insulin is active for longer periods of time (around 3 hours for analog insulins). If you have insulin on board every physical activity will amplify the effects of active insulin. To prevent lows you could eat some carbs as a preparation. You could also reduce the dosage of the previous injection - if the time lap is not that huge between injection and exercise. Some people will have a very different reaction. Their liver will dump glucose as a reaction to physical activity. This subgroup will see higher numbers with exercise and the treatment of this spike with insulin is not very easy to handle.
the length of the honeymoon phase depends on the autoimmune reaction against the beta cells. With your age you are actually a late developing T1 (in my view). Perhaps this is an indicator that your honeymoon phase will be longer. On the other hand the reaction has already killed that many beta cells that you are insulin dependend right now. I am pressing my thumbs and think it will last for 1 1/2 year.
To my knowledge all trials to prolong the honeymoon phase with medication have failed. Even a period of immune supression will not change that the immune systems is programmed to attac the beta cells. Please ask your endo about his opinion on niacinimide. It makes no sense to risk your health for some months of honeymooning.
with your high level of physical activity you should learn to handle carbs not to avoid them. With handle I mean appropriate Insulin treatment, I:C ratios, injection to meal times etc.
Keep a digital log about your numbers This way you will see trends and you will detect early when the honeymoon phase is about to end.
Hi Dog Lady, I’m also somebody who doesn’t like the idea of being attached to a pump all the time. Humalog is what makes me low, not Lantus. I guess it’s whatever works for you. Although 140 should be post meal, not a fasting blood sugar.
You will almost certainly be able to get on the pump sooner since you’re planning a pregnancy. I said the magic “P” word and got put on the pump about 2 -3 months after diagnosis (would’ve been even sooner, probably, but I moved and switched endos). When I say “be able to go on the pump”, I mean 2 things: 1) your endo signs on, and 2) your insurance will pay for it. The pregnancy thing is definitely a magic word as far as insurance is concerned.
The pump is, I think, better for your active lifestyle. I am getting back into running now that I don’t feel like crap anymore, and have done it more seriously in the past (pre-D). With the pump, you can set temporary basal rates. Lots of people turn it down to like 50% from an hour before exercise to an hour or so after. Read around on the threads on this site. That ability to exercise real-time control over basal rates is huge for an athletic person.
About basal and lows: I’m having a lot fewer lows lately. I think it’s a combination of better D-skills (better carb counting, etc.), the pump, and just having a more appropriate basal dose than I did on Lantus. If you’re routinely waking up at 140, you need basal. That’s too high, definitely too high for pregnancy.
And whether the pump would help you avoid the 200—> 60 drop with your correction dose: no. You sill have to figure out and take correction doses. I think you just took too much, maybe. I don’t really know how to figure out “insulin correction factor (ICF)”, though.
Good luck with it. Trust me, I understand – I just got dx’d 3-4 months ago, at 39.
A couple thoughts. Most of us find our I:C ratios are different at different times of the day. Mine for example are 1:7, 1:8 and 1:18 for the three meals. So if yours doesn’t work well at a particular meal try tweaking it accordingly. Yes, being insulin sensitive is good, though it often makes it harder to dose in whole units. With my dinner ratio, for example the difference between 1 and 2 or 2 and 3 units is a lot and it was hard to get it exactly right on MDI. You should start trying to compute your ISF as it’s dangerous to over-correct.(the downside of insulin sensitivity). When you did the 2 units and dropped too low, figure out how many points you dropped and then divide by 2. I’m not saying that will BE your ISF, but each time you correct, you can add more data and soon you will have a ballpark ISF. If 2 units dropped you that much, start with 1 for safety and see how that works. Also, please be sure and compute your “Insulin on Board”. For example if you took 3 units for your meal and your duration of action is 3 hours (for easy computing, many use 3, 3.5, 4 or 4.5), if you tested two hours after your meal and were 200 and wanted to correct, remember you still have 1 unit of insulin active in your system. So if you injected 2 units for correction, you were in effect using 3 units. If your ISF is 45 let’s say, then the correction would lower you 135 points definitely accounting for going down to 62.
Just FYI 90 carbs is not considered a “rigid low carb diet”. Bernstein followers eat 30 a day. I eat about what you do and consider it moderate/low, though everyone seems to have different definitions. Yes, I agree it’s hard to get much lower if you are vegetarian (not to mention a foodie…lol).
Finally, I highly recommend you get the book Using Insulin by John Walsh, though I find that trial and error is a lot more accurate for computing I:C and ISFs than the formulas he uses. I do think his general information is extremely valuable for a newly diagnosed (or not so newly diagnosed) Type 1!
Thanks so much for the book referral. I am ordering it now. I agree I’m not too “low carb” but I think I do pretty well considering I’m vegetarian and I’m a generally picky eater (although I will eat just about any kind of vegetable out there).
We are also planning for pregnancy. Had an easy time getting my Revel with inetgrated CGM approved. As others have said, I love the pump for the flexibilty it offers. The ability to decrease the basals for exercise, being able to take vey small amounts of insulin for food, rather than eating up or down to match the one unit on the syringe or pen. I love the integrated CGM and how it helps to manage my D including the predictive low alarms that the Revel has. I am also on a very low TDD of about 20-25 units depending on the amount of carbs I eat. Your TDD should not have an impact on your ability to get the pump.
Oh, I agree, DogLady! When I got diagnosed I didn’t think I’d have to change my diet because I ate quite healthy compared to your average American. But as a vegetarian I ate a lot of carbs. When I realized that I told myself that if my health required it I’d have to eat some meat, but I didn’t want to and I feel, for me, I’ve made a good compromise. I’m lower my carbs a bit because I’ve gained 7 pounds of the 40 I lost at diagnosis, and I don’t like that. But I doubt I’ll be able to lower it much further than 70. I think we all make choices depending on what’s important to us. I don’t judge anyone’s choices, but I do wish there was some uniformity for what we meant when we said “low carb”, “moderate carb” or high carb. I commented on another thread that people were saying they ate low carb anywhere from 30 to 180 and it makes it hard to communicate if we use terms so differently.
Yes, many people like that book or Think Like a Pancreas. They are the two “bibles”. Then Pumping Insulin also by John Walsh, which I got when Istarted my pump.
I think much of it also depends on individual level of physical activity. Given all the exercise I do (distance running and cycling), I have to consume at least some carbs to keep my energy level up. I am hovering right around 80-100 carbs per day, depending on my level of physical activity. Given that the RDA is 200g carbs, I think it’s safe to say that I’m a moderate-carb kinda gal. Eating meat for me is just not an option. I can sometimes stomach fish, but I’ve had a variety of food texture/gag issues all my life. I do, however, love salads, cheese, nuts, eggs and a few other protein-rich foods, so I have good variety there. I am trying to set up an appointment with a CDE/dietician in the next few weeks to go over what I’m eating and make sure I am getting all the calories and nutrients I need. I am not overweight and don’t want to lose anymore weight (in fact, I could probably stand to gain a couple of pounds at the moment).
Thanks for this info. Yes, I agree that I need to learn how to work carbs into my diet smartly. The problem at the moment is that my insulin requirements seem to change on a daily (if not hourly) basis. I am logging all my numbers and what I eat. I’ve definitely discovered that certain foods digest differently and, therefore, result in more stable numbers. I had a rough weekend all around, spiking up into the200s and then crashing back down.
Interesting perspective about the CGMS/pump. There are things I like about the pump, and things I don’t. I don’t like the idea of being tethered to something. I don’t mind injections; with the pens, taking insulin is pretty convenient. I also don’t like the idea of not knowing whether insulin is going into you. With a pen, you know you’re getting the insulin. Also, I want to be able to manage my diabetes “manually.” I do a lot of backpacking/camping/hiking/etc and I want to know that if I need to, I can control things flawlessly in manual mode. That said, I still want to at least discuss the option of a pump with my doctor, and perhaps a CGMS too.
This way you will see trends and you will detect early when the honeymoon phase is about to end.