Okay so it's been about 2.5 months since diagnosis of type. I'm honeymooning, so I'm told. I take 5U of lantus at night and that's all. My BG's are doing really good. In the past week, 1 reading over 150, 1 reading below 80. I've put some of the weight back on that I lost before finally deciding going to the hospital - DKA and a fasting of 550! So here are some questions that I'd like some advice on.
1. My dietician has me on a diet of 270 carbs/day. It's a 2500 calorie diet. And if I exrcise I need to take more to avoid a low. I know that many people swear by the no/low carb diet. Are there people who are on such a HIGH carb diet?
2. I know I'm not supposed to miss meals. I totally understand why. But, I'm a junior in college, I want to sleep in on the weekends, am I allowed to?
3. Anyone start pumping with insulin as low as I'm on currently? I have one, along with a CGM sitting right next to my desk. My endo and the pump rep just can't set a date to meet.
4. 5U of lantus is not a lot, I'm well aware of that. With a 270carb/day diet and only 5U of lantus, could it be a misdiagnosis? I know about the honeymoon and all, and I shouldn't get to thinking like this, but could it be?
5. I take my lantus at 11:00pm and usually have a BG 135-150 and wake up at 80-110. (I eat a 30c snack at 9:30). Should I eat a snack if I'm at 98? My biggest fear is that I'm going to get a hypo in my sleep. If I'm this low at bed I'll eat a snack of 15-30g carbs. So far this has worked but do I need to do this?
Basically I'm just looking for people who have been where I am now. I'm still having a hard time accepting my new lifestyle. I want to get back to being the "old me." I've become kind of a regimented person lately, which I know is good, but I want to be back to my old, much more spontaneous and flexible me.
Thanks everyone for the help! :)
Hi Tim, welcome to the club! I will try to answer some of your questions for you… there are tons of people here that will help out too…
The amount of carbs- I think your dietician has you on that based upon your previous diet and the choices of things that you like to eat… I know when I initially had my diet made for me, it was WAY more carbs than I’m use to eating and I was able to work with my dietician and cut back. Today, I consume around 120 carbs a day. It’s not low carb, but it’s better for me.
Missing meals- when you’re on MDI (multiple daily Injections) it’s really hard to time insulin, especially a long acting one like Lantus (for me, Lantus did not last 24 hours and it peaked), so you don’t want to skip meals because of the increased risk of hypoglycemia.
Pumping- I’ve been pumping for 7 months now and honestly, I don’t know whether or not you can do it, but my guess would be yes. I mean, you’re on 5 units of Lantus a day, they would set your basal rates and that would be it until you have to start covering your meals.
Misdiagnosis- It’s pretty common to think, No, this cannot be me, there’s no way, it’s got to be a misdiagnosis, I don’t have diabetes… well, when you were diagnosed, your doctor ran lab work, hopefully, outside of your fasting BG and that lab work is what helps your doctor determine if it is just a fluke or if you have diabetes. We all started on really low doses of insulin. My honeymoon only lasted like 2 months once I was diagnosed, but I was sick for months. I started off on 10 units of Lantus and it gradually increased and before long, I was right there with everyone else. Now, my total daily insulin requirements is 50-60 units.
Overnight Lows- These always scare the crap out of everyone. No one likes them. I never go to bed below 100, ever. If I’m at 99, I will have a small snack just to get me to the 130’s range.
It’s a hard road the first few months, it gets easier, but not by much. Planning can be your best friend with diabetes. It’s great to be spontaneous, but it’s one of those things that requires a bit of planning before. When you do get your pump set up it will help a lot with flexibility. If I want to sleep in, I can, if I want to skip a meal or delay one, I can. That’s not saying the pump is prefect but it helps allow more of a normal lifestyle. I hope this helps some and I know others will chime in here with more answers for you!
welcome to club 1,
yeah, i eat about 300g of carbs a day, although that’s because i live an extremely active life, once your honeymoon is over you can reduce your short acting insulin rather than eat more to compensate for exercise.
are you allowed too? i know when you are first diagnosed it can seem like there are all of a sudden rules to life that were never there before, but they aren’t really rules, just better or worse ways of doing things. can you sleep in? well as you are taking your lantus at night (thus not having to get up in the morning to inject it) yes, you can sleep in, you’ll have to be careful to make sure that you don’t go low, but otherwise you can just bolus and eat breakfast whatever time you get up (when you start pumping/MDI that is). Although i’m not really sure what the procedure for sleeping in would be for you during your honeymoon because I never really had a honeymoon period, i completely cooked my beta cells before going into DKA and getting diagnosed…
as for skipping meals though out the day? i do it from time to time, when i’m busy at work and the like, i just have a snack every 2 hrs or so to keep my BG up til i eat a proper meal next
i’ve never heard of anyone starting pumping on such little insulin, i’d imagine it would waste a lot of insulin, since you would use so little over the 3 days before you have to change your infusion set, but i’d listen to your endo on that one!
everybody wonders whether or not they could really have type 1 after they’re diagnosed, it takes months/years for it to really sink in. you’ve gotta expect that of something that upsets the balance of your life so abruptly and violently.
everybody is scared of, and hates night time hypos passionately, if i’m below 6.5 (117) i’ll have an extra 15g of carbs on top of the 45g i eat before going to bed, but those 45g are to keep the rapid acting insulin that’s still hanging around from tea from making me go low over night, If it is more than 4hrs since i last injected any rapid acting insulin, i’ll only have a 30g snack before bed. Again, i don’t know the procedure for when you are in your honeymoon. sorry.
what Elizabeth said is true, it does get easy after the first few months, but not by much. BUT, it does get a a lot less scary, and you get a lot tougher, you’ll find yourself capable of things you never thought possible.
and don’t worry, you haven’t lost the old you, he’s just hiding, he’ll come out to meet and greet the new you when he realises that they are the same person.
For the life of me I really don’t understand this sort of treatment. A diet with 270g of carbs is pretty darn high. And using Lantus? A bolus correction method would seem more appropriate. And pumping? This is a honeymoon. You very likely won’t how you are from day to day or even meal to meal and the detailed bells and whistles of a pump will just drive you crazy. The GCMS on the other hand can be useful, it can tell you more closely what your body is doing. Here are my suggestions
Ditch the high carb diet, target 100 g carbs/day and start a high protein diet, try to get 300g/day with another 200g/day of healthy fats for a total of 2700 calores. Low carbs will result in lower blood sugar spikes when you do have lower insulin production.
Using just Lantus, you will go low if you don’t eat, you can’t skip meals/snacks, bring a snack. Perhaps a certain number of crackers. There are some good low carb nutrition bars.
Pump seems premature, CGMS would be useful.
I would actually skip the lantus or only use lantus if your fasting blood sugar rises. Ask for a bolus. Use a corrective bolus after meals if your blood sugar is high. Correcting after meals may mean that you have some elevated blood sugars, but it will enable you to adjust on a meal by meal basis for highly variable insulin production.
You may well be elevated at 11pm because you ate carbs. With the Lantus regime you are on, you would be well served to just always eat a snack at night before going to bed.
Other good books include “Think like a Pancreas” by Scheiner and “Using Insulin” by Walsh.
Keep records! Your endo & a pump starter need these to know what’s happening even with the 5u Lantus.
Write down: Time, test result, foods with grams carb in for each, next test.
If you are not taking a short acting insulin, they want to know how Lantus is doing over the whole day and night between meals.
It is supposed to be used by your body cells day and night. It is supposed to keep you even. It may mitigate meal time needs, but it is not for handling the carbs you put into yourself.
It is an incorrect dosage or it needs dividing into two shots a day, or you need short acting insulin if, four hours after a meal, you are either high or low. A short acting insulin will be added at some point to take care of your meal needs.
Some people notice that Lantus peaks 3-5 hours after taking it. You can check this by setting a clock for four hours after you take it. How low are you? After you know that, maybe you’ll sleep easier.
You said you know you’re not supposed to miss meals. I miss meals and change meals and do whatever because the Lantus is set at the right dose. It will never put me low. I take it twice a day, more when I get up, less at bedtime. You want your Lantus set based on your records of when you don’t eat.
If you find that an hour after meals you’re way up - above 140 and going to 180, that needs to be shown to your Endo. He’ll know you’re starting to need some short acting insulin - and when you get your pump, you will learn to bolus for meals.
Since you’re the person who’s in charge, get the books sbc said. They’re worth a read.
You’re doing well. The Endo is looking ahead.
I agree with everyone here that fewer carbs and higher protein would be more satisfying. Protein changes to sugar over a longer time period. See what it does. Do research on yourself with the food.
No it’s not a misdiagnosis. Regimented is good. Thinking first is GREAT. You’re thinking well. You’re maturing.
Basal insulin is the level of insulin required to maintain proper fasting blood sugar levels. I am not clear Tim has any basal requirement at this time. Do you think he does? At the very least, the need to eat regularly means that 5IUs of Lantus is currently higher than his actual basal requirement. My point is that when insulin production fails, the first thing to go is the postprandial blood sugars and then the fasting levels. Using lantus to cover elevated postprandials is a “crude” treatment regime.
I am not disagreeing that a pump is great for control of stable t1s, but it is not designed for honeymooning diabetics with variable insulin requirements. You can’t just program in your I:C and basal needs and think that it is going to work. In fact, it may just be more of a bizarre annoyance. In either case, I would only suggest that Tim make changes to his treatment regime under the direction of his doctor.
I empathize with your sentiments; you should ask your endo questions like this, like “How did you know for sure that I was diabetic?”. They have a lot of technical answers for you! That’s a lot of carbs in your current diet, yes, but too many drastic life changes would be too much to deal with; its good your dietitian in trying to account for some of that. I am very biased to pumping, and should the need arise I would suggest you jump onto it. But for one injection a day that seems to be going well right now, why would you want to pump? Wait until your in need of all sorts of basal and bolus help, then jump on this cool technology.
Good luck Tim, you will be OK! We’re all good friends here!
While pumps are invaluable for many, telling a newly diagnosed T1 that it’s “simply the gold standard for insulin therapy” is a sweeping generalization. I’ve mentioned my objection to this statement before, as have others.
Small doses of rapid acting to correct highs would helpful. There’s no need to be having highs of 150 regularly. Lantus isn’t addressing that.
A pump has advantages and disadvantages, and I have no experience with the pump and honeymoon so can’t get an opinion either way. But I do want to point out that you don’t need to use the pre-programmed I:C ratios and correction factors in the pump if you don’t want to. You can tell the pump to deliver X.XX units without needing to constantly change its programming if your insulin needs change often. I do think it might be overkill for someone who seems to still have a lot of their own insulin production, but it does have the advantage of being able to deliver very small bolus doses such as 0.25 of a unit and fractional basal rates of say 1.35 units a day that can be tweaked to meet the body’s need exactly, which is just not possible with pens that only do whole units or long-acting insulin that provides a flat profile throughout the day.
Tim, you forgot the very important 6th question: Are all people with diabetes completely opinionated about therapy and treatment? The answer, along with our secret handshake, is yes.
There are general guidelines for treating type 1, and they differ depending on your age and gender and activity level. The reality is much trial and error to get to a calorie/carb count, medicines, doses, and the other tools we use (and then, life changes and those tools must be recalibrated–you should try pregnancy as a type 1–oh, you can’t :-).
Living through a honeymoon with some beta cell insulin production is likely to require more adjustments than suddenly producing no insulin. But it also means your body is helping you out in a way I haven’t enjoyed for, oh, 36 years.
- No need to wake up every night, but I recommend testing at 3 a.m. on occasion to see how low you go at night. Especially important on nights you consume alcohol, if that is something you do.
Best wishes. You have a major advantage over me at diagnosis. You’ve already found a whole army of people who live with diabetes every day and know lots of tricks. It’s never easy–but it does build character!