Just Diagnosed (officially) with T1

Thanks for this info. Very good to know. I am going to speak with my doc about it when I go back next week. At the very least, I want to get the approval process started. I can always bail if I decide it’s not for me. I still want to learn how to manage things on MDIs, but I’d like to try the pump too, especially given that I may be getting pregnant this year.

Let me preface all of this by saying I also was dx’d at 32, and am now 36, on the Omnipod pump and use the Dexcom 7+ CGMS.

  1. Yes, you’ll need basal. You probably need it right now, but are covering for it with a higher I:C ratio than you might otherwise need. Your fasting should be below 100 and the basal will get you there. I read in an earlier comment that you are just under 20 units TDD right now without basal - that’s my TDD with basal so your TDD shouldn’t determine getting a basal insulin. Also, if you go for long periods of time without eating, what happens to your blood sugar? If it does not remain level, then you need basal. I completely understand the fear of lows, but it is going to happen. You shouldn’t let that determine when you ask for basal.

  2. In my opinion, pumps rock. I hated having to whip out the pen for every little thing I ate (i tend to graze during the day). I first got the Minimed pump with tubing, and thought that was a miracle worker until I switched to the tube-less Omnipod. This pump makes me feel almost like I don’t have diabetes. Some people just prefer MDI, but I find that for a busy lifestyle the pump is much easier. To eat, you just push buttons. And the best part is that is allows for varying basals. You’ll find that when you get on a basal, you’ll need different amounts during the day (and night). I need 1u/hour in the early morning to combat dawn phenomenon but I need no basal in the late afternoon right before I workout. MDI will not let you do that. Pumps will. FYI - I started pumping 3 months after diagnosis, and would like to have started earlier but appointment scheduling wouldn’t allow that. My insurance states that they won’t pay for a pump unless you’ve been doing MDI for 6 months, but apparently they’re not too strict on that fact.

  3. CGM totally totally totally worth it. If it works for you. I used the Minimed before, and although it wasn’t very accurate, it did allow me to see trends. The Dex is very accurate for me and I honestly don’t know what I would do without it. It lets me see when I need to jump off the elliptical to avoid low blood sugar. It lets me make it through a whole gym class because of the pending-low alert so I just eat some candy and push on. It’s awesome. I still test 8-10 times a day, but that’s not enough for how active I am and how varied my eating is. As others have said, people tend to talk about the bad things, but rarely do they just post about the good.

  4. It will be a trial-and-error thing, possibly for the next year or 2. But one thing you should heed, try not to exercise with bolus insulin in your system. And make sure you keep carbs handy. And your insulin needs could drop as much as 8-10 hours (or possibly more) after exercise.

  5. I think I’m still producing quite a bit of my own. I haven’t spiked above ~275 since diagnosis. Before I started insulin, I was regularly in the 300’s, and considered 280-290 low.

  6. Haven’t heard of it, haven’t tried it. You’re going to need basal. Best to start accepting that now.

  7. I’m mostly vegetarian. I eat a lot of salad w/ veg and beans. I also eat a lot of cheese, greek yogurt, dairy products, etc. And eggs. My morning breakfast consists of eggs and soy protein patties. Because I cannot handle carbs in the morning.

You’ll eventually start getting used to things. I’m 4 years in and I feel like I"m finally getting a handle on it. I haven’t gotten above 160 for a couple of weeks which is crazy-huge for me. I also haven’t had a low below ~55 in months either. And to let you know, I’ve never passed out from a low or had to go to the emergency room or anything like that. I live alone and was terribly freaked out by the stories I’ve heard, but I think getting diagnosed later in life makes the low-high swings more moderate. The lowest I’ve had was a 38 and I was totally able to realize it and eat a whole roll of Sprees (ok that wasn’t smart, but whatevs - I got the blood sugar back up), and that low was from experimenting with high-fat, high-carb food (Outback cheese fries - so so so good, but so so so bad for me).

Yes helpful indeed! I meet with a CDE on Friday to discuss how I’m doing and my options. Thus far, my Humalog alone seems to be doing the trick. I’m generally waking up under 120 these days. Does it help if I don’t eat a large dinner in the evening and then work out before going to bed? Could that be keeping my morning numbers lower than would be expected? Also, my daytime numbers have been really good, but I’ve been eating very consistently, measuring everything, and eating up/down based on how much insulin I took. While it’s keeping my numbers beautiful, I have a feeling that this approach is not sustainable in the long-run (hence my interest in the pump). I’m a bit of a perfectionist, which doesn’t help…

At diagnosis, I think my A1C was in the 7s. What really confused docs was that my fasting wasn’t terribly high all the time, but my insulin levels were really low. Turns out that my crazy workout schedule (working out really late at night and not eating dinner) was likely keeping my fasting numbers relatively low (in the low to mid-100s). When I started testing at home, it was discovered that my AM numbers were sometimes going into the upper 100s, especially if I didn’t work out the night before and had a relatively normal dinner.

Being on a basal insulin really scares me given my activity level. I am meeting with a CDE this Friday, but in preliminary conversations she felt that a pump would be a viable option. My mealtime numbers are the hardest to control - before taking insulin they were going upwards of 300, even on a relatively low-ish carb diet. I was taking metformin and while it helped slightly, it just didn’t cut it. That’s when they realized I was T1, not T2 as had been initially thought. I am still taking the metformin because my endo feels it will help more than it will hurt, but I still need insulin.

I am really hoping my endo will approve me for a pump. I want to get pregnant this year and want to have good 6-8 months of practicing with the pump before I get pregnant to perfect things. I am worried that she’ll think I’m not “severe” enough yet to warrant the pump. We shall see. The more I read about the pump, I think it would be an excellent fit for my active lifestyle.

Have you considered the pump?

What scares me about long-acting insulin is that it’s just sitting around in your body. I’m the kind of person who likes to go for impromptu runs when the weather is nice. With fast-acting insulin, I know that it will clear my system in a few hours, so I feel safer taking it to cover meals. However, I’m doing about 6 shots a day right now, in very small doses (1-3 units at a time) to cover my somewhat small meals. It’s starting to get annoying because the whole units are sometimes just too much (but if I don’t take any, my BSL goes up over 200).

Interesting, I thought I was on a small dose, but it sounds like I’m not! I generally do a 1:15 I:C ratio. The pattern I see emerging is that I need more insulin in the morning and less in the evening.

I asked the endo about upping my metformin and she didn’t want to do that. She said that 850 2x/day is pushing the upper limits and because of my physical activity level and the fact that I’m on the smaller side, she didn’t want to push it. Her opinion was that I’m just delaying the inevitable and that insulin will give me better control in the long run.

look into a pump and a CGMS. Althought the CGMS are not 100% accurate, it will defenitely make your life so much simpler. When I firt got diagnosed, I went through a honeymoon stage where my pancreas was still producing insulin but after 6 months kaput!!! Good luck and stay active…

I was just in your same position only about 2 months ago. I was diagnosed with “type2” January 2010 as a 23 year old weighing 100 lbs and very active. WRONG I was rediagnosed to LADA after my blood sugar quickly spiraled out of control January 2011 and started on humalog. (I went from fastings of 100-120 and pp of 80-180 to fastings of 120-140 and pp of 180-275 in a matter of WEEKS and was eating a total of only 20 carbs a day and exercising an hour and half a day I was killing myself to try and delay the insulin as long as possible but it was inevitable)
After 3 weeks on humalog my fasting was around 120-140 so my endo added in Levemir which I requested over Lantus due to Lantus having more of a peak. I was very scared about starting the Levemir because I knew that would mean I would have to worry about a low 24 hours a day. I started on 2 units at night before bed and am still taking only 2 units. I have not had one single low from my basal. They will probrably start you out on a very low dose like meMost people take many more units than that a day like 20-40units of basal is the average from what I have read. Do not worry about the basal or try to put it off it really is nothing to be afraid of. Here are two of my most recent discussions about my journey over the last few months including all of my many many questions, fears, and wonderful answers from the people here on this forum it may help answer some of your same questions as well.
https://forum.tudiabetes.org/topics/frustrated-8
https://forum.tudiabetes.org/topics/starting-basal-insulin-tonight
God Bless,
Jenn

Thanks so much. This is very helpful. I go back next Friday to see my endo, and I’m sure we will discuss this. Some mornings, my readings are fine (between 90 and 120). Some mornings, they are a tad higher. For example, last night, I went to bed at 149. Have no idea how that happened because I took insulin with my meal and only ate about 30 carbs. This morning, I woke up at 127, which I didn’t think was too bad, but I know it’s supposed to be lower. The only nice thing, is that I can do a bit of “trial and error” with this. The most frustrating thing is having to take so many shots each day to keep my blood sugar stable. I like to snack, and if I miss a shot with a snack, my blood sugar can go upwards of 200 to 250. I’ve tried changing to a more “traditional” meal schedule, but it just doesn’t work for me. I meet with a dietician next week to discuss things as well.

You’re totally the perfect candidate for the pump. For all those little snacks, you just push a button. And the pump doses in fraction of unit increments (I can’t remember for each pump, but the minimum dose on one is 0.025 units and on others is 0.05 units). Also, if you want to exercise, you just turn down your basal (or turn it up depending on type of exercise and how hard you work at it) ahead of time. And lastly, the pump allows you to have different I:C ratios for different times of the day - that way you’re covered for a lower ratio in the morning and a higher ratio at night (same with correction factors).

Quick update - had my follow-up appointment with my endo today. She said that, given everything, I would be a perfect candidate for a pump in her opinion. I am scheduled to go back in a couple of weeks to meet with one of the endos at the practice who does pumps. But my current endo didn’t see any issues with me being approved. She was very pleased with how I’ve been handling things and thinks that the pump will definitely give me more flexibility (my current complaint). She also said that the pump can be programmed to meet my “basal” requirements, which are pretty minimal at the moment but changing by the day. She felt that the pump could do this better than a basal insulin.

I am actually pretty excited about this! While I initially sort of balked at the idea of having something hanging off my body at all times, the lure of flexibility and really tight control are starting to make me come around.