New to T1 -- How Long Does It Take To Get Better At This?

Type 1 and LADA New to Type 1 Diabetes
1

Hey everyone! I'm sure some of this ground has been covered, but I want to get all my fears and feelings of failure out there. I was recently diagnosed type I. I'm trying not to obsess over my numbers, but I feel like I'm failing miserably... Can you fail at being a diabetic? (Haha).

Here's the background: They originally thought it was type II and gave me Metformin, which I think squeezed my pancreas for all the insulin it had left because now that I'm on Humalog and Lantus, I have to take a ton of insulin... At least of the Humalog. I take one dose of Lantus in the mornings that is steadily increasing (at 15u this morning after I went up 40 points overnight). I have a really low carb ratio (meaning I take a lot of insulin for a little bit of carbs) and wonder whether or not it has to do with my basal. The only thing is that up until recently my basal was fine at 13 and I'd wake up at the same reading as when I went to sleep. Up until recently, I was doing an okay job with keeping my sugars in check using a 1:7 carb ratio, but last night I decided to try a 6.5ish and gave myself 7u for 46g of carbs (my reading was 105 before dinner) and before bed it had spiked to 252. I gave myself 3u to just get it into a more manageable number right before bed, woke myself up at 1:00am and it was 141 (much better), but in the morning it was 184. I guess that means my basal is off? Then what's really freaking me out is this morning I ate probably 10g of carbs for breakfast and took a whopping 8u just to see if it would bring my 184 reading down and account for my carbs, and three hours later it was 194. I've been having panic attacks at work, partially because I'm scared the insulin won't work for me and partially because higher blood sugars make me feel like doom is imminent (haha).

Basically, I was wondering how long it took you guys to get your BG under control. I want it to be perfectly under control because I've always been the kind of person who excels at things, but I know that's unreasonable. I just want to know if I should feel like a complete and utter failure for consistently getting at least one reading in the 200s per day. It's only been three months, but I hate myself whenever I get readings like that.

Also... Is it possible that insulin just won't work for me? It sounds like a dumb question, but it's my biggest fear right now (apart from the medley of diabetes complications I keep reading about lol).

Lastly, how many times a day should I test? My endo haggled with me when I said I wanted six or seven times a day and gave me five, but it's stressing me out. I feel like it's way too little. He told me to test waking, before lunch, before dinner and before bedtime, so that only gives me one extra test a day... I've been trying to experiment more with my insulin, so I've been going a low at least once every few days, and I'm stressing out because I feel like I'm using way too many test strips. :/

Sorry for the length. I just want to stop feeling inadequate. I'm killing myself trying to figure this out and having panic attacks pretty regularly. I know stress can make your readings higher, but it's a vicious cycle: I stress about not being able to get lower readings, which in turns raises my readings further, which in turn makes me stress. Ughhh. Diabetes is fun, no? /endrant

2

Get an endo who has a clue!

RE: Testing

1 - Fasting/pre-breakfast
2 - 2 hours post meal
3 - Pre-lunch
4 - 2 hours post meal
5 - Pre-dinner
6 - 2 hours post meal
7 - Before bed
8 - 3AM check (especially important when new to the disease and trying to make sure you are getting the right evening basal. The 3AM check can also help determine if you have Dawn Phenomenon)

Add to this any testing needed if you are having lows or highs and you can easily be @ 10+ tests/day.

I would also suggest trying to limit your carbs to maybe 25g/meal as you start out. Try smaller meals, maybe a bit more protein (but watch the fat!)

Back to the endo for a moment. I might try laying out your reasons for wanting more tests in writing and ask for a more detailed response - - maybe ask for a meeting beyond the normal 10 minutes where the endo is rushed between patients. You might also argue that more testing especially as you are a new diabetic is important and perhaps you could move to 4-5x/day later.

In my world, I make the decisions after discussing with my endo. My endo never dictates to me. Keep fighting for yourself!

3

Hi Marie. The short answer is however long it takes. I've been at it just over a year and am feeling pretty comfortable finally. But, every day is a new adventure. Remember, you are now regulating the fuel supply to your body manually. Something you never have done before. The biggest thing for me was figuring out why I felt strange or tired or??? What was my body telling me. While I was going through this discovery process and trying to establish a diet and schedule I would test as much as 12 times per day.If you haven't already you should check out Blood Sugar 101. It really helped me through the process of figuring out my BG and food.

IMHO good D management starts with learning. BG, your body, carbs, insulin, exercize, schedule, diet and D in general. You really need to have a grip on so much to truly be in charge of your own well being. It just takes time. The stress and anxiety are from the unknown. Believe me, I understand that. As you learn more about D and yourself it will begin to melt away. You're right about perfection being unrealistic. Just too many variables. But, I think the old 80/20 rule applies here. If I can get the results I seek 80% of the time I can work through the other 20% if I have the knowledge I need.

For me TuD has been my lifeline. I spent many hours the first few months searching and reading posts and following links.It was the best stress reliever I could hope for. Virtually every question or problem I had was answered by multiple PWD who had already experienced it. I found knowledge, hope and understanding which I desperately needed. I have no doubt that you will get some great advise and support with this post. There are folks here much more qualified than I am to help you with the science and details. Learn all you can Marie. It sounds to me like you are on the right track.

4

Hi Marie! First off, take deep breaths and cut yourself some slack! This is still all so new to you and I remember how overwhelmed I felt at first. I was diagnosed 25 years ago at the age of 27. Like you, I was first thought to be Type 2 and put on oral meds which didn't work...which lead to my endo and Type 1 diagnosis.

You sound like you're on track and gathering all the info and tools you need to take care of yourself. Please know though that you can't beat yourself up when your control goes haywire...easier said than done I know. The thing is that there are so many factors out of your control like the weather, hormones, stress, and what people around here call "diabetes gremlins" because sometimes you just don't know why things go haywire. So first and foremost, don't blame yourself. There is no such thing as a "perfect" diabetic.

Your instincts about testing frequently are spot on. Have another chat with your endo and push again for a prescription for test strips written for 10 to 12 times per day. You may have to be a little pushy to get what you need, unfortunately, but you have to advocate for yourself. I'm not a confrontational type person, but when it comes to the cost of test strips, I will demand what I know I need. My prescription is written for 10 to 12 times a day but sometimes I test as often as 14 to 15 times if I'm having control issues.

Good luck and chin up! You will find lots of good advice here. :)

5

Hi Marie,

I was wondering the same thing this morning. I was dx 4 months ago and it has gotten better, but will I have to think so hard everyday about what to eat and what to inject or will it become second nature. I’m guessing that we will have good days and bad days. I noticed high ins:carb ratios in the beginning too and it was depressing. I felt like I must have done some real damage to my body to be so insulin resistant. I found with the use of a CGM I was better able to see what was going on. I have a pretty consistent dawn phenomenon which makes me go up 30-40 just by getting up and going. Caffeine also raises my BG, driving in traffic, and watching my kid play soccer(she’s a goalie on a comp team). These are issues unrelated to carbs causing my BG to spike. Get a CGM, see if you can get a trial. Complain about lows if your endo isn’t listening. They don’t like lows. Get extra test strips. Shawnmarie’s idea is a great one. You need to test more and you are stressed about using too many and that’s making it worse. Start exercising when you feel like you can handle another component. It helps me so much. Only time I feel normal again actually is after being on the treadmill, even though it makes me test that much more.It will help your ins:carb ratios.

6

Sorry my iPad isn’t letting me edit. Anyway you will have the occasional 200 number. You just have to test and correct quickly, but watch for stacking. It’s a lot and a bummer. For some reason I feel I can do a better job and feel better about D when I read this forum. So I do. You aren’t alone. Good luck!
M

7

I agree w/ Mike Ratrie’s chart except I have one that comes up w/ 12 tests as a minimum, rather than his 8, and I don’t usually bother testing at 3:00 AM. I find that the end of an insulin bottle generally doesn’t seem to work quite as well as the beginning so if there’s something to that, it could make a difference? I also sort of expect “change” which generally manifests itself as numbers not being where I want them and I have to figure out how to fix it. It’s hard not to think “I screwed up” but it may just be an ongoing wave of change? Even “bad” results, particularly taken into context with other results, can still be GREAT data to use to figure out where the changes have happened and whatthehecktodoaboutit. And then give yourself a bonus for doing a good job figuring it out.

8

Oh yeah, re the endork, if he’s only begrudgingly giving you 5 strips/ day, I would fire him and get someone who is more attuned to your desire to figure out what’s going on. A few years ago, before I had a CGM, I was ina martial arts program I’d do for 1 or 2 hours at night and ran 2-3 miles and lifted weights @ lunch and tested 17x day for a couple months of that, because I didn’t want to run out of gas.

9

Short answer: if the insulin wasn't working for you your bg would be 1000+ and you'd be in DKA. You may have come into this with some false preconception (probably the one most popular among the public) that if you take insulin then everything works out automatically. Abandon that preconception, it was never true, in fact adjusting doses in response to bg's is a task that takes constant dilligence and attention and planning. And BTW a task that you are doing great at!

I think you're doing great. Just for reference I've had T1 for 30+ years and you know more than I ever did when I was a kid.

Do not compare your numbers with anyone else's and feel bad. I got in that trap for a while. If necessary just turn off the computer and don't look at those websites that predict doom and gloom at 140. I look at the numbers that you worry about, and I think you are doing great, probably better than 80% of T1's who have been doing it much longer than you!

10

Thanks everyone! I just feel like I should be better at this. Do you think the Lantus would just stop working overnight? Haha. I took 3 units to correct the 194 at 10:30 and I tested at 1:30 and it's 192. What the heck!? I mean... I did eat a low fat string cheese, but it only had 3g of carbs in it. I just want to know what my body is doing. I'm glad you all are being nice to me. My dad has T1 and he keeps telling me it's no big deal to run high in the beginning as long as I'm making progress towards my goal, but his A1C is not the best so I like to hear from a few other people who don't seem to think I'm doing horrible. I like being able to rant here, too. Today when I texted my mom about how I can't control my BG and said "fml" she went off on me and told me it's like I'm beating her up. I can't handle people expecting me to just be happy. I can't count how many times people have been like "Be happy it's not cancer". It isn't helpful. It just makes me feel guilty for being upset.

11

We ALL have been through tuff stuff and WTF readings. Your dad is right. Highs and lows will happen. Just keep learning from them, correct them and move on. You have a great spirit and attitude Marie. Your confidence will grow as this all becomes more familiar to you.

12

Hi Marie, and welcome! I am glad you found TuDiabetes. Others have given you excellent advice here. It takes quite awhile to get things under control! I have found the best books are "Think Like A Pancreas," "Pumping Insulin," and "Using Insulin" (the last two by John Walsh). Those might help for the basics. I also wrote a blog for the newly-diagnosed Type 1 that I hope is helpful. Finally, testing 5 times a day is just not enough to get things under control and also to accomodate exercise.

13

Hi, I'm also new to type I (17 years of 1.5, 1.5 years on basal insulin, 3 months on prandial insulin, 2 weeks on the pump), but being a doctor who cares for people with diabetes (albeit as a psychiatrist) you would think I would do better with this. I'm scared and confused a lot of the time, and my endo also wont prescrigbe enough strips. She tells me to test before and after each meal, at bedtime, and every 15 min if I'm high or low....and thinks this adds up to 150 strips a month.

I'm lucky, though, and was able to write my own prescription, but then I was afraid the insurance company would balk so I had my internist, who has better math skills, write the prescription for ten strip a day, thank goodness. I was surprised when I started to come on here to find that other endos have the same arithmetic problems mine does. they seem to feel that we are trying to get away with something-maybe selling those strips on the black market?

14

Your doctor's advice to test four times per day seems more appropriate for a Type 2 diagnosis. I don't understand his reluctance to write for whatever number you want.

I've been at this game for 28 years and my doctor writes me a prescription to test 16 times per day. In addition to some of the testing schedules included in previous comments I would add these: testing before driving and at least once per hour for longer drives; testing one or two times after giving a correction dose; testing a second time to confirm a very low or high number that necissitates more extreme treatment (a high insulin correction dose or a large amount of corrective carbs); testing when not feeling well; testing before, during, and after exercise; and any time you darn well think you may need it!

Testing only four times per day for a T1D is like taking a blindfolded drive on a crowded freeway and only allowing yourself to peek once every five minutes! Some people may get away with that but I'm not one of them. Of course, "your mileage may vary."

15

I have to agree with everything Randy says. I am 3 plus years into this and it has become the norm for me finally. But you need to cut yourself some slack. You are learning more things about your body and how it reacts to food, stress, exercise etc. than most people ever have to think about. I am also like you in that I always try to do things perfectly. I loved predictability. It gave me so much comfort. Diabetes had taught me that none of us really has that in life. You really do need to take it one day at a time. Most will be good (once you figure things out) and some won't be as good. But places like this are a lifeline as stated above. The best piece of advice is to read and educate yourself as much as possible. Finally, follow your gut instincts about what you deem is correct for you. In most cases you will be right.

16

As the grandmother of everyone on here and of a lot who aren't:
1. Insist on an Endo who gives you a CGM, Dexcom by name. It's how you learn what different types of carbs are doiong to your BG and how fast. Devise your food record to hold your time, test record, food by name with grams/estimate, and # units each type insulin.
2. You take charge by saying you've got to test 8-10 times daily right now while you're getting it under control, while you're testing out small amounts of food and their effect on your BG, while you're doing extra trial and error.
3. This isn't your Dad's diabetes. You can get it under control and miss all the complications with the gadgetry that's available. As a college student, a pump is #2 and should be getting ordered now. If Endo isn't giving you these things, shop around. You're too young to miss these electronic helps. Get with a university or the best Endo group in your city - e.g., CDEs on his team.
4. Feeling inadequate for the job is par for the course. You can take deep breaths and let them out slowly. You've reached out here, and we all know what you're feeling. Hey, getting it under control is better done slowly than faster. Doing it ultra rapidly comes with its own set of symptoms which you don't want.
5. It isn't failure to have a reading in the 200s. It's knowledge that you can then deal with. Know what a unit reduces your BG, know what insulin is on board, get Walsh's Using Insulin and Pumping Insulin. Know what 7 grams of different kinds of starch does to your BG. Know what 7 grams of veggies does. Know what 5 grams of protein does and learn to give some extra insulin for protein and recognize when it's taking effect. Know what you want off your everyday foods list and keep it off. Cheers for the rant!

17

Hi Marie-

I've been at it for 5 years and have a slightly different perspective from most who answered here - although I am in Tim's general camp.

It is going to take time for your body to settle down. If you have a stretch where the numbers don't make sense, call your endo or CDE and ask for help. I was allowed to email my numbers to a CDE every three days for my first six months and for the first four weeks I was called back with an adjustment to my basal and bolus every time.

Yes we all need CGMs and should test 12+ times a day but not all of us do. I test around 10 times a day and do fine. For the first 3 months, I was testing only four times a day, at about 6 months I was up to about 8 and I didn't start testing 10 times a day until I started pumping at a year and a half. If testing only five times a day makes you anxious, ask for my more strips as a means to make you more relaxed. That might work with your doc. You know - it's me not you. Your endo probably has a clue but might like to break clients in slowly. It's probably not a good time to go shopping.

One doesn't have to be perfect to make very good progress. For the first six months my insulin regime was a mess. Too much basal, too little bolus leading to frequent mild lows and a very inflexible routine. On the bright side, my A1c dropped below 6. My A1c actually went up for six months after I fixed the regime and learned a lot more about carb counting and insulin management. Eventually it came back down.

Don't take what you read here for gospel. I would regularly try out things I "learned" on line such as it is important to prebolus for almost all meals and found out that my experience was different more often than not. Of course, don't take this comment as gospel either.

I was told at the Joslin DOIT program that it takes about a year to learn what you need to know. That seems about right from my experience.

Good Luck,

Maurie

18

Thanks so much for all the support! Just to update you, I had my endo appointment yesterday. My doctor put a lot of my fears at ease. We determined I am extremely carb sensitive. In the morning, my I:C ratio is either 1:4 or 1:3. Not sure yet. This number was scaring me, but he explained it's not about being a "bad diabetic". It's just what my body needs. He said if the doses are working for me, then they're working for me. Simple as that. That being said, my very first A1C since finding out I was diabetic with a 9.6 A1C was an 8. I can honestly say I'm pretty happy with that given the past three months have been a roller coaster ride from hell. Haha.He said I'm right on track to be getting this under control and told me a 7 the next time we meet will mean I'm getting everything nailed down.

He also mentioned something that sort of flattered me but freaks me out: the pump. Already!? He laughed at my obsessiveness multiple times during our appointment (in a nice way) because I came in with a chart of times I wanted to test to ensure I got the test strips I needed (he ended up prescribing me 10 a day! Waahoo!). We intelligently discussed the dawn phenomenon, insulin resistance, splitting my Lantus and accounting for the time change I'll undergo in July, and my fluctuating I:C ratios. I have to owe a lot my knowledge to reading topics on this site, as well as several conferences I've attended to understand this thing. He thinks I'm some little diabetic genius or something already knowing so much, but I've always been the sort of person who needs to find out everything there is to know about something. That being said, he recommended I go on the pump because judging from how much I know about diabetes I'll be able to handle the switch. I'm nervous and excited, still not sure when I'll convert just yet since I will be studying abroad in England for six weeks this summer. I want a pump so bad. Shots don't give me any flexibility whatsoever, and I'm a college student who doesn't want to plan out every meal and snack three hours ahead of time. Haha. And at Oxford, we're apparently going to have five course dinners every Monday night and I want to eat them somehow or at least eat a little bit from each course.

I guess diabetes is about small victories, but I just have to say this: I hate this. I know you all can relate, so I'm just saying it bluntly. I HATE having to think about everything I'm eating. I hate people trying to pacify me with "at least you don't have cancer" types of arguments. I hate that I'm not handling this perfectly. I hate that I'm being judged for the times I can't help but cry over this... And I hate that even 5g of carbs spikes my blood sugar. Last night my blood sugar was 85 and dropping before bed, so I had a small bowl of cereal with almond milk and this morning I woke up at 180. I'm having less and less 200 readings, so I guess with some work those 180s will become 160s and then 140s (ideally).

Thanks again for listening. Hopefully one day I'll be able to be stoked about my right to bring food with me everywhere (like Disneyworld and my college football stadium), but right now I just want to eat a piece of cake, take a shot of vodka and go back to being a carefree college student.

19

"insist on an endo who gives you a CGM" -- just FYI, Marie, it's not always the endo who makes it hard to get a CGM. Mine wanted me to get a CGM when I was planning a pregnancy, but the insurance company turned me down TWICE because my control was "too good". They didn't even respond to a third attempt. I've since switched insurance companies, but haven't bothered trying again yet (even though I now AM pregnant)... I just asked my endo to up my prescription for strips. He gave me 12/day, which is pretty awesome.

20

You know, mine brought up the pump within, like, MAYBE 2 months of diagnosis. I went home and cried. I was totally freaked out too. But it is AWESOME.

-- basal rates tailored to different times of day, esp in the early AM hours. No better way to beat DP.

-- you can turn down the basal before exercise. Fewer lows.

-- you can eat little bits of this and that ALL DAY LONG. When I was first diagnosed, I really tried to only eat 3 times a day, with carb free snacks in between... (They'd SAY that I could have up to 15g without bolusing, but yeah right! 5g has a noticeable effect on me, too.) I was miserable. That's not how I eat. Now, I bolus like 8-15 times a day. I eat like a normal person, when and how much I want. It's not a shot, just a few button presses. 5 course dinner? Bolus 5 times!