My daughter is 20, she was diagnosed with type 1 in Dec 2012. She's been using an insulin pump for months now, as well as a continuous glucose monitor. She exercises daily, eats healthy and works hard to take care of herself. We've noticed that over the past several weeks she's been running high, despite her taking the correct insulin for her meals. It's weird, she keeps slowly creeping up, and thank God for her CGM that alerts her to highs, so she corrects with extra insulin. But then later on it does the same thing. She had to be switched from humalog to novolog earlier last year because she grew resistant to it. My concern is that it's happening again, this time with the novolog. She saw her endo last week, and he, concerned that her A1C was 11.2, ordered a fructosamine test, which I'd never heard of, but he said it gives a look at the past 2 to 3 weeks where as the A1C does 2 to 3 months. Anyway, her fructosamine result was twice what the labs reference range. I'm confused, I'm obviously concerned. She goes back to her endo next week, so I'm definitely going to be voicing my concerns to him. I'm wondering though, if anyone on here has experienced anything like this themselves. It scares us because we know that high blood sugars over an extended period of time can increase her risk of kidney problems and cause other complications. I honestly don't understand, she is working so hard. It's heartbreaking, because she's already been diagnosed with diabetic neuropathy. Does instability like this just happen sometimes, even if a person is doing all they can? Any help any of you could offer would be greatly appreciated.
Yes, I'm sorry. She eats lower carbs, low fat, no processed foods. No caffeine, she drinks a lot of water. An example of her daily food intake is an egg white omelet with turkey bacon, peppers, onions and 2% milk cheese for breakfast. Usually for breakfast, she also drinks unsweetened almond milk. Another breakfast favorite is greek yogurt with blueberries. Lunch is usually a salad, with mixed baby greens. Her favorites are caesar, with chicken and light caesar dressing. Another favorite is baby mixed greens with blueberries, raspberries, raw almonds and goat cheese. An example of dinner is baked cod with lemon pepper and asparagus, or chicken tacos that I make with chicken breast, 2% cheese, salsa, lettuce. tomato, on carb balance tortillas. These are just examples. I try my best to give her a healthy but yummy variety:)
Snacks, she likes popcorn, fruit, and she loves hummus with pretzel crisps.
Try connecting with a good diabetes educator or facility to have someone work with her on resolving the issue.
1. Pumping Insulin
2. Think like a pancreas
3. Dr Bernstein's Diabetes Solution-he pushes very low carb diet which can be controversial, but the book has a great deal of useful information. Additionally, going low carb (80-100/day) works for many of us.
Eat your your meter...find out what foods cause her to go high and eat those in moderation. Read nutrition labels and carb lists. Healthy for us is generally lower carb and then accurately bolusing ahead of time with enough insulin to handle the corresponding increase in blood glucose. On the insulin end, it is important to have basal and bolus settings correct (look up basal testing).
Popcorn is very high in carbs...I found that out the hard way. Probably 50+ carbs in a microwave bag. Fruit is high in carbs, I eat very little, probably the same with hummus/crisps. For me, whole wheat makes minimal differences. Might be healthier, but same carbs as regular wheat.
Are the numbers from the CGM in the same neighborhood as the A1C?
hi, i would think that if she is going high and correcting and then its happening again a couple of hours later, maybe her basal is off?
Hi leilani. High numbers at times, can, unfortunately be a fact of life for Type 1's and we are often responding to patterns with seemingly no explanation. If it IS a pattern (and not just a blip), after checking for known causes, the best recourse is to tweak doses. When you say, "she's been running high despite taking the right dosage for her meals." If she's running (consistently) high, than it is not the right dosage, or no longer is the right dosage. So the best response is to determine if it is the I:C that needs tweaking or the basals. Has she done basal testing recently? Do the highs come in her two hour post prandial test or in between meals? It's a generalization but if it is two hours pp it is probably the I:C and if it is more time from meals it is probably her basal rates that need tweaking. (For the time zone or zones that is 2 hours before the highs occur). Does she know how to tweak her own doses or does she rely on the endo? I would strongly encourage her to learn how to tweak them herself so she doesn't have to wait for appointments. nobody knows her body like she does. I highly recommend the books Using Insulin and Pumping Insulin both by John Walsh.
Finally, yes, sometimes despite our hard work, things go astray. But hopefully they can come back in line soon! Btw, since she's 20 I encourage her to come on here herself!
That is what I was thinking as well.
To Leilani71 - Your daughter needs as much insulin as she needs and that is clearly more than she has been getting. With an A1c of 11.2 she is spending a great deal of time of over 300. The charts show an A1c of 11.2 equal to an average blood sugar of 275 or so. As the endo to work with your daughter on a round of basal testing which means getting her blood sugar under 160 - better yet under 120 and then fasting and to see if her basal holds her readings to within +/- 30 points. Usually, the first basal test is over night because being able to wake up with a reasonable number gives you a great head start on the day. Unless a pumper has a reasonable basal nothing tends to work.
As a short term fix, she might start a temporary basal at 140% to see if that keeps her steadier. If it helps, but doesn't get her to where she wants to be, she might bump it up some more.
I agree and also think it's important to not neglect to consider the ISF if there is a lot of correcting that doesn't come down to target in 3 hours. We tend to focus on basal and I:C and sometimes forget the ISF can change as well. (And we also can have different ISF for different times of day just like the other two).
She very rarely has popcorn, and when she does it's air popped and no more than a cup. The hummus is a rare snack, too. And most times when she has it it's with celery or carrots. When someone asks about what she eats, I've gotten in the habit of including things like that, even though she has them very rarely. The reason she has them when she does is because she cannot be denied everything.
As far as the fruit goes, yes it's high carbs, which is why she sticks with blueberries, raspberries and the occasional cuties orange, which aren't nearly as bad as pineapples or bananas. But she does need some carbs, and fruit has good nutrients for her. She doesn't eat pasta or rice, no white flour, and the only time she has a tortilla, it's the carb balance ones which have a ton of fiber. I mean, She's 20 years old. I know it's hard as hell on her. I try to help her in any way I can. I research a lot. When she was discharged from ICU after being diagnosed, they told us "60 carbs a meal. 15 carbs for snacks", but come on. I'm obviously not a doctor, but that is ridiculously high. I believe we've found a good range for her carbs, or at least it was until recently.
To answer your question, her cgm is in the same neighborhood as the A1C, as well as her pump. Her endo downloads the records from it every time she goes.
As many health professionals as she has, a diabetic educator isn't one of them. Honestly, I didn't think it was necessary because her endo has always been really good at working with her on everything. That was an error on my part. I'm going to look tonight to find one.
She has a great endo, we like him a lot. Like I said, I will definitely be talking with him about this next week.
Thank you so much for your help. :)
I was thinking the same thing. I asked her about it, for some reason she doesn't think that's it. But that seems like a logical explination.
She was diagnosed in 2012 so I would not be surprised if her honeymoon is over now. The term honeymoon describes a typical phase after the first treatment with insulin. In this phase that can last several months the beta cell mass (the cells that produce the insulin) will recover from the initial attack of the immune systems. This is mainly because they are relieved from the insulin production due to the exogenous insulin. Sadly the honeymoon ends with a final wave of autoimmune attacks. Usually the immune system will then succeed in killing the beta cells or the blood vessels supporting them. In this case the insulin production of the beta cells will not be present anymore and more exogenous insulin is needed to compensate that. Sadly the beta cells have also helped to reduce the glucose spikes after meals. All that must be covered now with just exogenous insulin. This adjustment is very rough and I think you should consult your endo to adjust the basal rates and I:C of the pump to this new normal.
I'm of the same though. A basal test would be really easy to do... Skip a meal and test more often (like every hour or so) to trend her BG over that time. If her bg at the end of the basal test (4 hours or so) raise up, then her basal rates are too low. If her bg goes down, then they're too high. If they remain constant then things are good to go.
Its worth noting as well that many people, including myself, require different basal rates throughout the day. I have 5 different ones set on my pump. To determine these, do multiple basal tests at different times of the day. I'd recommend different days though so that you don't starve her in the process. :)
Thank you for your help :)
I wasn't aware that you could have different basal rates. I will definitely ask her endo about that. In the meantime, I'll talk with her about testing her basal. I think that's a great idea, so we can at least have an idea of whether or not that is an issue. Thank you for your help :)
Thank you so much for this information. I know about the honeymoon phase, however, it was never explained to me this detailed. I never knew a lot of what you explained, and it helped a lot. I will most definitely be talking with her endo about it. Thank you :)
I agree with Holger. It sounds like she's just losing the last of her functioning beta cells and will now require more insulin. I would definitely work on getting her basals right first, and then tinker with the carb ratio and the correction factors. Another thing to consider is hormones. Even 20 year olds still experience hormone fluctuations, and those will affect insulin needs. Especially the week before her period, generally her blood sugars will be higher, just FYI, in case no one has told you guys that yet. And, sometimes, even when you experiment with everything and try your hardest, diabetes just doesn't make sense. We're trying to replicate a human organ with insufficient technology, so you can only do the best that you can. Good luck!
First of all, please dial down the alarm a bit -- she's not in any immediate danger so long as she's not going into ketoacidosis. The other fears about complications, while absolutely valid, are long-term issues -- like years to decades -- of poor control. At the young age of 20, having been diabetic only 2 years, she has nothing to worry about right now.
These high sugar levels are not doing any meaningful damage in the short term.
So, forget all the fear of complications at this point.
Concern over why this is happening is real, but again don't get too worked up at this early stage. Keep working with the endo to get to the bottom of it. Her kidneys are not going to fail in the next several weeks.
richamatik...again, not understanding this basal testing. at what number...when you say "if they - BG's remain constant then things are good to go", is that regardless of number(s). if I stay flat, basically, at 180, is that basal dose still correct? i was high again this AM, bolused, etc..corrected but from 4AM to 12:30pm I stayed pretty much at 180, corrections wouldn't bring BG's down..so, is that still the correct basal amounts. Same thing, if I go to bed high, say 150 but stay basically flat at 150 all night long, is that the correct basal dose? How do we get our fasting numbers down, then? corrections will on work for 3 - 4 hours max and then BG's will just right back up.
poster already commented her daughter has neuropathy. high blood sugars make neuropathy very, very painful. with slow onset type 1, damage can start years prior to diagnosis. continued 300's is not good, especially week after week.
agree with many, need to determine if it's basal or bolus highs, or both, probably coming out of honeymoon, too? I agree too, start with her basal first, hopefully she can find a good pump nurse to help her adjust her basal needs. her endo should be concerned with this and instructing her to increase her insulin needs, rather then testing for something else? we as type 1's have to adjust our insulin needs all the time. i also agree it's very unlike it's the novolog vs. humalog vs. apidra, as the highs have continued. most type 1's use the same insulin for decades and don't develop a resistancy to a particular insulin.
good luck. maybe she could come online and get some advice directly. there are some really great folks on here who pump.
If you are 180 and stay 180 WITHOUT corrections your basal is probably OK. If your corrections bring your blood sugar down to target for 3-4 hours and then you start to go up again without eating, your basal is too low.
The theory is that on one fine day you do a correction that brings your blood sugar to target. If your basal is more or less correct you'll be able to stay there. If you end up high after a meal, a correction will bring you down to target and then your basal will keep you there. Basal insulin isn't meant to take you from 180 to 120.
The theory is easier to apply with a pump.