My name is Cayla and I was diagnosed LADA in November 2016. I have struggled with my diagnosis and was non-compliant for a long time, with an A1c of 14.0 and I think that’s only because the meter doesn’t measure higher than that (I regularly had BGs over 600.)
As far as a little personal background on myself, I am a PA student studying anesthesia with a little less than one year to complete my program. Because of my hectic schedule (i.e. 4 am wakeups ) it can be very difficult to “fit” diabetes management in. I’m hoping with the help of this forum and insight into how some of you juggle everything in your life I will be able to do the same.
I have since started taking responsibility and having better control over my disease. I still am trying to figure all of my treatment out, having started Omnipod 3 months ago and recently obtaining a Freestyle Libre CGM. My last A1c was 10.5, not great but definitely better than the 14+ I was used to. I am always looking for tips/suggestions from others to help better manage my diabetes. We’re all in this together!
I moved your comment to a new discussion hoping more people will see it and reply.
Sounds like you have taken some great steps and have had success in changing your diabetes management!
My son has been using OmniPod for over ten years, yet I remember how different pumping was to injections even though he had only been using that therapy for a few months. I imagine you are logging dosing and bgs and regularly making adjustments to basals, carb ratios and correction factors?
This is a good place to get support and a lot of good tips from people who have been there and done that.
I was diagnosed as a T1 when I was 15. For the next 10 years I pretty much ignored my BG and was regularly in the 300s whn I tested it which was not very often. I recall going to the Joslin Clinic hoping it would be in the 200s so I wouldn’t be screamed at. I was very active, especially with athletics, and was so afraid of going low that I wasn’t overly concerned about a high BG. Of course a low BG is a huge concern in the short-run as it can lead to unconsciousness and even death (I crashed my car after going unconscious from a low) but being high for a very long time can result in serious long-term complications.
Today I am in my 60s and my arteries have calcified (turning to bone) partly from a long period of high blood sugars. Also my kidneys failed (I think a cause was high BG as a teen and young adult) but luckily received a kidney transplant.
Congratulations for realizing you must get bet your BG under control. That is my numero uno tip. Sustained highs and sustained lows are both dangerous and uncomfortable. You’ll get lots of tips here on how to better manage your diabetes. I have many and would be glad to share.
Welcome to the group.I am going to be blunt here! I would not want you giving me anesthesia being that out of control. In saying this ,you have a lot of good friends here to help you.making a plan for you is what works. Good luck. Nancy50
I am lucky that my Endo has a diabetes educator who is helpful. A good Endo should be able to give you some pointers. I watch my carb intake and test frequently. Carb counting is a must.
Carbs are like bread, potatoes, rice, beans, flour crusts, corn, lima beans, barley, grits,tortilla chips, and cereals. Maybe I forgot one. These carbs make the glucose level in my blood to rise uncontrollably.
Hi @ellercl, welcome! As you get your bgs in line, you might not feel so fantastic at first, but will soon. Do you know about the MiaoMiao for the Freestyle Libre? Turns a scannable “CGM” into a real CGM with alerts and so on. It might help you to keep better control overall and also fine tune your dosages/ carb.
Good luck, and congrats on making the decision to be the caption of the ship and not just a passenger on your D-voyage!
Congrats on opting to wear a Libre glucose monitor. It is the single best source of education about how your glucose metabolism works. You must pay attention to what it tells you and be willing to stage your own personal experiments to see, for example, how different meals affect your post-meal blood glucose. I think adding a MiaoMiao to your Libre, as @El_Ver suggests, will enhance your personal safety.
My best tip for lowering your A1C is to try to avoid spikes. That means you have to keep an eye on your BG and get to know when you rise and try to avoid it. It could be pre-bolusing earlier than you do today, or maybe both pre-bolus and ajdust your temp basal to something like 100% for an hour or it could be using extended bolus. Other tips could be always using the same carbs to treat your lows to avoid the roller coasters, and get to know how many carbs you need for different kinds of lows to avoid overtreating. If you get to a point where your BG is more stable and you manage to have fewer spikes, you could try to lower your BG all together.
Getting from 14 down to the 10’s is fantastic and it will just keep getting better as long as you stay on top of it. For years I let my BG run high (200’s or so) because I was afraid of serious lows. I had seizures from low BG throughout my childhood so I had pretty good reason to be wary. CGM’s are probably the most important diabetes innovation in the last 15 years or so, so use it well to find trends and act on the information you get from it.
Have you read any diabetes books like Think like a Pancreas, Sugar Surfing, or Dr. Bernsteins Diabetes Solution? Those are all well regarded books in the diabetes community although Dr. Bernstein is very hard line on how you need to treat diabetes but lots of good info in there anyways.
If you are willing you might want to post some of your graphs with an explanation on what you ate and when and we might be able to help you trouble shoot. Keep up the good work and you shouldn’t bring your BG’s down too fast because it will come with some awful side effects if you do. Slow and steady improvement is best when coming from your situation.
Yes! I use Glooko often to look for trends. I also use mysugr to write notes and look for smaller details. I use MyFitnessPal and CalorieKing to track all of my food. Sometimes it can still be very frustrating though because I can respond two totally different ways to the exact same foods/stressors. It makes it difficult to track everything down and get ahead but I’m trying!
Thanks! I agree with you. I try really hard to avoid massive swings but I honestly believe I am both hypo and hyper unaware. I feel totally fine at 50 and at 600. . The Freestyle has helped so much though. I scan it around 50-60 times a day according to my data.
I have read Dr. Bernstein’s book. I enjoyed it but I prefer anecdotal tips from people living with DM now and how they are dealing with it. He is brilliant though!
As your control gets better you may regain your awareness of hypos and hypers. I think that those massive swings you were probably experiencing before would have made it really hard to distinguish between high, low and normal BG’s.
That’s a good point and is what my endo and myself are hoping as well! He finds it strange that I spent the better part of two years in the 600 range constantly and never had any sx.
I was thinking this as well. I remember a young man addressing a group of parents at Joslin’s family camp years ago. He spoke about how his bg had been maintained in the 300s for an extended period of time. He improved his control after attending Joslin camp and realized he had no idea he wasn’t feeling well when he was in the 300s, until he felt what it was like to feel well, and then he became much more aware of when his bg was out of range.
I found this to be very true as well. I spent a lot of time tracking my son’s foods, activity, etc., hoping to come up with formulas for each scenario. I was impatient. After a decade () and now seeing how Caleb handles things on a much more global scale, I can see that diabetes care is less a sprint and more a marathon. Maybe that’s not the right analogy - my point being, I’ve found we can’t look at things so much in small discreet scenarios, but we learn the body’s reactions more generally than specifically after a longer period of experience with them. The gut seems to work much better than the science I was trying to apply. So it may just take some time to see how your body reacts with a larger pool of data.
I love the mySugr app and use it pretty faithfully, spring for the paid version if you haven’t already. The reports are great and my doc loves to see them and puts them in my chart.
Get enough sleep. We’re all in short supply. It contributes negatively to a lot of chronic health issues.
Figure out what your good/bad food are and how they impact your blood sugars. This is trial and error-mySugar is great for keeping your food log and seeing the impact on your blood sugar a few hours later. Avoid foods that give you issues or eat them sparingly.
Make sure you have your carb coverage ratio calculated as well as your correction factor. These will change over time and often vary by day part (ie. mornings I need more bolus insulin than the rest of the day).
Pre-planning is the key for eating well. On Monday morning I bring a grocery bag of food with me to work-literally its my breakfast, lunch, and snacks for the week which helps me keep on track since the food options are limited near my office. Download the apps for all the restaurants you eat at so you have the nutritional info you need for insulin dosing. Try to eat at relatively the same time each day, if you can’t eat a full meal at your specified time at least eat a snack. Avoiding the blood sugar roller coaster helps you be more successful at managing diabetes.
Be patient with yourself. There will be days where it seems like your body is defying you or you go off the rails with your eating. It happens. Do the best you can in the moment, correct what you can, and tomorrow is a new day.
I am not an exerciser, but I am active. Even modest routine activity helps keep things moderated.
Sometimes it can still be very frustrating though because I can respond two totally different ways to the exact same foods/stressors. It makes it difficult to track everything down and get ahead but I’m trying!
That sounds like me when I started out. No matter how careful I was about weighing the food for carb counting or increasing basal temporarily for stress or exercise, my BG would go wherever it wanted to instead of where I thought I had sent it.
I solved it with two ideas. The first is the absolute basic advice from my CDE, who told me “If your blood glucose is too high, you need more insulin.” That sounds simplistic, and it glosses over all the details of basal and bolus, but many times I find myself going back to this as a way to cut through the confusion, so that I know what to do. If my BG is too high, I take more insulin to bring it down. Two notes here: I always have a tube of glucose tablets with me so that if I take too much insulin I can rescue myself. Because I have CGM and glucose on hand I don’t have to avoid “insulin stacking:” if my BG is too high I take a bit more insulin maybe as often as every half hour, then I watch what my BG is doing with the CGM. As the others said, if you get MiaoMiao to turn your Libre into a CGM that will help you stay safe, because it will notice and alert you when your BG is going out of range, even if you are asleep or distracted.
The second and most important idea that really helped me solve the problem was “sugar surfing.” I don’t try to predict everything up front to take the perfect insulin dose, because that’s just too hard. My body isn’t totally predictable. Instead, I take a reasonable insulin dose based on carb counting and what I know about stress or exercise or illness, and then I watch the CGM (or Libre graph) to see what happens. Is the BG still rising too fast or too far? Then I take some more insulin, because the graph shows that I need it. Is my BG falling when it should be rising or leveling off? Than I take some glucose to catch the fall before it becomes a hypo. The sugar surfing idea is to watch the CGM graph frequently, and make frequent small corrections with insulin or glucose to steer the BG in a good direction. One source of good instruction in this technique is from Dr. Stephen Ponder. He has a book called Sugar Surfing that gives lots of training in how to do it. (He also has a web site https://www.sugarsurfing.com/) The book gives many example CGM graphs with his explanations of what he sees in the graph and what he does as a result of that. This whole approach changes the game from “take insulin and hope that I did it right (but often I didn’t)” to “just keep making small adjustments with insulin and glucose to steer the BG in a good direction.” This way of dealing with it is comforting and effective.
) it can be very difficult to “fit” diabetes management in. I’m hoping with the help of this forum and insight into how some of you juggle everything in your life I will be able to do the same.
) and now seeing how Caleb handles things on a much more global scale, I can see that diabetes care is less a sprint and more a marathon. Maybe that’s not the right analogy - my point being, I’ve found we can’t look at things so much in small discreet scenarios, but we learn the body’s reactions more generally than specifically after a longer period of experience with them. The gut seems to work much better than the science I was trying to apply. So it may just take some time to see how your body reacts with a larger pool of data.