Hi Laura ,
Thanks for writing back and being so welcoming. I’ve been writing on here and most of the time I feel like I’m complaining or sound like a crazy lady It’s just so much to think about at times. If I bolus insulin do I have to make sure I’m eating a lot at meals. Because sometimes I just want a yogurt and maybe piece of fruit. So I would figure out the carbs in the fruit and the pump administers? What if I get too much insulin ? Would the dr take me off the nighttime tresiba ? Also my dexcom sensor is so off from my blood sugar readings. Any idea what to do. I drink very little during the day. Never thirsty so I remind myself to drink water. I read being hydrated helps readings ? Sorry so many questions. I guess when I have a better understanding of how things work I’ll feel better.
Hi Laura ,
I’m going to look into changing my endo. I hardly have any carbs at my meals bec I have limited myself so much. I haven t had bread or fruits. It’s usually a protein and a vegetable. Theni snack on almonds and walnuts. It’s encoraging to hear that I can eat more of a normal diet. Maybe this is why I just don’t feel right. I want to discuss my options with another dr. Is your dexcom 6 accurate? My readings are way off from my fingersticks and I am so disappointed bec I was hoping I could use it as a sense of security. I live alone and dr scared me of getting lows when I was first diagnosed
U are not alone. I was diagnosed type two at age 57. It wasn’t until I was 70 that the diagnosis was verified as type one by blood test. I have been on insulin from the beginning. I also have a Dexcom. I am now 75 and consider myself very healthy-thanks in part to the support of this group. So, don’t hesitate to ask questions!
Take some time to get to know your body. Everyone is different. You will have a rougher time than most of us, for a while, while honeymooning, because your results will be more variable. I wouldn’t sweat the 200’s too much. You seem to be making a strong effort. The foods that work for you may change over time, so dont be afraid to experiment. Oatmeal might not be a good fit today, but in three months, perhaps it will be a great morning meal. This stuff changes around.
For me a drop at night meant I had too much long acting insulin. It doesn’t matter what you eat during the day, it’s too strong at night. By bolusing for your meals you hopefully control the amounts you need better. You just need insulin for every carb as a type 1, but in the honeymoon phase you don’t need it for every carb and not as much insulin as long term type 1’s do. Because you still make insulin, and it can vary! So it takes a little work to figure it out and to keep figuring it out! Too much insulin makes you drop too much.
There is a difference in endos! I refused to go back to my first one after 2 visits!
Hi BSE, When I switched from Tresiba to the Omnipod insulin management system (I still have a hard time with the word ‘pump’ ), the basal delivery amount is super low (and mimics what my pancrease should be doing) I was much happier with my numbers. I’m still in the process of tweaking the basal delivery, but I feel better, and as I watch what my Dexcom G6 tells me I’m actually learning what the slow declining BG feels like. I’m also able to add things back into my diet that I had eliminated - even some oatmeal
I’m also able to calibrate the G6 with the numbers that the Omnipod gives me (I still check with a finger stick every other day or so- or when I change my sensor). My numbers between the 2 devices aren’t exactly the same, but they are close enough that I’m confident in them.
I was also super impressed with the Omnipod rep (at my endo’s office) who helped me set up the system.
Be patient with your progress, the learning curve is steep.
I’m so glad you found this forum! I was dx at age 56 as well and am now 59. Reading your posts brings me back to that first year after dx and I have tears in my eyes. Tough time.
The first thing my endo did was set me up with a diabetes educator and nutritionist whom I saw weekly. Those two people will guide you through this time. Endo’s are pretty useless in this area. You should not be on your own right now.
My pre-D diet was similar to what you describe, steel cut oatmeal, no processed foods, fruit, etc. Post-D I eliminated oatmeal, bread, pasta, etc. I use fruit to adjust blood sugars. For the first year or so I logged EVERYTHING I ate and every insulin dose. I had a column for calculated carbs and saved my notebook for the recipe carb calculations.
My retirement hobby is an organic produce farm that includes fruit. The first year of D was very punishing for me. Like you, I eliminated almost all carbs including fruit, so what I grew I didn’t enjoy. I got a t-slim insulin pump that I resented and strongly detest to this day. I put that aside a year or so ago. I would suggest waiting to commit to a pump until after much research and more time working with D. Whenever I think of that pump I think it ruined my life for an entire year.
Like you, I use Tresiba for basal. For mealtime and corrections I use Afrezza inhalable insulin. I also have a Dexcom CGM and would never willingly part with it. It is my security blanket and the best aid for making insulin/carb micro adjustments.
I am so sorry that you have to deal with D. The people on this forum are fabulous. Lean on them and learn from them. But please, insist on seeing a diabetes education and dietitian.
Patience is definitely the key. Easier said than done. When anyone tells me to have patience, i tell them that “patients is for doctors!”
As far as the G6 goes, I came from a G5 and while there are issues, the benefits far outweigh the negatives. The biggest benefit for me was the nearly complete lack of the need to calibrate. Now if they could just fix the tape adhesion problem, we’d all be happier campers!
Great feedback Bill
I can’t begin to tell you how good if feels to just know I can write to others that understand what I am going through. The other day I just broke down and cried on the phone to my sister for the first time because it just all became so overwhelming. Plus getting woken up at night bec blood sugars are dropping doesn’t help. I will try to find a diabetic educator I just feel like I don’t have a treatment plan and I feel lost and scared. I’ve been trying to navigate this forum on my cell phone but will go on my computer. I apologize if I have written things too long.
Hi I forgot to ask you how the insulin you inhale works and why you were so unhappy with a pump. I’m not familiar with either and I’m trying to learn what I can.
Here is video of using Afrezza.
I use it occasionally, since insurance does not cover, so use pump bolus most of the time. (I am happy with my pump, but Afrezza works much faster.)
You rightfully feel scared because T1D is frightening. You rightfully feel lost because your endo did not give you the support you need. If I were you, I would find a qualified endo who will then set you up with a diabetes educator and a diabetes dietitian. The educator is the one who will help you with a treatment plan. This person is available to you on a daily basis by phone and weekly by appointment. I don’t know your insurance situation, so maybe you need to move forward without an endo and find a diabetes educator. That is something you need to figure out. Your insurance company should be helpful and may provide names of educators you can see…
Take a deep breath and do whatever relaxes you. This is a difficult time but you will be ok.
If your blood sugars are going low overnight, reduce the Tresiba by a unit. It will take about 3 days to see a result from the reduction. If you still go low at night, reduce by another unit.
Thank goodness for your sister! It’s good to cry. I teared up a little in the doctors office facing my GAD antibody test that confirmed T1D. But I didn’t cry until quite awhile had passed. I’m not much for crying. But when I did it kinda felt good… justified. All your feelings are justified.
Over time you will learn about the action of the various insulins. You take Tresiba for basal (long-acting) insulin. Basal insulin works over a 24-hour period and is intended to mimic the pancreas in the “background”. There are basal insulins other than Tresiba and they all work a bit differently. I’ve tried most of them, and Tresiba works the best for me. Basal insulin does not cover the food you eat.
When you eat, a “short-acting” insulin will “cover” the food you eat. I don’t think you need a short-acting insulin at this point. You commented about a 200 mg/dl blood sugar after eating. It went back to normal after a period of time. That is good.
I take Afrezza to “cover” meals and to “correct” for high blood sugars. Afrezza is a "rapid-acting insulin that acts quicker and works better for me then other short-acting, meal-time insulins. Afrezza is inhaled and the other meal-time insulins are injected.
The only pump I have tried is the Tandem tslim. It has a tube that goes from the pump to an injection site on your body. The pump must always be connected to this tube to deliver a small amount of insulin to your body through the injection site at an hourly rate. When you eat you tell the pump to give you more insulin. The “site” must be changed at least every three days. My skin was very irritated from having insulin injected in one “site” over any period of time. Scar tissue develops so you must keep rotating “sites” but you run out of good places. People end up using breast tissue, buttocks, etc.
Sleeping with this device and the tubing was impossible for me. It got in the way of EVERY part of my life. Try to pull down your pants to go to the bathroom with a pump clipped to your pants that has a tube attached to your body through a “cannula” under your skin… If you PM me I can send you a photo. What a way to impress that you have a life-altering illness! And it’s expensive. The supplies and pump are usually considered durable medical equipment by insurance and coverage varies. My insurance is 20/80 and is considered very good coverage.
There are pumps without tubes. I think my experiences with various insulins and the pump have helped me understand what works best for me. Lot’s of trial and error. You have time to investigate and ask questions.
Thank you Lauri for the kind words and support. I’m going to look into a diabetic educator . It would be wonderful having someone available daily or weekly to guide me and answer questions. I too tested up after my diagnosis with confirmation of antibodies but haven’t cried until the call with my sister. I have Cigna insurance and they have been pretty good I am going to call and schedule an appt with a endo that was referred to me. Hopefully I can get an appointment. Thanks again.
I just saw your reply regarding the pump. I didn’t realize it was so involved. How do I PM you ?
Click on his avatar and a Message sign will pop up.
I use the Omnipod pump, it has no tubing. Just a pod you wear for 3 days and then apply a new one. I have had no issues with sleeping with it. I also use a Libre CGM sensor but am switching to Dexcom CGM Sensor because it will send an alarm at night if you drop too low.
The insulin pumps give you small amounts of insulin all day instead of once or twice a day of a long acting shot. That way you can lower the amount you get at night. Then you also hit a few buttons to give yourself insulin with food/meals. I love it. But it is tricky sometimes to qualify getting them. I had to keep a chart originally for 3 months and show I had lows to qualify. But then my pump and pods are completely free as durable medical supplies. I have to pay for the Libre sensors but I believe the Dexcom is mostly covered, I have a co pay for my insulin.
The trick is also whether you need it or not yet, as you go back to normal ranges with Tresiba, plus you aren’t using that much yet. That won’t always be the case down the road. But dropping the amount is needed to correct going too low at night. That might end up raising the day numbers.
It isn’t the same but works for me as a replacement for something warm and sort of grainy in the morning - I use a recipe I found with flax seed, chia seeds, hemp hearts and coconut milk to make a “no”oatmeal. I can send it to you if you are interested.
That would be great. Thank you ! I miss having oatmeal. Even 1/4 cup raises by blood sugar quickly for some reason and that is like two tablespoons lol.