Hi, I’m 38 years old and was diagnosed with type 1 diabetes 4 months ago. My blood sugar was within the 120-180 range for the first 3 months on Novolog and Tresiba but for the past 2 weeks, I haven’t been able to control it and it has been mostly over 200. I go to bed at 170 and wake up with blood sugars over 200. I have become very stressed after starting on the Dexcom for the past 2 weeks. The falling rate on the Dexcom is terrifying for me. Has anybody experienced such high sugars for 2 weeks and developed a lot of stress from using the Dexcom? Thank you so much.
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Hello @sarah52 Sarah. Welcome to TypeOneNation and the forum. I think it’s really common for the first couple weeks after diagnosis to have great results. Many times with T1, your body starts making insulin again after you get diagnosed. Then in a few weeks or a few months, this ends and it makes control a little more difficult.
It’s time to go over your numbers with a doctor or CDE and it’s probably time to adjust food insulin and exercise. I know it’s a lot. I can promise you that you’ll be an expert after a while. Diabetes is an illness where you have to be your own primary doctor and you get no time off for good behavior.
As far as CGM, all CGM are quirky. Some people find they are too much trouble. Some people love them. Failed sensors should be reported to Dexcom so they send you free replacements. CGM readings are often”behind” actual blood sugar so if it says 200 and shows you are falling your blood sugar is likely less that the reading.
Don’t forget that you are recently diagnosed. Many of us have PTSD after diagnosis or a period of time where there is a lot of extra stress. Even if you took it well, getting diagnosed is a mental and physical trauma and it takes time and patience to feel better.
It’s always good to learn all about type 1,“ Think Like a Pancreas “ is a great reference book.
So welcome to our club and I hope to hear from you again!
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Thank you so much, Joe! I hope I can get through this stressful time and feel better again soon.
Just another question, if sugars are high in the morning due to dawn phenomenon, is using an insulin pump the only way to lower it?
hi @sarah52, once you are completely comfortable making your own insulin decisions, then you can correct your dawn phenomenon (morning insulin resistance) by increasing the amount of insulin at your first meal, by adding a little exercise, or by changing your morning meal… Getting your long acting insulin shot to be right overnight is one of the hardest things, but you can see your blood sugar when your CGM is working. Many people try to reduce morning blood sugar by starving themselves… this might work but it might make things worse. You can’t always predict when your liver will dump sugar and so sometimes not eating can cause higher blood sugar! While this may be confusing, it usually only gets complicated in the early morning with the rest of the day a little easier to predict…
I try to keep it simple, so the way I see it is like this: insulin and insulin + exercise makes your blood sugar go down, carbs make your blood sugar go up. your target is tiny so don’t get discouraged. I’ve been doing this for over 40 years and my blood sugar swings. a simple mistake can make me 30 mg/dl or 390 mg/dl. than number is NOT a “score” it’s not an indication of if you are doing a good job… it’s a suggestion and a clue as to what you need to do next.
so the short answer is no, an insulin pump is not an “end all” solution and many people are fine on MDI. You can make ANY therapy work if it works for you. Friendly advice is to not bend your life around diabetes, but rather, bend your diabetes therapy around how you want to live your life. you can do it and we are always here.
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@sarah52 Hi Sarah, and welcome to the JDRF TypeOneNation Forum! I hope that here you will find much useful information and also “meet” many other people with diabetes who will offer you the comfort that you are not in this a;one. Also, you may read some “conflicting suggestions” because the same insulin protocol does not work exactly the same way in all people. @Joe has offered you some very useful suggestions, I hope he helped expand your knowledge.
To answer your concluding question, my DexCom sensor device DID NOT give me any stress, but rather gave me comfort and understanding. To put this in context for you, I began using my first DexCom CGM 61 years and 18 days after my diabetes diagnosis and had been adjusting my insulin primarily on my own for more than 55 years. It is possible, that your “stress with the DexCom”, might be your new awareness of how your body glucose levels can fluctuate - spike after food, and bottom-out when insulin or activity takes effect.
My DexCom G5, and now G6, were an eye-opener for me, and now I have FINALLY been able to better manage the all-to-evasive balance between food, activity, and insulin; although I had good over-all glucose levels with the HbA1c AVERAGE around 6% for many years, my fluctuations were ridiculously wild.
May I suggest, Sarah, that you try not letting your DexCom be your judge “telling” that you need to do better, but rather you use the data to help guide. A further suggestion, live life fully with diabetes and do not let diabetes rule your life. True, diabetes management is a 24/L thing [L = lifetime], but within a few years you will slowly become aware that you are the boss.
Thank you so much for all the very helpful advice, Joe and Dennis! I’m so glad I found this forum. I’ve also lost a lot of weight since my diagnosis (104 lbs, 5’8") and struggling to put on weight. My high morning sugars and throughout the day are making it very hard for me to eat enough carbs and calories to gain weight. Has anyone experienced such extreme weight loss and how they gained it back?
Hi @sarah52. Many years ago I changed doctors. From our initial visit - where he took his time to get to know me - he believed I needed to lose some weight (true), get regular exercise (true - mine was sporadic at best) - and he believed my daily insulin was a bit high for a woman my age/height/weight. Of course we know our needs vary by individual, but doctors use certain guidelines as a starting point. I think he wanted to start by tweaking my basal rates, and I added that I could work out more frequently at the gym. At that point he said to hold off - while my intentions were good it would be best to adjust one thing at a time so I would understand its effect.
So I would suggest you address the high BGs first. Your doctor may want to tweak your basal insulin, or change your insulin/carb ratio. As you become more experienced you’ll learn to make adjustments on your own; but since you are very new, you will need to do it under doctor’s supervision. I download my pump (my CGM receiver) and share it with her office so she knows my settings and my readings and can make recommendations accordingly without me having to go to the office (very helpful now).
Weight loss can be a warning sign of diabetes, so now that you you know, getting your numbers in line may help.
Using a CGM can be intimidating, and it can be easy to panic when you see those arrows, or certain numbers (particularly if they are a little high). I would see those arrows rising after I ate, and while I had calculated my insulin correctly seeing my numbers rise made me panic and I would take an extra unit. Later on guess what? The arrows were trending down because I had taken too much. I’m not saying that’s what you’re doing, but using it as an example. Ultimately my doctor told me not to take any additional insulin (unless I ate more) for 2 hours - I wasn’t giving it time to work in the first place, and adding to it wasn’t helping. Lo and behold, my numbers were lowering a bit two hours later. BTW, 2 hours was my time - yours may be different.
It’s easy to panic when you see those arrows. It may be that your fingerstick calibration and your CGM were off by several points for some reason and the CGM is adjusting. And I find of I don’t calibrate my G5 at meals and bedtime it gets off track. It’s a good idea to do a fingerstick of you haven’t already, to see where you are and if you need a snack. Remember, the CGM is a tool and you have control.
Hi Sarah,
I’m always interested to hear from an LADA type 1. I was diagnosed at 42 YOA (now 54) and had some similar experiences. I have only had my Dexcom 1 year now.
I struggled with my glucose level for those first 10 years. The “rollercoaster”. I followed the ADA “recommended” diet of whole wheat pasta, organic food, fruits, etc. And I continued on the frustrating and stressful roller coaster.
My A1C was always in the 8s.
What made the difference for me - and I mean a life-changing difference - was coupling the Dexcom with a low carb diet. I still eat very well but now have cut out the brown rice and pasta or breads (that are so highly recommended by the experts). My A1Cs have been 6.0 and 6.2. It was an immediate BG change for me.
As a caution - without the Dexcom (or any monitor probably) I could likely be dead. I run low blood sugars fairly frequently (60s and sometimes 50s), but because of the Dexcom I am aware of what’s going on and often can get in front before I go low. And if I go low it warns me.
Because of the decade without my Dexcom I am practically in love with it now. Being able to know my BG at any time has taken the stress away. I know where my BG is always - that’s calming. I can see where it is going. I have learned what different foods do to me.
Would you rather not know where your BG is? To me that’s more stressful.
We all have our own stories. We are commonly unique.
Just don’t lose hope. You are definitely not alone. There are many of us with similar experiences. For me, I’ve learned not to worry too much about what my level is at any moment and try to focus on the big picture.
Hi Sarah @sarah52 , weight gain, or should I say, gaining weight has always been a concern for me; last year, the cardiologist I’ve been seeing told me he would like to see me gain another 10 or even 15 pounds. I’ve been able to add 5 pounds through resistance training at the gym; muscle weighs more than a like volume of “flab”.
Insulin, as you may well know, is a growth hormone. As you experiment and learn how to manage those high BG readings that have you concerned, you may be able to “add” some additional foods to help you put on weight that you desire. Another thought on getting your food/insulin balance in line, is that a little increase in insulin may allow your body to better assimilate the foods that you are now eating - without insulin, your body can not utilize the nutrients [and sugar] you eat and those ‘good’ things stay in the blood until eliminated through your kidneys.
A very strong caution I offer, is for you to avoid “insulin stacking”, and that any change in your insulin dosing be done with extreme caution. If possible, talk with a good diabetes educator / doctor who has diabetes.
When I first started on my dexcom it was the g4. Yeah, I used to get alot of anxiety by watching my sensor. When you see the arrow straight up and rising quickly you basically have to let it do it’s thing as I find that when I’m rising it usually comes down quick, especially if I’m exercising.
Yes I totally understand what your going through. Although I am not newly diagnosed I have always had my numbers dramatically change overnight and my endocrinologist has worked hard with me to correct my basal intakes
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Hello @Adler13 welcome to our forum!
Thank you glad to be here