Worsening Symptoms

Hi everyone.

I was diagnosed with Type 1 Diabetes 10 years ago (at age 8) and it has been a rollercoaster ride!

A couple years ago, I kind of gave up on managing my blood sugars and I still have pretty poor control. My bloodsugar is almost always high, and I’ve struggled a lot with my mental health and now PTSD from hypoglycemia and stuff, but that’s another story.

In June I went into DKA for the first time and it was really bad, I ended up in the ER. And in August I had a hypoglycemic seizure for the first time, also ended up in the ER. These both happened because I didn’t feel symptoms of my high or low BGL until it was already really bad (I have a Dexcom but I’ve learned to tune out the alarms which is definitely a problem). For example, in August I didn’t feel any low symptoms until like 60 seconds before my seizure and I had been on a walk with my friend and didn’t notice my alarm going off.

So I have a decent amount of hypoglycemic unawareness. Sometimes I feel the symptoms right away, but a lot of the time now I don’t. But now, when I do have symptoms, they are worse then they’ve ever been in the last 10 years. I have symptoms I never even had!

Same with highs. Now I’m starting to get some minor muscle pains, I’m so tired and delusional sometimes that I can’t even function, and it never used to be like this for me. And anyways, I just wanted to know if anyone else who has had T1D for a number of years has experienced their high/low symptoms worsening over time?


Hi @gimli and welcome to the forum. Some people on the forum have found it helpful to use one of the apps to get their readings and warnings - one person customized particular “military style” tones (my term) so they would be sure to hear the alerts. I use my pump for alerts so don’t know or remember which app it was, but hopefully people who respond will identify it for you.
You said you were walking with a friend and didn’t notice your alert before you passed out. If your friend didn’t hear anything either maybe turning up the volume would notify someone you’re with even if you don’t hear anything. And you can choose to share your Dexcom readings so someone can let you know if something is happening. You can set the Dexcom low glucose adjust the low alert for “as high as” 100. It would be nice to have it a little higher if you ask me but someone could let you know so you could take action.

Hi @gimli. Welcome to the forum. I have not had it as long as you. I am 18 and have had it for 3+ years, but I remember once I finally started seeing more time in range, I had more symptoms of highs at least. I also remember that in the very beginning, in range felt low, but that started to move down to actually below 70. Like Dorie said, maybe try to have someone else receive notifications from your Dexcom. I am not a doctor, but maybe you are being a little closer to the range and are beginning to feel higher and lower blood sugars again. I am sorry to hear about you struggling with mental health and PTSD. I have talked to others who gave up managing blood sugars and they have a similar experience in that they are usually high. You pretty much have to learn about your insulin needs and exercise needs and how foods affect you all over again. Consider talking with your doctor about your struggles if possible. I have very similar high symptoms to you and I always can tell when I am above 180 or so. Again, I didn’t feel highs in the beginning, so it may be that you are now spending more time closer to range and are now feeling your highs and lows.(still not a doctor and not medical advice, just experience) If you wanna talk more, let me know.

To echo what @fieldiez shared - there was a time when I spent a lot of time in the high zone. My new doctor recommended some changes that moved me to a more desirable range, but I complained I felt low (and confessed to snacking because of it). He said I felt low because my body was not used to those numbers, but I would become accustomed to them over time. He also assured me I wouldn’t pass out at 140 and told me to stop snacking unless my numbers were low. It took some will power but I did what he told me and got used to how those numbers felt.
You can always start over. If you don’t like your doctor find a new one and work with them to determine what works best for you. It’s not unusual to soak with a counselor to learn to manage the stresses of living with diabetes. Your doctor may have some names, or you could check the Resources tab to see what is available on your area.

I do have the app and my volume on my alerts are at the highest setting, but it often ends up getting muffled in my pocket or under my clothes or if I am near a lot of noise like traffic I’ll miss it. And I never wake up to the alarms, I did at first but now I’ll sleep through it - especially if I’m high and already feeling extra fatigued. I am getting a diabetic alert dog (his name is Gimli) in August so hopefully that will help me a lot, and I won’t feel as scared of going low and now knowing. I’ll also just feel less alone. My big problem right now is a part of me wants to get better but a part of me is so terrified of lows that I WANT to be high all the time, so I intentionally under dose or under correct. It’s just become a horrible cycle, and I know it’s bad, I can see that it is hurting my health. I have started to have some minor nerve issues and even vision issues, I know if I don’t get it together soon the damage will be permanent.

My pump is set to vibrate as well as make noise - I believe that’s am option for the receiver as well. I know what you mean about feeling tired when you’re high. I can be a deep sleeper as well and sometimes I miss the alarm and it’s the vibration that wakes me.
It may be a good time to check your basal rate/s and carb ratios - having those in place makes a huge difference toward preventing swings, although it’s not the only thing. Check with your doctor about how to do it safely given your history and your fears, but sometimes just a small change can make a big difference. Congratulations on advance on your support dog!
PS - there is now an inhalable form of Glucagon available - it’s called Baqsimi and it sounds much simpler to use than the standard Glucagon kits.
PS - your mental health and PTSD are not another story - they are part of the same one; and while you did not specifically mention depression in guessing that is one of your challenges. You didn’t say why you first stopped caring for yourself, but it’s not unusual given the nature of Type 1. There are people on the forum who share they did that; and I don’t want to speak for them but I imagine they started back up because they didn’t like the way they felt, and they realized life was worth living. I hope you find that, and if you are not getting counseling again I encourage you to do so. A support dog is great but “support” means s/he is going to work with you as you do your part.
I understand your fear of lows (don’t we all), but it’s not necessary to go to the other extreme to prevent them. And going high had its dangers as well. I really really really really really want to encourage you again to find a doctor (if you need to) who will work with you to find some balance so you can trust your ability to handle lows when they do happen (hopefully rarely) and maybe even reverse your hypo unawareness. Maybe there’s even a way for you to learn to recognize your CGM alerts again - and again I would definitely look into sharing your numbers for even more peace of mind.
Since you’ve written in to share your concerns it sounds like you want to make changes. That’s a positive sign - I hope you’ll keep us posted on how things go over time.

Hi, Zoe, and welcome to TypeOneNation! There are definitely posters on this forum who have been where you are, and kudos on the diabetes alert dog soon! I think those are all good signs: that you created an account and posted in the first place; that you’re getting a DAD; and that you recognize you’re under-dosing for fear of being low.

Like Dorie said, you can always start over. My grandmother used to say, “One day at a time. Some days, half a day.” And sometimes, even half a day is too big a chunk to think about. Maybe for you right now, it’s one dose of insulin at a time. So maybe you decide to look at your Dexcom, just this once. And then maybe you decide to dose using the ratio your endo gave you, just this once. Try it, and see how it goes.

Most important, talk with your medical team. Counseling can help. And keep posting. We’re all here for you.

1 Like