Hello all! I’m seeing my doctor in a few days, but there are a few things he’s told me are abnormal and I’m wondering just how abnormal/normal they might actually be.
24yo and BMI 22.8, so not overweight. Last A1C (3 months ago) was 13.6%, though doc says it should be several points lower now (more like 9%) based off my CGM.
The “abnormal” things:
1. I started developing insulin resistance years ago, and it’s gotten much worse (as shown by the high A1C) to the point where it’s starting to affect my triglycerides/cholesterol.
2. I take 50 units of Tresiba every day — my doc was absolutely floored by this. He said someone my age/weight shouldn’t require so much, and that I shouldn’t still be having so many hypers with a basal that high. Is 50 units of Tresiba really that high for someone my age/body type? Total insulin per day is 100+ units. I’ve heard of one person taking as much as 80 units of tresiba but they were T2, not T1, and didn’t take insulin other than that.
3. I’ve had somewhat low potassium for 5 years (if not longer) and my doc is concerned about it. It generally stays between 2.7-3.4 mEq/L.
4. My labs show that I’m making a very small amount of insulin antibodies (0.01 nmol/L) but my doc says that to make any at all is unusual and could be contributing to my insulin resistance. Lab reference range is 0.0-0.02 nmol/L, though.
5. Even though I’ve been T1 for 8 years, make insulin antibodies, and have terrible insulin resistance, I’m still producing a very small amount of C-peptides (0.3 ng/mL) which doc says is also unusual. He was expecting to see absolutely 0 and isn’t sure why/how I still make any at all.
6. One reason I struggle with staying in range is I’m both hypo/hyper unaware. I’ll be at 45mg/dL before I even start feeling low at all and have been 600mg/dL and higher without symptoms. I use a Dexcom CGM because manual finger sticks weren’t cutting it. My bg would look fine around mealtimes, but it was doing crazy things in between checks and I had no idea.
I know that’s all a bit of a mess, so I’m grateful if you’ve even just read this far. Does anyone else here still make C-peptides, produce insulin antibodies, have chronic hypokalemia, take a high dose of Tresiba, and/or have insulin resistance without knowing why? And for anyone who has insulin resistance and/or makes insulin antibodies, were you able to reduce either of those?
My doc really is great. He’s the first endocrinologist who didn’t immediately blame all of my complications on the assumption that I just don’t manage my diabetes at all, and instead gave me the benefit of the doubt and ordered labs to see if there was something else going on. I’m far from perfect at managing this, but I could never figure out why it seemed so much harder for me than for my friends/family with T1. I was starting to think it really was just me, but this doc makes me feel validated. My head is just swimming a bit because I’ve spent the last few years thinking I was managing it all wrong, and now I have some hope that I might be able to finally get this under control.
24yo and BMI 22.8, so not overweight. Last A1C (3 months ago) was 13.6%, though doc says it should be several points lower now (more like 9%) based off my CGM.
The “abnormal” things:
1. I started developing insulin resistance years ago, and it’s gotten much worse (as shown by the high A1C) to the point where it’s starting to affect my triglycerides/cholesterol.
2. I take 50 units of Tresiba every day — my doc was absolutely floored by this. He said someone my age/weight shouldn’t require so much, and that I shouldn’t still be having so many hypers with a basal that high. Is 50 units of Tresiba really that high for someone my age/body type? Total insulin per day is 100+ units. I’ve heard of one person taking as much as 80 units of tresiba but they were T2, not T1, and didn’t take insulin other than that.
3. I’ve had somewhat low potassium for 5 years (if not longer) and my doc is concerned about it. It generally stays between 2.7-3.4 mEq/L.
4. My labs show that I’m making a very small amount of insulin antibodies (0.01 nmol/L) but my doc says that to make any at all is unusual and could be contributing to my insulin resistance. Lab reference range is 0.0-0.02 nmol/L, though.
5. Even though I’ve been T1 for 8 years, make insulin antibodies, and have terrible insulin resistance, I’m still producing a very small amount of C-peptides (0.3 ng/mL) which doc says is also unusual. He was expecting to see absolutely 0 and isn’t sure why/how I still make any at all.
6. One reason I struggle with staying in range is I’m both hypo/hyper unaware. I’ll be at 45mg/dL before I even start feeling low at all and have been 600mg/dL and higher without symptoms. I use a Dexcom CGM because manual finger sticks weren’t cutting it. My bg would look fine around mealtimes, but it was doing crazy things in between checks and I had no idea.
I know that’s all a bit of a mess, so I’m grateful if you’ve even just read this far. Does anyone else here still make C-peptides, produce insulin antibodies, have chronic hypokalemia, take a high dose of Tresiba, and/or have insulin resistance without knowing why? And for anyone who has insulin resistance and/or makes insulin antibodies, were you able to reduce either of those?
My doc really is great. He’s the first endocrinologist who didn’t immediately blame all of my complications on the assumption that I just don’t manage my diabetes at all, and instead gave me the benefit of the doubt and ordered labs to see if there was something else going on. I’m far from perfect at managing this, but I could never figure out why it seemed so much harder for me than for my friends/family with T1. I was starting to think it really was just me, but this doc makes me feel validated. My head is just swimming a bit because I’ve spent the last few years thinking I was managing it all wrong, and now I have some hope that I might be able to finally get this under control.
