Untreatable: My Life With Chronic Sustained Lows
Editor’s Note: This week, Beyond Type 1 will be focusing on hypoglycemia and severe hypoglycemia during our Let’s Talk Lows campaign. We’re looking at causes, symptoms, fears and treatment options. Follow along using the hashtag #LetsTalkLows and share your hypoglycemia experiences with the community.
My friend always refers to them as the “come at me bro” arms, but more than the doctor’s raised hands and piercing eyes, the thing I remember most is the way he held the last syllable when he said “Do you want to diiiie?”
Complicated lows have been a part of my life since middle school. After decades of different teams trying to understand what’s going on with me, current research points to it having something to do with antibodies. There are many more questions than answers, but what we do know is that there are periods where I can be extremely low for extended periods of time, regardless of intense amounts of treatment. The thought right now is that something makes antibodies flare, causing my body to hoard insulin and then dump it all at once. The problem puts me in unfathomable situations that make no sense to anyone with Type 1 knowledge, then disappears as quickly as it came.
The “come at me bro” arms and “do you want to diiiie?” line came a few years ago. My blood sugar had been under 40 mg/dL for six hours, despite hundreds and hundreds of carbs, glucagon, and no activity. I was tired of sugar not working and wanted Dextrose. The urgent care clinic I went to didn’t have any, so I asked that same friend to pick me up and take me to the ER.
The doctor was in the middle of raising his voice, frustrated with me choosing to not take an ambulance. I was alert, standing, stable, and far too familiar with this situation to want an ambulance bill. I left feeling bad for irritating someone who was just trying to help but was also exasperated by the problem’s history and presence in my life. My friend and I drove to the ER. When we got there, I wasn’t seen immediately because I was standing, talking, friendly, and seemingly not in urgent need of medical help. They finally took me back when I showed them that my BG was 26. They pushed 50% Dextrose four times over two hours before I finally went above 100.
If you’ve never experienced lows like this, know that
- hundred of carbs usually makes you go wildly high
- glucagon usually makes you even higher
- pushing D50 once usually makes you skyrocket
- pushing it four times is unheard of
All of this is unheard of… Most times that I end up in an ER, I’m asked if I intentionally tried to overdose on insulin. The intensity of the case and lack of diagnosis makes everyone question everything. Most times, I also need to sign an Against Medical Advice form to be released, because to let me back into the world never seems like a safe enough decision for anyone to make. Both of these things rattle me, a lot. I know this is terrifying. I take it extremely seriously. My situation is complicated, mysterious, and in many ways dire. It’s something that I’m learning to process and handle as I grow with it.
“It’s weird for us to leave with you still at 35 mg/dL, but you really do seem fine.” said the paramedic, leaving my roommates and me in my living room after another AMA signature. When they arrived, my blood sugar was 21. After IVs, gel, juice, and leftovers from game night the day before, we were standing in the kitchen and waiting for my blood sugar to go high enough that they felt comfortable to leave. Both of my roommates are surgeons, so we killed some time talking about the coronavirus’s impact on different types of healthcare workers. When we tested again, I was up to 38. The conversation switched to mountain biking and the sugar switched to orange juice. Fifteen minutes later, I was back to 31. Over an hour into this, everyone realized that we could go on talking all night, but despite the fact that science says I should be passed out on the floor, I was fine. So with a BG of 35, they left, shaking their heads and understanding that my life with Type 1 is far stranger than most.
I go through seasons of ups and downs in handling this. The problems come in waves and the variables are endless. Sometimes it’s seizure after seizure and other times people don’t even know I’m in a rut. Sometimes issues flare up for a few days and other times I’m in and out of hospitals for months. Having the energy to fight for progress comes in waves, just like the problems do.
I’ve had appointments with chief medical officers of world-class institutions who scratch their heads and say they’ve never seen anything like it.
I’ve been fired from endocrinologists when I don’t accept their solution of “needing to continue to tweak basal rates.”
I’ve gotten e-mails from attendings with the subject line “Have you ever thought about a pancreas transplant or plasmapheresis?”
I’ve had physicians say the best they can do is pray for me. It’s a wild ride.
When I was in high school, I had an amazing mentor. She guided me on backpacking trips and was also a doctor. One night, she found me unconscious in our team’s cabin with a blood sugar of 23. I woke up shortly after and within twenty minutes was asymptomatic. As I drank endless amounts of juice and ate disgusting amounts of candy, we watched my blood sugar drop to 17. I remember so many vivid details: watching an adult try to hide a glucagon from my view as to not scare me, the sharp “what?!” I could hear through the phone when my mentor called her husband to give him an update, people asking me point-blank how I was still conscious. That night ended up being a paradigm shift for me. It made me realize that all of this impacted me mentally as much as it did physically.
Right now, I feel tons of support from the current team working to find answers. I’ve been able to put more effort into the mental aspects of it all.
What does it mean for me to be so desensitized to life-threatening situations? How can I support my friends when the stress that comes with being close to me can be so intense? How often do I disclose this to new people, when most of the time I’m fine, but sometimes I’m the farthest thing from it?
With a disease that has us be our own doctors so much of the time, its been a tough road realizing I won’t find a solution to this complication on my own. What I can do is work on making my life with it the best that it can be. It’s a process. One that will probably last a lifetime. I’m thankful to be along for the ride.
Educational content related to severe hypoglycemia is made possible with support from Lilly Diabetes (BAQSIMI), and editorial control rests solely on Beyond Type 1.