Well, reading through the thread, it seems like I am in good company here. If you are triggered by downbeat stories, please stop reading now. It seems like I am coming to the end of a long fight. I’m OK with that. 22 years ago, I became very ill with something that infected my heart and nervous system. It left me with heart failure and autonomic nervous system damage. Passing out all the time and completely exhausted. It also appears to have caused a mutation in my mitochondria (The things that use sugar to make energy).
Moving forward in time to 17 years ago, I had episodes of severe pain in my right upper abdomen. Doc thought it was the gall bladder. I thought it might be Sphincter of Oddi dysfunction. It’s a small muscular valve the opens and allows bile from your liver and enzymes from your pancreas to empty into the intestines. Docs said they never test or treat for that until the gall bladder is removed and a quick internet search seemed to confirm that was the standard of medicine. Gall bladder was removed and everything got much worse (as would be expected with SoD). I started getting attacks of pancreatitis. The attacks come on with the consumption of more than about 10g of fat per day. At first I begged for treatment on the SoD, and then later to have something called an autonomous islet transplant surgery to preserve my beta cells. I was unable to get a doctor to do either. Without fats for calories…carbs took the place. I continued to walk as the only exercise I was capable of sometimes.
So over the next 9 years, my pancreas kept getting pancreatitis and slowly losing its ability to make insulin. Additionally, the mitochondrial mutation (likely) slowly made my body less and less able to actually utilize glucose regardless of my insulin production. I knew it was too late for the islet cell transplant to help now. I started noticing my blood sugars increasing in 2015. It took a year until I could convince my docs I needed diabetic medicine. Unfortunately, my other conditions made selection difficult.
Metformin gave me lactic academia, likely due to the mitochondrial disease.
Actos pushed me into heart failure. (Although for sugar control it was a wonder drug)
Docs won’t try (and I agree) DPP-4’s with my history of pancreatitis.
Glipizide was OK at first, but there is some concern about it speeding pancreas burnout, and it is barely effective now.
Farxiga had a good bit of effectiveness, but tends to cause ketosis, regardless of glucose or insulin levels.
After the first episode of a strong ketosis (not a true ketoacidosis, as my blood was not acidic), we stopped the Farxiga, but that necessitated my first go on insulin. We picked a long acting insulin (Lantus) but quickly found I needed 2 injections a day as I did not get all day coverage from it.
So for the last 2 years I have been on Glipizide, Farxiga, and Lantus.
A couple weeks ago, something went completely haywire. I started experiencing strong ketosis and my glucose levels are just all over the place. It is difficult to zero in the right amount of Lantus as I am getting hypos AND very high readings. (I had one pretty scary 390mg/dl, or I guess on your side of the pond 21.7). I will likely have to move to a short acting insulin now to try and bring this under control if I can.
I have doubts about this. I am on a non-invasive ventilator about 15 hours out of the day to aid with breathing. I have to eat when I am able to prepare food. Fat is simply not an option with my pancreas And even loading heavy protein…it turns to carbs eventually.
I have a theory supported by no medical science I can find anywhere that mitochondrial disease fostered diabetes is a different animal. If your cells are unable to convert glucose to energy, there is only so much sugar you can push into a cell regardless of insulin dose. My body simply doesn’t use it well. This is in agreement with years of metabolic stress testing stating my body does not utilize oxygen well either. It is not so much of an “insulin resistance” as a “glucose utilization” problem.
I have doubts I can keep to a feeding, testing, dosing schedule well enough to use short acting insulins. I can only do things when my body allows me to. To be honest, I have 22 years of history saying I hope this is coming to an end.