About two months ago I was diagnosed with a Gastro Intestinal Stromal Tumor on my stomach. I had surgery to remove it almost exactly 30
Days ago.
I have been a type 1 diabetic for approximately 10 years. When they reviewed previous CT scans, they concluded that I had had the tumor for at least 10 years.
I have had excellent control with MDI and pretty consistent blood sugar testing. A1c has never been above 6.4 and has been as low as 5.2.
The reason for my post is that about a week or so ago I noticed that my Blood sugars have been going down even though I cut my ratio from 12:1 to 24:1. This is because I didn’t want to find myself going low and not being able to keep down a correction (vomiting has been a side effect of the surgery). So, to play it safe I adjusted my insulin to carb ratio.
My food intake has been low due to surgery but I have been eating carbs. I was still going low. So, I stopped taking my Humalog when I ate and monitored my blood sugars. They still went low. Three nights ago I stopped taking my Lantus to see what affect it might have on my blood sugar.
I did not do this without reservation as I have been extremely diligent in my management of my diabetes and figured if my blood sugars started going up I could adjust with Humalog and restart my Lantus. However I did not want to go low in the middle of the night while I was asleep. So I weaned off the Humalog and Lantus.
So three days without Lantus and five or so days without Humalog and my blood sugars have been 90-146 (post meal). Crazy.
I just had a meal with about 70-80 Carbs. No insulin taken. Tested one hour after and I was 136. Two hours later was 124.
This really has me stumped. I am going to set an appointment with my Endocrinologist ASAP but wanted to ask the group if anyone else has experienced something like this.
My body is behaving like I don’t have Type 1 anymore. The GIST tumor showed up about when my Type 1 did. I was thinking that
In response to the tumor my body attacked it and those same things Attacked my Islet Cells? And now that the tumor is gone they are no longer needed and my Beta Islet cells are able to multiply and create insulin.
Crazy theory. It was curious if anyone else experienced something like this or have heard of it.
I hope you are cured from the tumor removal. When I had covid pneumonia my bg was crashing constantly, but no way could I have gone off insulin. I have been in dka and close to it too many times. And when I forgot to put my pump back on after showering during the illness it spiked a lot so I still needed it. But it was running very low, I had to drink several juice paks a day and eat more even with insulin adjustments.
It seems the tumor played a role in your diabetes. Did you have antibody testing etc for type 1?
I would ask your endo asap.
I met someone on instagram last year who is type 1 who has been off of insulin for several years with no anti rejection drugs after a trial in brazil. He first received chemotherapy and then a stem stell transplant. He still uses a dexcom, but no more insulin.
So I talked to my Endo today I don’t think she believed me when I described what was happening. She was worried about me not taking any insulin so She told me to take 5 units of Lantus a day and keep monitoring. She also told me that I didn’t need to take any Humalog with my meals if my blood sugars were not going up. . She didn’t even ask me to set an appointment.
I didn’t mention earlier that I lost about 30 lbs post surgery. Not sure what role that is playing in this but it could be.
Nice thing is that I am eating whatever I want without worrying about the carbs. I haven’t done that in over 10 years.
Tested about 10 times today. Was never over 130. Ate 3 protein bars with 20 carbs each. Drank three 30 carb protein shakes and had a large Jamba Juice and ate some honeydew melon. I took no Humalog.
Crazy.
Have an appointment with my GP on Wednesday to get his take.
Wow, very odd… and even more odd that your doc doesnt care, wtf? I would get another opinion. At least you can enjoy the bg for now, I hope it lasts🤗 please keep us updated… did you start the basal again? Does it crash you?
I started the basal again, but just 5 units per day of Lantus. BG is not crashing. Staying steady between 100 and 130 when fasting and going up to 160 or so after meals but coming back down without any Humalog.
Went in for some blood tests as a follow up on surgery and my Endo had ordered some tests as well. Not sure what they were yet but should find out soon. Just enjoying a non-low carb diet while I can.
