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I need ideas for an issue I'm having.

J

JJTrey3

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Hi,

I'm new to this forum, but I've lurked here and there for years. Out of desperation I created an account to ask for ideas/help. Anyway, here's the story:

I went a decade without having a hypoglycemic seizure. But within the last few months I have had two, both occurring at night while I was asleep. I am also experiencing periods where I am unresponsive to insulin for several hours followed by prolonged hypoglycemia 4 to 8 hours later. The seizures and this pattern are certainly related, but I do not know what is causing this to happen.

I tested positive for insulin antibodies, but my endocrinologist refuses to treat me with corticosteroids. She says that they are only prescribed for people taking several times the amount of insulin I use (which is between 40 to 50 units/day). I am hesitant to push the issue because now is not the best time to be on an immunosuppressant.

The only thing I've found that makes any difference to help maintain stable glucose levels is to fast. Is there something I'm missing? Is it as simple as the antibodies interfering with the insulin? Or could something else be causing this? If anyone else has experienced something like this I would love to hear from you. I'll take any help or ideas I can get with gratitude.
 
JJTrey3 said:
Hi,

I'm new to this forum, but I've lurked here and there for years. Out of desperation I created an account to ask for ideas/help. Anyway, here's the story:

I went a decade without having a hypoglycemic seizure. But within the last few months I have had two, both occurring at night while I was asleep. I am also experiencing periods where I am unresponsive to insulin for several hours followed by prolonged hypoglycemia 4 to 8 hours later. The seizures and this pattern are certainly related, but I do not know what is causing this to happen.

I tested positive for insulin antibodies, but my endocrinologist refuses to treat me with corticosteroids. She says that they are only prescribed for people taking several times the amount of insulin I use (which is between 40 to 50 units/day). I am hesitant to push the issue because now is not the best time to be on an immunosuppressant.

The only thing I've found that makes any difference to help maintain stable glucose levels is to fast. Is there something I'm missing? Is it as simple as the antibodies interfering with the insulin? Or could something else be causing this? If anyone else has experienced something like this I would love to hear from you. I'll take any help or ideas I can get with gratitude.
Click to expand...

Hi JJ, I'm afraid I just wouldn't know how to help you but wanted to say welcome and others will be along with some ideas, I'm sure. In the meantime, could you tell us your normal daily regime, ie meals, glucose levels, how much insulin per meals, exercise etc. I think it helps people to come up with ideas as we are all so very different. x
 
Hi and welcome. Yes, can you give us some clues as @KK123 has asked. Why are looking to use steroids for treatment? I'm not saying it's wrong but I've never seen steroids mentioned on these forums or elsewhere to treat T1 issues. The antibodies, presumably GAD or one of the other less common ones, aren't normally treated directly but insulin is used to overcome the lack of it thru damaged beta cells. The 'standard' ways of treating T1 are typically the use of Basal/Bolus insulin thru injections or pump, carb-counting the amount of Bolus at mealtime, having a CGM, regular testing and avoiding being overweight and therefore being insulin resistant as well. Unless you are unlucky getting the balance of these right should minimise any serious hypos. There are exceptions as usual and you may be one of those and hopefully the endo can help
 
I typically get up for work around 6:30 am with a normal glucose level. I eat a protein (eggs, sausage, crackers with almond butter, etc.) heavy breakfast with coffee. I bolus for the coffee and then work until around noon where I take a break for lunch. My glucose levels during this time are still normal.

However, it is at this time that my glucose levels steadily rise regardless of what I eat (or eat at all). I usually eat small meals at lunch (less than 30 carbs total). I also attempt to arrest the rise with short bouts of medium to high intensity exercise. This works temporarily, but by dinnertime my glucose levels are elevated. I attempt to counteract this by pre-bolusing for dinner so as to avoid a glucose spike. However, this does not work and my glucose levels an hour after dinner are between 250 and 320 mg/dL. They stay at this level for about 4 hours and then the drop starts to happen.

Over the course of 2 to 3 hours my glucose levels will drop to below 70 mg/dL. This happens after bedtime and is when I am having my seizures. If I lived alone without a continuous glucose monitor I very well could have died sometime in the last few months since this started happening.

I use a tandem tslim x2 with a Dexcom G6 and novolog fast acting insulin.
 
JJTrey3 said:
However, it is at this time that my glucose levels steadily rise regardless of what I eat (or eat at all). I usually eat small meals at lunch (less than 30 carbs total). I also attempt to arrest the rise with short bouts of medium to high intensity exercise.
Click to expand...

Hi JJ. The first thing I spotted was your attempt to arrest the rise with short bouts of medium to high intensity exercise. This is likely to make you go higher whether you've eaten or not. In fact, one of the tips I was told to make sure levels didn't go LOW at the end of exercise, was to run as fast as I could for the last 3 minutes. I initially thought eh?, tried it and yes, it WHIPS up immediately. You need to test it out yourself of course but generally, a more gentle period of exercise is likely to lower it. If I walk for ten to 15 minutes on my treadmill after a 30g carb meal, my levels drop rapidly. Of course that doesn't address why (even without exercise???), your levels rise at lunchtime or your seizures which sound terrible. I'm afraid I know nothing about your pump (is it???). x
 
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