What are your your thoughts?

Posted by beth71 @beth71, Apr 28 5:44pm

I'm feeling like MDs are trying to make my square body fit in a round hole. I had a gastric sleeve back in 2017 and have been on high-dose steroids for 10 years. I discovered that my body producing excess insulin in Nov 2022 due to crazy night sweats and validated low glucose in the upper 40s. I have fasting hypoglycemia and have to eat pudding in cornstarch nightly to try to keep my blood sugars up during the night, but dropping again between 0300- 0500. During the day, my bs drops to 50's with in 1.5-2 hrs. post meals, but sometimes by the time I leave the table. Endo is saying that it is due to insulin resistance and Reactive hypoglycemia. Before all of this, my bs did not go above 180 after meals and my highest A1C was 7.2, now upper 5's- low 6's. Trialing Ozempic to see if it would help regulate my glucagon release with insulin surges, but my low bs have worsened. Now want to try Mounjaro, but it is a complete exclusion from my insurance plan.

Any thoughts? From what I've read, Reactive hypoglycemia typically occurs 3-4 hours after meals and it does not cause fasting lows.

Other causes for excess insulin are insulinomas (neuroendocrine benign tumors) Very small and often missed on imaging. Another cause could be abnormal pancreatic cells.

Thanks for sharing your thoughts.

Beth

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windyshores | @windyshores | Apr 28 6:45pm

Are the steroids causing this? (My kid was diagnosed with type 1 diabetes while on steroids, at age 4. The diabetes receded when she went off the steroids but came back. The steroids revealed what was coming anyway.)

Before bed do you eat a snack with fat and protein as well as carbs? That can help some people. Peanut butter, even ice cream is relatively slow. Fast acting carbs give me lows a few hours later so I have had to start eating differently.

Just some thoughts that may not fit for you!

beth71 | @beth71 | Apr 28 7:04pm

Thx for the tips Windy. The steroids are what they feel are contributing to my ? insulin resistance. I've been eating chocolate pudding with added cornstarch and protein powder at bedtime for over a year now. I'm concerned as the number of lows does not make me feel well and in the long term can contribute to cognition and even put me at increased risk for dementia. I already have struggled with memory and word selection.

The only symptoms that I have in common with these conditions are those for low blood sugar. Patients with these conditions are constantly hungry, but I am NEVER hungry.

I just feel like they are wasting time trying to make me fit one of those conditions and not looking further into one of the conditions with my pancreas. My labs are +, imaging negative, but that is very common for insulinomas as they are VERY small. There are a couple of more specific Nuclear Med Imaging Modalities that have not been done yet. They often are not discovered until the MD palpates the pancreas in the OR.

MDs like to label patients with the first "easy" diagnosis they come by. Just concerned it is doing me (and many others) more harm than good in the long run.

Beth

Cheryl, Volunteer Mentor | @cehunt57 | May 7 5:38am

These diagnostic labels surely seem confusing and conflicting! I’ve always heard that steroids have side effects of increased blood sugar (not low blood sugar). You’ve been told that the steroids have led to insulin resistance? That is usually associated with diabetes (not hypoglycemia). I’ve had diabetes for 50+ years and have experienced the flip side of the hypoglycemic low blood sugars that you have. It is scary and dangerous. I’ve met a few people in my life that were diagnosed with hypoglycemia but haven’t really heard of reactive hypoglycemia. I was surprised to find that folks with hypoglycemia had to follow diets similar to mine with the focus being protein and fats, while limiting carbohydrates. They told me that consuming carbs caused a reaction of the body producing too much insulin. Is that where the term “reactive hypoglycemia” comes from? This was nearly 45 years ago comparing diagnoses and dietary considerations with people I met during college and graduate school. Do you have an endocrinologist that you trust? Has that provider done anything further towards figuring out these diagnoses and recommending helpful treatment?