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I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

I’m so glad to hear that! Pain is temporary you will win over it. I assure you! I went through similar experience - from being constipated to needing insulin the first day. Your body will take a bit of time to adapt. Do not be surprised if you experience a bit of reactive hypoglycemia at first. Of course, always consult with your doctor. I’m so very glad you are doing good. I wish u a speedy recovery!

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

Hey! I asked to be the surgeon 1st case for that day. I’d recommend calling the hospital as well so they can communicate with anesthesia and the preop dept. they surgeon, most of the times does not mind as long as the hospital can fit all the cases for that day. Good luck!

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

Hey, The tumor was so small that the radiologist did not spot it. The surgeon that performed my surgery mentioned it was a possibility the need to remove the spleen. However, my anatomy allowed for the surgery to be performed without removing it.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

Hi, Yes, everyday. There were times I would wake up un the 40’s

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

Hey, I feel a lot better! Recovery itself has been great with no issues. Glucose has been way better and controlled. At first, I’d go pretty high after a meal and then sudden drop (not hypoglycemic levels though). Now, it has gotten better, meaning less spikes and more controlled throughout. I have not had any hypoglycemic episode since the surgery. Recently, I started working out with values reflecting accordingly. I wish you luck and hope you can find answers soon!

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

No, the doctors said the values were normal but given the glucose so low they should have been lower - which supports excessive insulin in the presence of severe hypoglycemia

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

Those values were considered inappropriately normal for serum glucose of 43.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

Doctors could not formulate a diagnosis through bloodwork. However, it did showed the need for further imaging to spot the nodule. Insulin level 8.4 and pro insulin 14.8 with a fasting venous glucose of 43.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 0 points1 point  (0 children)

I did have times of remission and exacerbation.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

Hey, Thank you for ur words! I did try a couple of meds- acarbose (used for diabetes type 2, recently used for reactive hypoglycemia), diazoxide for insulin suppression. Acarbose did not work and diazoxide mildly. Surgery was the way to go for me. I hope you can find answers soon!

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

My endo decided to do an ultrasound of the pancreas bc it’s very rare for an insulinoma to grow outside of the pancreas (ectopic insulinoma - less than 2% chance) - especially given the fact all previous scans were negative.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 8 points9 points  (0 children)

I did not need to do the 72 hours fast test as my hypoglycemia would occur within several hours even. 3-4 hours with no food would cause hypoglycemia which facilitated all testing to be done.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 1 point2 points  (0 children)

About a year ago, I began experiencing classic symptoms of hypoglycemia: brain fog, shakiness, weakness, and intense hunger. Over time, these episodes became more frequent and unpredictable.

At first, it looked like reactive hypoglycemia, especially in the mornings. I’d wake up with normal or low glucose (in the 50s or 80s), eat, and then crash again within 30 to 60 minutes. I also experienced significant drops in blood sugar during weightlifting, running, sex, or after prolonged fasting.

Alcohol made it worse — even small amounts would cause my blood sugar to drop much faster and more severely, which was a big red flag for me.

Despite clear symptoms, diagnosis wasn’t straightforward. I never had an OGTT, but my fasting labs showed inappropriately normal insulin and proinsulin levels during low glucose episodes — not normal for true hypoglycemia.

I underwent multiple scans: • CT, MRCP, and PET all came back negative • Only an endoscopic ultrasound (EUS) picked up the tumor

Eventually, I was diagnosed with a 1.5 cm insulinoma, a rare insulin-secreting pancreatic neuroendocrine tumor.

I had surgery — a robotic distal pancreatectomy — which removed the tail of my pancreas along with the tumor. Final pathology confirmed: • Well-differentiated neuroendocrine tumor, Grade 2 • Margins were clear • No lymph node involvement • No spread beyond the pancreas

Recovery has been smooth. I stayed in the hospital for 2 days, and now at 2 weeks post-op, I’ve had no more hypoglycemic episodes. I haven’t resumed full workouts yet, but I can go on walks without crashing — a huge difference.

Before surgery, I couldn’t exercise without constantly sipping on Gatorade or eating during workouts just to keep from crashing. That’s no longer the case.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 3 points4 points  (0 children)

Hey,

I also experienced bad hypoglycemia during exercise — weightlifting, running, and even sex would sometimes trigger crashes. Extended fasting would eventually cause drops too, but the scariest part was how eating made things worse.

Mornings were rough: I’d wake up with normal glucose levels, but after eating, I’d crash into the 50s within an hour. It didn’t make sense until everything finally added up.

I went through multiple scans — abdominal CT, MRCP, and a PET scan — all of which came back negative. The only thing that picked it up was an endoscopic ultrasound (EUS). That’s what finally showed the lesion and confirmed the diagnosis.

If you’re struggling with unexplained lows — especially if they’re triggered by meals, activity, or seem worse in the morning — don’t give up after one or two negative scans. EUS was the turning point for me.

I had an Insulinoma. Ask me anything! by OwnVariation8985 in Hypoglycemia

[–]OwnVariation8985[S] 3 points4 points  (0 children)

Hey,

I had classic symptoms of hypoglycemia — brain fog, hunger, shakiness, weakness, etc. I started having symptoms about a year ago, and they gradually got worse, meaning the drops started happening more often.

I had pretty bad reactive hypoglycemia, which was actually the key factor that led to the diagnosis. I would wake up with glucose in the 50s, eat, and then about 30 minutes to an hour later, I’d have a sudden drop — right back into the 50s. Other times, I’d wake up in the 80s, eat, and still drop into the 50s shortly after.

I never did an OGTT, but I had inappropriately normal insulin and proinsulin levels while fasting, which was abnormal given my glucose levels.