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Insulinoma with left flank and back pain
So I’ve been having bad pain in my left side. I decided to fast to see if it was something GI related. After 48 hours I Ended up at urgent aid because I felt worse than I’ve ever felt and I used to fast a lot. They said they would run labs and let me know maybe I have mono.
I had a cup of bone broth and some electrolytes but decided to continue the fast. I start to feel horrible again. Day 4 of the fast I get my labs that show a glucose level of 51. I had a dr appt that day and she’s very worried and says she wants more labs( I had had a low blood sugar reading a few months before she was worried about but never followed up.)
Anyway end up in the ER that night with glucose of 53. They run lots of labs and have me drink Apple juice and give me IV fluids. They do a non contrast CT (I’m very allergic to dye) of chest, abdomen and pelvis and nothing pops up so they say I’m good to go and to watch my blood sugar levels. Then the results from my labs came in today. I had eaten about 2 hours prior and my insulin was 21 and c peptide was 7.5.
I feel prettt confident it’s Insulinoma but I have not really found anything that talks about the pain I’ve been having. Google just told me if I have pain it must be because it’s malignant and spreading. Has anyone ever had pain with Insulinoma? Left side and back? Is there something else it could be? What doctor do I see next?
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@paulitee: I want to comment on your self-diagnosed insillanoma vs. your symptoms. Your symptoms may be caused by another culprit. If I were you I would have an Abdominal CT scan searching for kidney stones or gallstones as the culprit of your pain. A KUB ultrasound would also reveal location and size of stone, tumor, etc. in the kidney/gallbladder/bladder including any obstructions within the tubes (gallbladder or bladder urethra).
I speak as a bilateral kidney stone patient who remembers the flank/back pain well. Once you have verified your problem there is medication to help you plus surgical procedure if needed. An experienced Urologist will give you guidance.
Best health to you… dbamos1945
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2 ReactionsI already had a CT of my
Pelvic area and a huge battery of other tests and they ruled out kidney stones. The pain is also significantly higher than where my kidneys reside. I had acute pancreatitis about 12 years ago and it’s the same pain I experienced then but my pancreatic enzymes are completely normal
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3 ReactionsHello @paulitee and welcome to Connect
I would agree with @dbamos1945 in strongly suggesting that you do not self-diagnose using Google or other internet platforms. This method of dealing with health issues causes anxiety, and it is not generally accurate. I would, however, suggest that you obtain a referral to an endocrinologist (they specialize in blood sugar issues) and possibly a doctor specializing in pancreatic disorders.
In the meantime, Connect has several discussion groups on the topic of Insulinoma. Perhaps you would find these posts from people who have been diagnosed with Insulinoma (by a doctor) helpful. Here are links to two of those discussions:
--Diagnosing or Ruling Out Insulinoma--
https://connect.mayoclinic.org/discussion/diagnosing-or-ruling-out-insulinoma/
--NET Insulinoma
https://connect.mayoclinic.org/discussion/net-insulinoma/
I understand how frightening it can be to have symptoms that cause you discomfort. It may take a while to find the correct diagnosis, so I encourage you to be patient as you work with your medical team.
Would you be able to ask your PCP for a referral to an endocrinologist and/or a pancreatic specialist?
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2 ReactionsWell I met with my Dr today who said she strongly suspects insulinoma based on my c-peptide and fasting glucose levels. She ordered an MRI with contrast for today and referred me to an endocrinologist. So hopefully I will have some answers today or tomorrow
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3 ReactionsMRI seems like the next step to take. Laying still that long is kind of stressful, but bearable. 45 minutes to an hour but seemed longer the first time at least.
My insulinoma didn't cause any pain, I had low glucose, disorientation, fatigue and sweating. CT found it, mainly as it had spread to the liver (since than I have had occasional pain in that area, right side).
You may have an insulinoma even if it doesn't show on the CT scan. Even a very small one can make enough insulin to cause problems.
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