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NET - Insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)

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@marilyn2525

Hello Teresa,
To answer your question, I refer to my symptoms as classic because that is exactly what the Physician who diagnosed me said.
If I didn't eat frequently I would become nervous / scared, I would sweat and shake...inside and out. I believed I would soon faint or go into a coma. Eating and not moving much was how I managed to stay alive. I would rest as much as possible. I would tell my physicians and husband who is a physician how I felt, but no one took it seriously. I was very thin as a young person, at 45 I started to gain weight and began menopause. So to everyone including myself it looked like I was gaining and tired from menopause.
It was difficult to become over weight and try different diets and I did try to walk....but I just couldn't do it. I always felt it may have been due to a sugar problem and would ask my Dr. to please do a more thorough sugar test. On my last yearly exam my Dr. ask me why on earth I thought I had a problem as my Basic test show that my sugar is low, therefore I do not have diabetes or pre diabetes.
Two months later at Mayo...I'm told that " low sugar is a marker ". No one in 15 plus years ever suggested I see an endocrinologist.
Even an endo at Mayo who called me with results of my thyroid biopsy told me not to count on that diagnosis and ask me who told me I may have an insulinoma? I never told that physician to protect the other. My Dr back home told me it's so rare I doubt that it's true. To answer your question, I didn't know anything about the pancreas I never dreamed I would leave Mayo Clinic that week with an answer to the symptoms I had for so many years. It was the thyroid nodule and my weight gain that drove me to make an appointment with Mayo. No one ever suggested I go there. I came alone looking for an answer why I have the episodes when I don't eat.

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Replies to "Hello Teresa, To answer your question, I refer to my symptoms as classic because that is..."

I'm throwing this out there because I'm wondering if my problems may be due to a neuroendocrine tumor. Had intensive radiation and chemo for cancer 9 years ago. All was fine until 3 years ago when I lost 50 pounds, developed GI issues, then double vision, nystagmus,then balance problems. Exhaustive work ups at Mayo with no malignancy found on imaging or bloodwork. Continue to battle to keep my weight stable-sudden extreme hunger every few hours with anxiety, worsening balance and eye problems if I don't eat. Thirsty and drink water continually.