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NET - Insulinoma

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

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@hopeful33250

Hello @marilyn2525

I'm so glad to hear that you are doing so well and that you found such great help at Mayo. Mayo Clinic is a remarkable place and you certainly can attest to that!

You mention that your symptoms were "classic." If you are comfortable doing so, could you please share what those symptoms were? Also, were you aware of any pancreatic problems prior to the diagnosis or was it only the thyroid problem that brought you to Mayo?

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Replies to "Hello @marilyn2525 I'm so glad to hear that you are doing so well and that you..."

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.