From Santa Ana, California, USA:
My 16 year old daughter had a sudden growth spurt (1 1/2 inches after no growth since age 12) that occurred at the same time as a very strange disorder. She stumped the doctors (even after a one month hospital stay with tons of testing) with her symptoms of temporal lobe pseudo-seizure (determined to be non-epileptic, involving rapid cycling and severe mood lability lasting up to 20 minutes, 4 to 6 times per day-fully conscious), severe Raynaud's phenomenon, numb, tingling extremities, very dilated pupils, tachycardia, nausea, severe headache, etc. Eventually the seizures became migraines which were typical in type (flashing lights, nausea, etc.) but lasted for minutes rather than hours.
After 5 months we figured out that these autonomic symptoms were occurring after eating (no symptoms during fasting) and she had a complete endocrine panel which showed C-peptide of 8.8, insulin of 126. She was diagnosed as insulin resistant, but she does not have PCOS [polycystic ovary syndrome, one cause of insulin resistance], has low cholesterol, is very lean, has low triglycerides, etc., so she doesn't fit the normal profile.
After 2 weeks on pioglitazone [a pill for Type 2 diabetes], she got worse rather than better (severe hypoglycemia and mood swings) so she is now on Glyset [a different type of pill for Type 2 diabetes] with every meal plus daily exercise and a very strict very low-carb, low-fruit, no sugar diet.
After a month on the diet and exercise, I see no change in the autonomic symptoms. Could she possibly have some other disorder that causes extremely high insulin and epinephrine reactions? The endocrinologist does not think she has an insulinoma because symptoms only occur after eating. We are very concerned because her symptoms are so atypical. We can't find another case with such severe autonomic involvement. Do you have any ideas?
It is impossible to distill all that happened in a month in hospital with 'tons of tests' into a few lines of e-mail so that there must be a lot we can't know about. It was easy to see how an insulinoma was considered even though it didn't explain many of the signs and symptoms. The insulin level was certainly high for a fasting specimen; but not strikingly so if it was random and the hypoglycemia seemed to be pioglitazone induced. Perhaps a better fit for this unusual galaxy of symptoms and signs would be an upper gastrointestinal carcinoid even though there seems to have been no diarrhea. This is a rare and sometimes benign tumor; but there are a number of new tests that can be used for its detection like plasma chromatogranin A or urinary 5 hydoxyindole acetic acid, and some more complex ones like endoscopic ultrasound and imaging with special radioisotopes like somatostatin receptor scintigraphy. I would have thought that if the puzzle continues and this possibility has not already been dismissed this might be worth following up. These are rare tumors however and it may be hard to find a center that is familiar with these procedures.
Original posting 16 Jul 2000
Posted to Other Illnesses
Last Updated: Tuesday April 06, 2010 15:09:12
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