Personal story
When the diagnosis is missed
This site grew from the experience of trying to make sense of symptoms when the usual tests were normal and
the usual diagnoses did not quite fit.
One example: fainting, normal tests and insulinoma
The journey started with fainting and symptoms that seemed cardiac or neurological. A cardiologist found the
usual tests normal. A neurologist also found no clear answer. Two endocrinology opinions did not reach the
diagnosis. The eventual answer was an insulinoma, a very rare insulin-producing pancreatic neuroendocrine
tumour. During documented hypoglycaemia, the insulin level was about 40 times the upper limit of normal.
The turning point was persistence: recognizing that the episodes still needed an explanation, then convincing
a third expert professor to order specialized imaging, including a Dotatate PET scan. That scan helped find
the lesion. Rare diseases are difficult because most clinicians quite reasonably start with common causes,
but a rare diagnosis can still be real when the pattern keeps pointing there.
This is only one example of a wider problem. Some diseases are missed, diagnosed late or given the wrong
label because they are rare, because early tests are normal, because symptoms cross specialty boundaries, or
because the right measurement is not captured at the right time. People with hypoglycaemia, for example, can
look faint, confused, anxious, neurological or psychiatric if low glucose and inappropriate insulin are not
documented during an episode.
The lesson is not to self-diagnose from the internet or AI. The lesson is to use information to ask better
questions, keep records, notice patterns, seek the right specialty, and ask for reassessment or a second
opinion when the diagnosis does not fit. Normal tests can be reassuring, but they do not always close the
case.
Related case report:
Insulinoma presenting with post-prandial hypoglycaemia following fundoplication.