Getting Diagnosed – Helping your doctor to help you
By Sarah Vivian and Kayla Harris Mack
As many of us with an insulinoma know getting diagnosed is not always easy. In theory it’s straightforward – see an endocrinologist, get booked into hospital for the 72 hour fast, if blood sugar falls to true hypoglycemia and insulin is raised – then diagnosed, scans, surgery. The reality, however, is often much more difficult. Because insulinomas are so rare many general endocrinologists – often highly regarded – have never seen a patient with an insulinoma and aren’t familiar with the protocols for testing. ‘Insulin isn’t high enough’, ‘you don’t have symptoms’, ‘blood sugar of below 3 is normal’, ‘it’s too rare to be a possibility’, ‘it’s anxiety’ are all comments reported by patients.
So, how to find a specialist with expertise in these rare tumours and get a booking for the 72 hour fast? Most patients need to get past the general endocrinologist in their local hospital before being referred to a NET specialist. Hospital bed space is scarce and so keeping records is essential. Nowadays it should be easier with a CGM to see the pattern of low blood sugar rather than relying on finger pricks – however getting either a finger prick monitor or a CGM is not always easy, or cheap – these tools are prescribed to diabetics, but low blood sugar doesn’t tick the right box. But keeping records really is key – by showing your doctor how low your blood sugar has been, together with the absence of highs, rather than just relying on occasional hospital blood tests which don’t always show up the extreme lows we live with day to day – it makes it much easier for them to see and understand what you live with daily. As it’s very common to become hypo unaware we can’t always rely on physical symptoms, we need to show actual results obtained at home. Much like a continuous blood pressure monitor, a CGM or finger pricks gives the doctor a more accurate picture.
Records of eating habits are also essential. It is understandable and correct that a doctor will check your diet to make sure you are eating well and regularly, not eating excessive amounts of sugary food, not living on caffeine and not much else. Reactive hypoglycemia is a relatively new diagnosis that seems to crop up often in the Suspected Insulinoma Group. It does seem as though some doctors use this as a diagnosis rather than a symptom. But if a person can show they are eating well and regularly, not skipping meals or eating excessive junk and sugar, blood sugar shouldn’t drop so excessively that it impacts on your life. Once diet has been ruled out as a cause for hypoglycemia then other causes can be looked at. Further blood tests and hopefully a booking for the 72 hour fast to check for an insulinoma.