Phaeochromocytoma difficult to get a diagnosis
I have been suffering a headache every day for the last 12 months, the specialists have blamed it on everything from thyroid trouble to cluster headaches, eye strain & migraines. All of which have proved totally wrong. I am positive that at first my GP & the \"experts\" thought I was making it all up. But after 10 months of taking every tablet invented, my GP spent an evening of his own time trying to find what it might be.
After 4 x24hour urine tests the only showed a positive reading for 2 out of the 4 tests. It was then down to a a chromogranin A blood test, which had to be sent to a special lab in London (none in Scotland where I live) and took 7 weeks to come back that my GP was proved correct and it seems to be phaeo.
To confirm this I have now got to have a MIBG scan which puts a low doseage of radio active isotope into you, you have 3 scans over a 48 hour period. Only then will they be certain that I have it.
So then you have to wait on a surgeons list. So it looks like I could be having daily headaches for another 3 months, at least.Report this