Does mass in the adrenal gland indicate VHL?
Could it be what my new PC suggested? A Pheo?
Sorry to learn about your medical condition.
There is a rare medical condition called VHL (von Hippel-Lindau) disease in which the two problems that you have alluded to here are present, sometimes long with other diseases.
The first is 'pheochromocytoma'. You have been tested for that in the 24 hour urine sample. It appears to be negative.
I encourage you to see an endocrinologist in person and consider getting retested preferably on a day when you have a 'spell'
RCC (Renal Cell Carcinoma) can be a part of the VHL syndrome.
I have noted that your CMP (liver/kidney blood tests and electrolytes/glucose are normal)
When I see someone like you in my practice I order the following tests in addition to a thorough physical examination:
Midnight Salivary cortisol
The cortisol test is to screen for a condition called Cushings syndrome, in which here we want to make sure that the adrenal adenomas are not making excessive cortisol. The saliva test I have mentioned is recommended only if you have a conventional sleep-wake cycle ie you sleep at regular bedtime at night and wake in the morning hours.
If you have shift work or an unusual sleep-wake pattern this test may not be appropriate for you. In such instances, alternative forms of testing are available to screen for this condition. Examples are 24 hour urine cortisol (with creatinine)
Despite your compelling episodes of headaches, sweating and blood pressure swings, it is notable that your 24 hour urine test for pheochromocytoma has not come back positive.
I suggest a fresh endocrine evaluation with consideration for repeat testing for
24 hour urine Fractionated Catecholamines and metanephrines
This would be particularly useful on the day you experience such a spell of symptoms.
Furthermore it requires a detailed overall assessment including medication history to ensure the test results are reliable.
Checking for Cushings syndrome is also important.
An academic center such as a university endocrinology department will help you rule out the possibility of VHL