Posted over 18 years ago

Welcome to my blog on my condition known as pheochromocytoma. The purpose of this is to chronical the process I am going through in diagnosing and dealing with this condition.

This all started summer of 2004. I started having frequent episodes that I can best desribe as "adrenaline rushes." Usually this would be first thing in the morning but would also happen at times after having a heavy breakfast. The symptoms were a rush through the body particularly up the spinal cord, nausea, headaches, dizziness, and a general feeling of anxiety. One odd symptom - and I noticed this several times while riding on the bike - is that my heart rate would actually drop during these episodes.

I originally visited Virginia Mason (Bellevue) to find out what was going on. No diagnosis was quickly uncovered. I had some basic neurological tests done as well as and EKG and everything seemed to check out in these areas. I also had some blood work done and there was nothing to indicate high blood sugar. After a couple of trips to the doctor they suggested this might be panic disorder and a possible treatment would be a drug like zoloft. I was a strong believer that this was a reaction to something chemical and not psychological and so I discounted that diagnosis and sought other opinions. I got a similar diagnosis from a second doctor (also at Virginia Mason).

By September '04 the attacks had stopped and so I did not think much about it through the following year. But they reappeared last summer but in a different form. Rather than getting headaches as a result I would get more stomach/GI pain. Rather than first thing in the morning it would happen more at night and often would wake me a couple of hours after I had gone to bed.

I started seeing a third doctor (not VM - private practioner) who thought this might be related to a reflux disorder. We did a barium swallow (you drink about a gallon of a liquid that has the consistency of an Orange Julius and they tilt you around on an x-ray bed to see how your insides look as you swallow the drink) which revealed no hiatal hernia (where the stomach protudes into the esophagus) or other serious reflux problem. There was a thought this might be related to the vagus nerve - which runs from your abdomon around the stomach, hearth, esophagus into the brain - in which its overstimulation might be causing the heart slowing and GI discomfort. I was prescribed Prilosec and beta blockers (this with the intent of regulating the heart) but neither had any effect. These diagnostics lasted from June through November with very little happening to curb the episodes.

Through December not much happened - it was a busy time with Christmas season (I visited KS for a week) and when I returned I got terribly sick and was so for about three weeks. During that time I visited the VM clinic three times to see what I had and to get antibiotics. I saw the original doctor the first visit (just a flu - rest and it will pass) and a new doctor the 2nd/3rd visits (this is doctor #4 for those keeping track). During the third visit the doctor realized that I had high blood pressure the last fiew visits and noticed a marker in my blood that indicated high adrenaline levels. At this point she ordered a urinalysis to see if there were more adrenaline markers than just the blood test would show. I also had the pleasure of purchasing a personal blood pressure machine to do daily readings. Finally, I got my antibiotics which in 5 days kicked the hell out of whatever I had.

So, after about 1 1/2 weeks I returned to the doctor to get my diagnosis and this is where we are in the tale. Indeed I had three (of four) markers in my urine that were highly elevated - 4-6x as much as would be considered normal. This pre-diagnosed the pheochromocytoma but it was up to getting a CT Scan to determine this for sure. So, we're setting up an appointment to get the CT done and to talk to an endocrinologist this week. The specialist will give the CT results and prescribe next steps.