Discussions that mention metoprolol

Rare Disorders board

1 year ago I had a CT scan done to look at my appedix because of abdominal pain that had lasted almost 2 weeks (my BP was also high, but they thought it was due to the pain). My appedix was fine, but I had tumors on both adrenal glands. The ER Doctor who didn't know anything about Pheo's put me on Metoprolol, a Beta Blocker and told me to see my regular Dr. asap.

So started my journey of Pheochromocytoma. The Beta Blockers put me into hypertensive crisis, a week later when they figured out that I really had a pheo, they moved me to alpha blockers instead. Took 2 1/2 months to get my BP under control and blocked.

I found out that vonHippel-Lindau Disease runs on my fathers side of the family. (I had just recently met my father again after him leaving when I was 6 years old and never returning). I had my left adrenal glad removed last May with an 8cm tumor. They left the one on the right side becuase the MIBG test (finds the tumors) did not "light up" on the right side. That is fortunate for me because my surgeon does not do partial adrenalectomys and would have taken both out.

In Nov. I started having "episodes" again. Quite mild compared to before, but enough for me to think that my other pheo is active part of the time. My Dr. suggested that maybe I am doing it to myself (it's all in my head).

In January I started a pilot clinical trial for one of my other manifestations of VHL at the National Institutes of Health in Bethesda, MD. The nurse I saw there to make sure that us VHL people were healthy enough to participate in the study actually knew all about VHL and it's manifestations. She got me in touch with the Urilogical Oncology Dept there and I was seen on my last trip- they have done tests and imaging and actually believe me that something is not right. I will get results end of next week and meet with them again next month for a plan of what to do.

If you think you have a pheo, do your research first. The Pheo Board that Merril gave you the link to is a wealth of info. Also the NIH site (nih.gov) has additional info on pheo's. Make sure your Doctors are performing the correct tests. 2 urine tests should be done: 24 hour Metanepherines and 24 hour Catecholamines. There is also a blood test: Plasma Free Metanepherines. If your Doctor doesn't believe you should be tested, find one that will do the tests. Make sure that you follow dietary restrictions that go with the Urine Met. test and the PFM blood test, no restrictions with the 24 hour catecholamines. All urine collections must be refriderated the entire time you are testing.

Whatever is going on with you, be persistant until you and your Doctors are able to figure out what is causing it.