Today I noticed that this blog has its first follower. I thank you, my friend, to follow this blog. I promise all of you that you will find this blog providing much-needed information on pheochromocytoma diagnosis and treatment. I want to take this opportunity to remind you of asking me questions about pheochromocytoma or commenting on the contents of my blog.
I believe that my blog has a unique niche among all websites on pheochromocytoma. The most important feature of this blog is that it is interactive. It will be just like a doctor friend who has in-depth knowledge in pheochromocytoma. Either you are not sure whether you have pheochromocytoma, or you do have it but are not sure what the best treatment is, or you want to know how you should be followed after tumor resection, you can ask Dr. Pheo. In the future, after many questions are asked and answered, you probably will find your questions already answered by reading past articles. As pheochromocytoma and neuroendocrine tumors are so intriguing, I am sure that I will always have something to write about, and you will always have something to ask about.
Dr. Pheo
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I want to thank you for being a doctor that is willing to post up and talk to others about pheochromocytomas. I'm hoping doctors and patients alike, who are just starting out on this medical issue get a chance to read your blog and ask you questions. In my past, I've been to many doctors offices and had to explain what this tumor is, so the more people talking about it the better!
ReplyDeleteMy question is: In your experience with this tumor, have you ever read or seen some type of advice for doctors on how to talk to a pheo patient? I've seen a number of doctors (that know about this tumor) interact very well with pheo patients, but the doctors who have little knowledge of the tumor or just know the "textbook definition" seem to not understand the emotional trauma that the extra catecholamines can cause. I guess the bottom line is, I worry that there is no guidance for doctors on how to treat the pheo patient and only information on how to treat the tumor. If there isn't any advice out there, what kind of advice would you give?
Any advice on controlling erratic BP? Phenoxybenzamine (20mg twice daily)seemed to work for a while but then he developed severe postural hypotension over 3 months leading to admission to a surgical ward. Ian was put on Doxazosin (2mg) in hospital and developed a chest infection/pneumonia within 2 days then became seriously ill with malignant hypertension and tachycardia (140+) which was somewhat terrifying for me. His heart rate was so high his whole body was pulsating with the pressure, his face was purple and swollen, he was extremely agitated and temp was high. He was discharged on Doxazosin 5 days later but his BP remained high (average 170/110) so he was recommended to double the dosage of the Doxazosin and the BP is now within normal ranges and pulse rate low (av. 60). As an aside - Doxazosin also has some interesting side effects which as his wife I am not complaining about :)
ReplyDeleteDear Jane,
ReplyDeleteIt sounds like that he had a hypertensive crisis by pheo induced by the infection. The selection and dosing of medications for pheo are different at baseline and in crisis. phenoxybenzamine 20 mg twice a day may be too much for the baseline. You can use phenoxybenzamine, doxazosin, or calcium channel blockers at baseline. The key is titration and side effects profile.
By the way, I know exactly the interesting side effects you were referring too. It can be scarry to the guy without warning. See my next post for that.
Dr. Pheo
Dr.Pheo
ReplyDeleteMy medical issues began 8 years ago. It started out as flu like with enlarged lymph nodes in neck and collar bone. The progession then started with my neck and shoulder muscles and then from head to toe. Muscle, joints and tendons aches,pains,tight ess,stiffness,and hard. While that was happening to my muscles,my skin began to change feeling thicker like there was something just under the skin that was lumpy and texture of skin changed. When skin is damp from washing or sweating it becomes sticky. Feels like there is a film covering my body. My symptoms have begun to change again in different parts of my body. Such as hair loss about half is lost.Buzzing in ears,pressure in eyes,numbness and tingling, dehydrated mouth and nasal,low body temperature, high blood pressure, cold feet & hands, feet turn purple, cold sensations through body,tongue swells,swelling, sweating itching, fatigue, anxiety,rapid heartbeat, bouts of diarrhea, nausea,low potassium, vitamin D, iron.
Abdominal pain, soreness,burning happens a lot first thing in morning along with when I first wake up rapid heartbeat and muscles feel heavy and feels like there is a vibration in trapazoid muscle. When physically active start sweating and cold to touch without much exertion. Breathing heavy. I had breast calcification and granuloma in jaw both negative. I have lung nodules. I had biopsy for Amyloid which was negative.
I know this is a lot to take in, but it's 8 years in the making,and anything you can suggest would be appreciated more then you can know.
Thank you
Dear Anonymous,
DeleteYour symptoms are not typical for pheo.
Dr. Pheo