I hope everyone has been as safe and healthy as possible during the COVID-19 pandemic!
During the early days of the pandemic, I saw most patients by telemedicine in the form of a video visit. I did see quite a few pheo patients by telemedicine as well. My experience with telemedicine for pheo patients and my interaction with readers on this blog convince me that pheo is the model disease for telemedicine.
As physical examination, a key part of patient visit, rarely contributes to the diagnosis and treatment of pheo, telemedicine for pheo does not lose much compared with traditional patient visit. History taking and review of laboratory test results and imaging studies are the same in telemedicine and in traditional patient visit. The time and cost saved by telemedicine on the patient’s part can be tremendous. With telemedicine, a patient can access a pheo expert much more easily even if the expert is in another city.
Of course, nothing can replace the personal touch, the body language, and the many subtle details during an in-person visit. For the purpose of pheo diagnosis and treatment, however, the convenience of telemedicine offsets its shortcomings. Many of my colleagues feel that telemedicine will be here to stay as an important alternative to in-person visit. For patients with suspected or known pheo, telemedicine will continue allowing them to access pheo experts not locally available.
Dr. Pheo
What do you know about EPAS1 causing Pheo?
ReplyDeleteDear Anonymous,
DeleteI am not an expert on EPAS1. This gene encodes the protein HIF2A. Mutations that make HIF2A overactive causes pheochromocytoma and polycythemia (too many red blood cells).
Dr. Pheo
Thanks for the useful info. I appreciate your efforts for gatherin it. Also, here i want to share one thing.
ReplyDeleteRecently i found a article that contains useful information about kidney disease and diabetes. They explained about what are the foods we need to avoid with our diet for diabetes control. So in thought of it might be useful to other, here i share that article about foods to avoid with diet for diabetes .
Hi! Initially I developed POTS 15 years ago. It caused high blood pressure/heart rate with standing. I spent the first few years seeing many regular endos, getting worked up, which included labs for pheo(normal) and imaging(1.2 nodule on one adrenal). Over the year, I was found to have slightly elevated VIP(3x) and a regular scan showed nothing. Symptoms slowly increasing over the years. Two years ago, tested VIP again, it is 25x high, and had a Dotatate scan showing nothing. Also in the last few years, I have made the connection between eating tyramine foods and days of really elevated b/p(I fainted for the first time recently). I tried to get into MDA(3 hours away), but they won't take me with no symptoms of VIP and not seen on imaging. How do you find someone to investigate something that is fairly rare like odd VIP issues, and I strongly suspect a pheo due to symptoms and food reactions? Thanks for any direction!
ReplyDeleteDear Anonymous,
DeleteThe high VIP may be due to an interfering antibody in your blood. You can measure VIP after "PEG precipitation." This has to be arranged specifically between your doctor and the lab who will do the "PEG precipitation."
Dr. Pheo
Hi Dr. Pheo, is it possible to set up a telemedicine appointment with you? I've been dealing with pheo type symptoms for nearly 6 years now and there is a lot of context that would be easier communicated verbally vs a giant wall of text. If you do not participate in my insurance plan (Cigna PPO) I will happily pay out of pocket.
ReplyDeleteDear Mike,
DeleteI will be delighted to see you via telemedicine. Please send an email to dr.pheo@gmail.com to get the appointment information.
Dr. Pheo
Dr Pheo
ReplyDeleteI am post operative approx 16 months. I have never seen my results post op, my FDG Pet post op scan only Telehealth appointments where they declare I am fine. Genetic testing didn’t find any determinant gene.
I am having symptoms again although not the “triad” of symptoms. I experience the surge like feeling in my arms. Headaches come and go daily. I have had tremors again. Is it possible to have recurrence already?
I thought these were slow growing? I was also told it’s highly unlikely they would recur. Although I have read many stories and experiences that argue this is NOT the case. Also, if you are not familiar with her check out PheovsFabulous blog, you’ll enjoy it.
Dear anonymous,
DeleteYou can simply check plasma metanephrines to see if you have recurrence. Rarely quick recurrence can happen.
Dr. Pheo
What is the significance of coarse or punctate calcifications that show up in an adrenal tumor on a CAT scan? Could those be signs of old hemorrhaging? My CAT scans show a high density tumor with calcifications and I'm trying to understand it. My doctors so far have not explained it.
ReplyDeleteDear Graysi72,
DeleteCalcification in an adrenal tumor is not a specific finding. It can be mean hemorrhage or old infection. Your radiologist needs to measure the density of the adrenal tumor where calcium is absent (which is more important than the overall density including the calcification).
Dr. Pheo
Can contrast agents used in MRI and CT scans interfere with plasma metanephrines testing? I recently had an MRI with contrast and followed that up a few days later with a plasma metanephrines test. This test is the lowest one I've gotten (normets are usually high). Could the contrast have any affect?
ReplyDeleteDear Graysi72,
DeleteThey should not affect metanephrines tests.
Dr. Pheo
How many plasma metanephrine tests are enough? I just completed my 6th test. In all of them, my normetanephrines are elevated to varying degrees: once 5X, once 2X, 4 times in the borderline range. The doctor wants to run them again. I suppose she is looking for that elusive "normal" test that will make this all go away! Why can't I just get a diagnosis?
ReplyDeleteDear Graysi72,
DeleteThere are no officical rules. It all depends on the doctor's clinical suspicion. If the clinical suspicion is low, repeat testing is reasonable. The purpose is to see if the test results keep getting higher or fluctuate.
Dr. Pheo
They fluctuate. The first test was borderline, next 5X, next borderline, next 2X, etc. To top this all off, my surgeon just wrote me today that, because my tumor didn't give the "light bulb signal" on the MRI, he's certain it's not a pheo.
DeleteI'm so frustrated! This has been going on for almost a year! I had a Takotsubo in August of last year and that was the start of this "re-diagnosing" by doctors in my medical group.
Dear Graysi72,
DeleteThe diagnosis of pheo depends on the marker levels and imaging apperance. The details do matter. It is better you go to a university academic center to get a clear answer.
Dr. Pheo
I'm trying to become your patient but my insurance company doesn't seem to like that idea! I'm appealing their decision now.
ReplyDeleteMy appeal was denied again. I'm ready to just give up.
DeleteIs it possible for a pheo to be sporadic? I'm going through a period where I have low blood pressure (I'm on a lot of meds though) and my blood sugar is low (last few years it's been borderline diabetic). My endo knows there is something wrong with me, she just can't figure out what it is!
ReplyDeleteDear Graysi72,
ReplyDeletePheo symptoms can be intermittent. The pheo tumor, however, persists.
Dr. Pheo
How can I get a printed copy of your paper on small pheochromocytomas? I've tried everything with Wiley Library and there seems to be no way to download or print it. Thank you for your help on this. I need it to give a copy to my doctor.
ReplyDeleteDear Unknown,
ReplyDeleteI am sorry but I cannot upload the paper here. You can give your doctor an abstract of the paper. Your doctor may find a way of getting the full paper.
Dr. Pheo