I have two criteria for entering doctors into this list: 1) great clinicians, and 2) clinical researchers with >=3 papers on pheo. Both criteria have to be met to be on this list. You will see that the list is pretty short. Pheo is a rare disease, and a doctor usually has to practice at a metropolitan area to see enough patients to become an expert. I need the readers to send me more names and I will check them and select those who meet my criteria. These doctors are mostly endocrinologists and I know personally quite a few of them. They are real experts on pheo.
The list is by no means comprehensive and will be updated frequently based on reader feedback. For example, at least one or two doctors in the list are semi-retired and I don’t know how long they will practice. In addition, if I have missed a great clinician who also does clinical research on pheo, please let me know.
California
Paul Fitzgerald, University of California San Francisco
Run Yu, University of California Los Angeles
Iowa
Thomas O'Dorisio, University of Iowa
Massachusetts
Robert Dluhy, Brighams & Womans Hospital
Michigan
Richard Auchus, University of Michigan
Minnesota
William Young, Mayo Clinic
Missouri
Ruth Decker, St. Lukes Hospital
Ohio
Charis Eng, Cleveland Clinic
Pennsylvania
Raymond Townsend, University of Pennsylvania
Texas
Camilo Jimenez, MD Anderson Cancer Center
DC
Karel Pacak, National Institute of Health
Constantine Stratakis, National Institute of Health
Canada
Shereen Ezzat, University of Toronto
UK
Ashley B. Grossman, St. Bartholomew’s Hospital
France
Pierre-Francois Plouin, Hopital Europeen Georges Pompidou
Germany
Hartmut Neumann, University of Freiburg
Graeme Eisenhofer, University of Dresden
Netherlands
Jacques Lenders, St Radboud University
Sweden
Barbro Eriksson, Uppsala University
China
Zhengpei Zeng, Peking Union Medical College
Japan
Yukio Hirata, Tokyo Medical and Dental University
Mitsuhide Naruse, Kyoto Medical Center
Australia
Bruce Robinson, Sir Charles Gairdner Hospital
Roderick Clifton-Bligh, Royal North Shore Hospital
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Dennis here:
ReplyDeleteYou are doing a great job...thank you from myself and no doubt other pheo-ites. The more we discuss, the more we learn.
Hi Dr. Pheo,
ReplyDeleteThank you so much for doing this blog!
I have placed a list of additional pheo physicians at the following link so that it would not take up a lot of space on your site:
http://pheochromocytomasupportboard.yuku.com/topic/4706/master/1/
Please check the link to see if you wish to add any of these physicians/researchers to your list.
I will probably add some more names to it later on.
Are you interested in pheo surgeons,genetic experts, radiologists, and pathology experts?
I would really like to see someone come up with a list of excellent head and neck surgeons who could remove carotid body tumors, glomus tumors, etc. without causing so much resulting nerve damage and other problems.
Dear tues1day,
ReplyDeletePlease feel free to post doctor names here so long as they are recommended by patients. The list I come up with includes only the real experts and I have personally checked and verified their research records. I am sure there are many other great doctors taking care of pheo patients. The real experts usually only become important when it comes to challenging pheo cases. By the way, all the doctors on my list are on the internet and patients can find their appointment number and address easily.
About pheo experts in other specialties. My feeling is that the endocrinologist should be the gate keeper, co-ordinator, and decision maker. Once a patient finds a good endocrinologist, the patient should expect the doctor to have connections with other experts.
I can set up a post on head and neck surgeons. As I am not a surgeon, I will not be able to provide my own list. We will see how it works.
Dr. Pheo
Dr. Pheo
Hi Dr Pheo...Thank you so much for ur blog.
ReplyDeleteI am a Pheo patient from Mumbai,India. Would you be able to suggest a gud endocrinologist frm India?
Thank You
hi...
ReplyDeleteI read the earlier blogs. I am a patient of pheo. There is no history of pheochromocytoma in my family. Neither of my parents have\had it. The doctors cannot explain the reason why I have it. Should my sibling get her tests done? Although she does not have any health problems.
Kindly suggest.
Thanks
I read the term "Silent Pheo". What exactly does that mean and how does one get them to "talk"? If a patient has a history of unilateral pheo and the other adrenal images a unknown small mass the assumption is pheo - however if the PFM tests come back "normal" it becomes a wait and see game. Would this be a time where stimulation under supervision is appropriate?
ReplyDeleteDear Mansi,
ReplyDeleteCurrently I don't know any Indian colleagues but I am sure there are many.
I answered your question on testing in a previous post.
Dr. Pheo
Dear David,
ReplyDelete"Silent pheo" is certainly a misnomer and I will discuss that false concept in a later post.
In your case, I will see what imaging characteristics the small adrenal tumor has. If the characteristics are suspicious for pheo, a partial adrenalectomy is best approach. If the imaging characteristics are more consistent with adenoma, then wait and see approach is better.
Nowadays, the plasma metanephrines are very sensitive so that the glucagon stimulation test is little outdated and seldom performed.
Dr. Pheo
Do patients tend to gain weight after removal of a pheo? I'm noticing this - it's very unusual for me. My pheo was removed in March.
ReplyDeleteIt can happen in some patients. You should use common good practic in diet and exercise.
ReplyDeleteDr. Pheo
My 14 year old nephew has the SDHB mutation, but has not had a tumor yet. His most recent 24 hour urine test results showed high numbers, but his endo isn't recommending any further testing. I've posted before, I have malignant paraganglioma, with my first tumor in my early teens. Please tell me what you think about these numbers:
ReplyDeleteMetanephrines, Fract (S)
-Total UA Volume - (S) *1840* ML
-Metanephrines 24hr UA (S) *2171* H ug/24hr <900
-Normetanephrine 24hr (S) *1963* H ug/24hr <600
-Metanephrine 24hr UA (S) *206* H ug/24hr <300
-Metanephr/Creat Ratio (S) *1497* H ug/24hr <600
-Creatinine 24hr UA (S) *1.4* g/24hr 0.8-2.0
-Epinephrine 24hr UA (S) Unable to calculate result since analyte concentration is below cetection limit of this method.
-Norepinephrine 24hr US (S) *265* H ug/24hr <80
-Dopamine 24 hr UA (S) *224* ug/24hr <500
Patient taking 40MG Isotretinoin (Accutane)
Thank you. Pam
In a person with SDHB mutation, these results highly suggest pheo or para until proven otherwise. I would further predict the tumor should be around 3 cm in diameter now and should be rather easily found by imaging.
ReplyDeleteDr. Pheo
How does chromogranin A level correspond to tumor size?
ReplyDeleteAre some labs more reliable than others?
Why do Quest Diagnostics/Nichols Institute and the Mayo Clinic have such different values when they use the same units (ng/mL)?
Is doubling in chromogranin A directly proportional to tumor size?
Do paragangliomas and their metastases usually grow at a constant rate or do they grow in spurts?
Are metastases of paragangliomas more likely to be functional is some locations than in others?
Chromogranin A correlates roughly with tumor size. Chromogranin A is also elevated in other conditions.
ReplyDeleteMetanephrines are more reliable.
The methods of measurements and standards are different.
Chromogranin A is elevated if you are taking antiacid drugs or having abnormal kidney function. If you are not, doubling of chromogranin A is hihgly suggestive of tumor growth.
The growth speed is not very predictable.
Metastatic paraganglioma can become non-functional. I don't think the location is important in determining that. The change from functional to nonfunctional is mostly a chance event.
Dr. Pheo
Dear Dr Pheo,
ReplyDeleteCan you tell me if you know of any studies about the effects of Zometa for patients with metastasized pheo to the bone?
No specific studies. My own experience is that Zometa works but I don't have hard data.
ReplyDeleteDr. Pheo.
Dear Dr Pheo,
ReplyDeleteMy sister had metastsized paraganglioma 14 years ago that affected her spine and neck. Surgery repaired the damage and was followed by radiation to those areas. The cancer then became dormant although many "hot spots" remained. Recently following a bone density text the doctor detected active cancer on her rib and a biopsy confirmed the cancer. She is being treated now with Zometa. Would cyberknife radiation be another form treatment? Richard
Dear Richard,
ReplyDeleteThe indications for radiotherapy for bone metastasis are usually pain or impending fracture. If the rib metastasis causes pain (even after Zometa) or will likely cause fracture, then radiotherapy is needed. To use external beam radiotherapy or cyberknife is usually determined by the radiation oncologist. Cyberknife is more indicated if the area has been repetitively irradiated previously. Hope these help.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteThank you for your quick and generous response. Fortunately my sister has never had pain from the disease or its damage to the bone areas, something that amazed the surgeon. This history of her disease is very strange. The cancer was traced to the carotoid body. She had a botched operation on that area 40 years ago - the doctor in a military base clinic thought he was removing a cyst. Ten years later she needed another operation. Cancer was not an issue or discovered either time. Then fifteen years ago while investigating a lump the tumors eating her spine and neck were discovered and the diagnosis of metastasis was made. Now it is back. Again, thank you for the care your blog manifests.
Dear Dr. Pheo,
ReplyDeleteI wrote a post on Feb. 27th concerning my sister's history with carotid body cancer and current situation with para. I have read various posts concerning familial issues and I am wondering should her four children, age 27 to 41 be test for genetic mutations? They have no symptoms that I am aware of, but then neither did my sister until a small lump was noticed by her husband. Thanks,
Richard
Dear Richard,
ReplyDeleteHow old was your sister when she was first diagnosed with the neck paraganglioma? How old is she now?
Dr. Pheo
Dear Dr Pheo,
ReplyDeleteShe was fifty when the paraganglioma was discovered. There is no info that I know of as to when it began. She is now 65
Thanks, Richard
Dear Richard,
ReplyDeleteShe has about 22% chance of having a mutation causing her paraganglioma. The question is whether you have a mutation. If you do not have para or pheo, it is unlikely that you have a mutation so the chance that your children have para or pheo is rather small.
Dr. Pheo
Dr,
ReplyDeleteI had a 11cm pheo removed 6 months ago and sometimes I feel up and down with energy levels and I do not seem to be able to handle stress well could this be because of the pheo being removed? Sometimes I just want to sleep and I just woke up any ideas?
Thanks post pheo man
Dear Brad,
ReplyDeleteIt is not uncommon for patients with a large pheo to feel fatigued after resection. You may want to check your blood pressure to see if you have lowish blood pressures. Make sure to be hydrated sufficiently. You should feel back to baseline in a year or so.
Dr. Pheo
I'm surprised you don't have Dr. Quan-yang Duh, MD on your list. He is in San Fransisco and is a researcher, and remarkable surgeon. I am positive that he and his crew saved my life and left so little scaring that it is amazing! I had a paraganglianoma on my liver the size of a baseball, and like many other patients was told for about 8 years it was 'nothing' and I had an anxiety problem etc. The tumor was right as the inferior veina cava met the liver and could not have been removed the way Dr's here were going to do it. Further, although for me my blood pressure was very high in the 120's (normal for me was 98-100) because it wasn't considered 'high' it was further evidence that what ever the mass was it wasn't a pheo or dangerous. Also I found mis handling of tests to complicate things. Lastly I appreciate your belief that an endocrinologist be primary, but the one I saw before it was finally confirmed as a pheo said "yes your met levels are a bit high but what am I supposed to do about it?", floored me and my DD who was with me.
ReplyDeleteScary to that my first serious 'attack' from it sent me to the emergency room looking like I was having a heart attack/stroke and was told "Nothing exists that has the symptoms you describe" years later I found a list of pheo symptoms and had presented with about 8 out of 10 of them.
Dear Cornucopias,
ReplyDeleteI do not list surgeons here because it is usually the endocrinologists who make the diagnosis and refer the patients to surgeons. For the majority of patients, self referral to endocrine surgeons is not productive. On the other hand, great endocrine surgeons like Dr. Duh are more experienced in pheo than many endocrinologists. Endocrine surgeons probably do not have the time to make a primary pheo diagnosis.
Dr. Pheo
Do you have the name of a good doctor in the San Diego area? My brother was just diagnosed with pheo and has a doctor but has been getting some conflicting information from his doctor. thank you!
ReplyDeleteDear Kelly,
DeleteI would try UCSD endocrinologists.
Dr. Pheo
I do not have a pheo but do have two paragangliomas. I had my CBT removed 4 months ago. I know have symptoms I never had before. I have severe headaches, flushing, hot flashes, fatigue, nausea, chest tightness, lightheaded and feeling like I'm going to faint. The only doctors I have seen have been head and neck oncologist and surgeons. I have seen local endo (colorado) and they look at me like I'm crazy. Would you suggest I try to see somebody on the list for help. I feel like it is all related. I don't know if my remaining para is causing problems or what. I was told it was inoperable. Thanks
ReplyDeleteDear Erin,
DeleteTo test whether you have pheo is straightforward. The best approach is to do pheo testing first. Perhaps also get thyroid tested. Rarely a para can cause pheo symptoms.
Dr. pheo
My father had a pheo removed at UCSF over 13 years ago, today we are awaiting results from the 24-hr urinary test for catecholamine and metanephrine levels due to masses recently found. Unfortunately he is now covered under Kaiser. I was wondering if you knew of a pheochromocytoma/paraganglioma specialist within Kaiser. Concurrently we are trying to get a referral from Kaiser to Dr. Paul Fitzgerald and/or Dr. Quan Yang Duh at UCSF, but wondered if you knew who could offer the highest level of specialized care within the Kaiser system for metastasized paraganglioma. Thanks so much for any guidance you can give.
ReplyDeleteDear aj,
DeleteI am not aware of a Kaiser pheo specialist. A large Kaiser, however, should have doctors with experience in pheo.
Dr. Pheo
Hi, Dr. Pheo. Thank you SO much for this blog. This is an older post, and I have no diagnosis of pheo as of now. I am a 30yo female. For the past 9 months at least, I have been going to dr after dr describing my symptoms. Racing heart, headache, adrenaline rush feeling, fear, loss of color and sweaty hands. I've been dismissed by most, told I have anxiety by some and complicated migraines by another. I am told consistently "you're young and healthy, and you're a busy mom of 3 little kids." All true. But I have felt for a long time I am just being dismissed. I am very active, exercise a lot, and typically have low bp. However, during these episodes, which were happening daily at times, I would venture to guess my bp was very high. I also have pretty significant orthostatic hypotension. I notice it a lot when I go from folded positions in yoga to standing with arms overhead. Most recently I feel more faint than ever while doing certain positional changes. While getting a ct scan for kidney stones, there was discovery of a 12mm adrenal nodule measuring 27hounsfield units. My dr has consulted endocrineology at my local hospital (Oregon health science university). If this does turn out to be a pheo, do you have any recommendations for Endocrinologists in Oregon? Thank you so much. I still hope that I don't have a pheo but I am preparing myself. I just don't want to be overlooked as "young and healthy" and have anything dismissed or poorly executed on that account.
ReplyDeleteDear Claudia,
ReplyDeleteIt is rare for young people to have an adrenal nodule so endocrine testing is important here. Oregon Health and Science University is a great place to get endocrine care.
Dr. Pheo
Thank you for the response! My gp wants to do a dexamethasone suppression test before referring me to endocrinology. With the symptoms I am having, I am so scared to take anything that could trigger any sort of episode. Is this safe? Thank you.
DeleteDear Claudia,
ReplyDeleteIt is safer to rule out pheo before the dexamethasone suppression test.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteI have done a saliva cortisol test (before the finding of the nodule), as well as the 24-hour urine catecholamines test (after finding). Saliva testing showed low cortisol and the 24-hour showed slightly elevated cortisol and elevated epinephrine at twice the upper limit. I know you prefer specific test values on this blog to be non-specific. Is there a place I can share my test results with you? I also want to be respectful of your time and expertise, I am finding that getting an appointment with an endocrinologist at OHSU is proving to be a lengthy and frustrating process.
Also. What is the link between pheo and pregnancy? My "episodes" started when I was pregnant with my 3rd baby in January of this year. I was initially referred to a cardiologist. They increased significantly postpartum, I went to the ER after a particularly scary set of episodes, and they have since tapered some. Is there also any link between pheo and calcifications throughout the body? In June I was found to have a calcification in my brain (after referral to neurologist) and in October I had two separate instances of hematuria, resulting in diagnosis of kidney stones. Stones were confirmed on CT when adrenal nodule was incidentally found. The stones occurred on two different instances, on different sides, within two weeks of each other. Thank you.
Claudia
Dear Claudia,
ReplyDeletePheo symptoms can first appear during pregnancy but the correlation is not a diagnostic criterion for pheo. Kidney stones and pheo may be related. The key diagnostic test is plasma metanephrines, though.
Dr. Pheo
Hi Dr. Pheo
ReplyDeleteMy wife was recently diagnosed with Pheo. We are going to the Mayo clinic for the workup there. Do you have any surgeon/anesthetist recommendations? We are local to the DC area and have considered NIH as well. We decided Mayo for now. Do you have a preference between the two? Thank you so much.
Dear Claudia,
ReplyDeleteThey are both really great. Just a matter of practical considerations.
Dr. Pheo
Hi Dr Pheo,
ReplyDeleteI recently had some blood work done and was wondering if you could give me your opionion as to whether you would recommend further tesing. My results were as follows:
12 Hour fasting blood test
Noradrenaline * 3210 pmol/l Less than 2293
Adrenaline 141 pmol/l Less than 459
Dopamine <196 pmol/l Less than 464
Many thanks,
Leonie
Dear Leonie,
DeleteThe plasma catecholamines test (the one you did) is not the best test and hard to interpret. The plasma metanephrines test is the best test.
Dr. Pheo
I do not see Dr. Karel Pacak at NIH in Bethesda MD on your list of Pheo doctors. We were told he is one of the best in the US. Can you confirm this for us please?
ReplyDeleteHe is listed under DC area in US.
ReplyDeleteDr. Sanziana Roman at Duke University. Also recommended there is Dr. Randall Scheri. My research shows Dr. Roman has written four papers on pheo and Scheri none but I don't have the resources you have. I have just been diagnoses with one that is putting out too much adrenalin. The recommendation from endocrinologist at Duke is to surgically resection. Have not met with Dr. Roman yet. It's 2.4cm.
ReplyDelete