I hope everyone has had a great holiday season. As the presidential campaign is gaining more steam, it is interesting to point out that pheo is a very presidential tumor.
President Dwight Eisenhower had severe, labile hypertension and multiple heart attacks and strokes. He died of congestive heart failure in 1969. Autopsy unexpectedly identified a 1.5-cm left adrenal pheo. Some notable physicians believe that the president’s pheo might have even contributed to his heart attack in 1955. The president had one of the best cardiologists (Dr. Paul Dudley White) as his personal physician and pheo was already well known as a cause of hypertension in the 1950’s. One may wonder why pheo was not thought of by the president’s medical team. Having seen quite a few patients with small pheos, I actually do not think the president’s pheo was clinically significant. Had the pheo been found and resected before his death, the president’s clinical course would not have been much different.
Steven Kubby sought to become the Libertarian Party’s nominee for president in 2008. Mr. Kubby is well known for his support of medical marijuana use. He has malignant pheo. He also had one of the best cardiologists (Dr. Vincent DeQuattro) as his doctor. Mr. Kubby received conventional treatment for malignant pheo, then he found marijuana. He claimed that marijuana solely controls his pheo symptoms and tumor growth. There is no medical literature on marijuana and pheo. Although marijuana can be used to increase quality of life in patients with severe malignant pheo, I am not aware of any mainstream doctors who prescribe it as the only treatment of malignant pheo.
All the information about the above two patients with pheo was gathered from public sources available to all.
Happy New Year!
Dr. Pheo
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Dear Dr, I have been put onto you for guidance in the below, Here is my story....
ReplyDeleteI am 44 from the UK. Last Jan I had an injury , whilst A&E were checking they said you have v high BP, went to my GP and he said it was ok. Got back to work, major headaches that never went away,started to feel strange, like being “drunk” and “spaced out” carried on but periods of these getting worst along with chest pains, blurred vision, sweats, shakes. One day in on of these periods of feeling “drunk” came over with extreme fatigue…. ( I worked in a prison) taken to hospital as I just collapsed ( did not pass out) Brain scan, Lumber puncture looking for subarachnoid haemorrhage, all clear, High BP was diagnosed, 2 x meds sent on my way. Back at work, still same symptoms, local GP upped meds, then again and upped to 4x meds. Still having the same periods of drunk, dazed, chest pains sometimes for a few mins, sometimes for hours then extreme fatigue. A few weeks later , bad morning, went to GP, BANG, GTN spray, heart tabs, ECG (normal) sign off work (june 11) Then Cariac unit, 24hr monitor (clear) 24hr BP (good) , next day, treadmill test, heart scan all ok. GP does 24hr CAT & comes back slightly high but within regions & sends me to Neurologist thinking MS/ME/depression/ epilepsy and seizures, Neurologist said all clear-Migraines + BP all over the place. GP sends me for tilt table test – All clear, however Consultant says BP unstable, I stop BP meds for 10 days, GP tests again and states BP is good stop all meds ? GP does Another 24hr CAT, HIGH, 2 x MIR head, all clear. Chest x ray all clear, Cardiac consultant, says he will to help implant loop, Sent back to Neurologist: All clear and tells GP to not re send me again, however concerns over CAT results and tells GP to scan, Another 48hr CAT Very HIGH…. Cardiac consultant writes to GP and says Pheochromocytoma could be a cause and to scan. GP says another 24hr Cat – this time within region of safe. Asked GP what next …… He said not sure so lets re test 2 x 24hr CAT. This is were I am, doing the CAT now and implant loop next week ? Not had an issue/episode since 26/12/11 Running everyday, biking everyday but very confused, lost career,lost relationship but positive…… what should I do ? I have eclectic copies of results,consultant letters .
Daren
Dear Daren,
DeleteI wonder if you can test plasma or urine metanephrines. They are more definitive than the catecholamines. With your symptoms, pheo is a good possibility.
Dr. Pheo
dr. pheo,
ReplyDeletei am a 22-year-old male. i've been to the ER several times the past month, originally for chest pain and tachycardia lasting two days, but have otherwise always been in great health. chest discomfort persists, but my cardio workup checked out, so i am ignoring it the best i can. i have also, however, developed orthostatic tachycardia (which concerns me the most of any of my symptoms), as well as shortness of breath, abdominal and back pain, constipation, palpitations, loss of appetite and weight, erectile dysfunction, brain fog, and minor night sweats. i seem to have lost any tolerance for anything exciting or stressful (my pulse picks up and i get very anxious). i have not had the typical paroxysms associated with pheo, but my blood pressure has ranged from 115/60 to 170/100, and is normally between 120/70-150/90. i understand much of this could be caused by anxiety--the ER doctors and my physician are convinced it is all anxiety. my ER tests and physical examinations have all come back normal except for one occasion of slightly elevated bilirubin, and the ultrasound that followed checked out. particularly bothersome to me is that i did try an SSRI but was awoken the two nights i took it by episodes of palpitations, severe sweating, and shaking that my physician has written off as panic attacks but which i strongly feel were purely physical reactions to the drug. this response, combined with the orthostatic tachycardia, have me worried about carcinoid (i'm waiting on the results of a 5-hiaa) and pheo (which i'd like to test for next). do i sound unreasonable/do you feel that my symptoms at all fit with a NET? i know i should try to avoid "dr. google," but i am concerned and i don't feel that anyone is taking me seriously. i apologize for the long message and will understand if you haven't the time to read/respond.
thanks so much,
patrick
Dear Patrick,
DeleteIt is reasonable to test for pheo in your case. Let me know the results.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteMy tumor was discovered during enteroscopy for small bowel (jejunum) bleeding. Small bowel resection followed by immunostaining of cells. Stains strongly positive for S100, moderately positive for CD56 and synaptophysin, negative for chromogranin. Morphology and immunoprofile compatible with (3 cm) paraganglioma of small bowel.
Abdominal CT scan prior to resection did not show tumor, however, small bowel bleeding was occult and profuse off and on for past 6+ years. Urinary catecholamine test negative prior to surgery. Results for urinary metanephrine test was not available prior to surgery.
Comments? Recommendations? Where should I go from here?
Thank you!
Dear seatofmypants,
DeleteThe small bowel paraganglioma is a different tumor from pheo and other most common paras. It does not produce catecholamines. It should be considered as a small bowel neuroendocrine tumor. I would suggest the following:
1. Blood test for neuron-specific enolase (NSE) and chromogranin A (CGA) as baseline values (not very useful).
2. Octreotide scan.
3. Check fecal occult blood perhaps every 3 months.
4. Some kind of endoscopic surveillance.
5. CT scan of abdomen periodically.
Dr. Pheo
Dr. Pheo,
DeleteThank you for the invaluable information. Can you suggest a specialist in the SF Bay Area?
Thank you again.
I don't know the names of oncologists or GI specialists there. Dr. Jeffrey Norton at Stanford is an expert surgeon on neuroendocrine tumors. You can try to contact his office to get names of oncologists or GI specialists he works with.
DeleteDr. Pheo
Dr. Pheo,
DeleteYour knowledge and help is greatly appreciated.
Thank you once again.
I know this is an old post but I am hoping someone from the San Francisco Bay Area sees this posting. I am in need of 8 people to come in to our office here in San Jose, CA to evaluate the instructions that come along with a new medication delivery device used to treat neuroendocrine tumors. Individuals will only simulate the use as we are not a clinical trial.
DeletePays $150 for a 45-60 minute session.
We are trying to verify the instructions for use are clear and easy to read and that it's ready for distribution.
Please contact Jeana @ 408-834-8443 if you are interested in participating.
Thanks so much!
Dr. Pheo,
ReplyDeleteI’m a 23 year old female. I have been had numerous health issues for the last 3 to 4 years. I’ve had multiple surgeries (sinus, appendix, tonsils, laparoscopic endometriosis surgery and myomectomy) as well as have had a pic line for intravenous antibiotics for 2 months and numerous test. And no one can seem to find an answer for my health problems. In November 2010 I was hospitalized for a week. I was sent to the ER with nausea, vomiting, blurred vision, tachycardia, sweating, fever, rash, blood pressure 154/145, then going low. I was hospitalized for a week. Where my blood pressure and heart rate would spike intermittently, abdominal pain as well. Although my blood work was all over the place none of my test pointed in a particular direction. From then on I have experienced episodes of tachycardia with my resting heart rate up to 200 bpm. Blood pressure to 175/145, vomiting, nausea et.., after an episode I feel like I have ran a marathon, I’m weak, nausea and cannot keep down food, I get a horrible headache abdominal pain. Now I cannot seem to go to a Drs appointment without this taking my blood pressure and pulse and calling 911. My episodes are becoming more and more frequent. I had a PET scan that showed mild and intense uptake in my left abdominal region, as well as a CT scan and MIBG scan that showed a 1 cm mass on my left adrenal gland. Although, I have had no biological evidence. I have weeks were I do not have an episode and then out of nowhere another episode happens. Each time my blood pressure and heart rate are higher. I’m currently not on any medications. I have stopped all medications to confirm their side effects are not causing my episodes. In between episodes my blood pressure is normal. Unfortunately, the doctors here have not had experience with diagnosing or dealing with Pheos or adrenal masses. Any ideas of what step is next. Doctors have discussed venous sampling? Although, my CT and MIBG scan came back positive right before the holiday and I have had no direction on what is next or where to go from here. I also have horrible drenching night sweats where I have to wake up and change my clothes and bedding. My pillow is now yellow. I also have hot flashes during the day. I experience horrible reactions that create an episode with cold medications, prednisone, as well as Cymbalta. Any ideas or guidance or knowledge you could provide would be amazing. Thanks.
Dear Kathryn,
ReplyDeleteIt looks like that your biochemical markers of pheo are normal. Have you tested plasma metanephrines? If you have and the results are indeed completely normal, pheo is unlikely. Please confirm that.
Dr. Pheo
Hi Dr. Pheo, I was wondering you opinion on alternative therapies, like the need to keep blood sugar stable if you have this disorder, Dr. Burzynski's therapy if you get cancer from a tumor, getting blood tested for mineral deficiencies like done at spectra cell labs, etc, taking super greens and protein probiotics to keep the adrenal system running at best level, etc. Just thought it could be an interesting read on your blog. You are a great asset in our trying to figure out this condition. Thanks so much.
ReplyDeleteI will discuss my opinions on alternative therapies in a later post. Thanks.
DeleteDr. Pheo
DR. Pheo:
ReplyDeleteTest
I am 87 year old male. I was Dx w/ 2 cm Pheo in 2007. It was found on a CT scan that was done for Hernia. I have had high BP since age 20 (maybe a pheo also) I have Afib, CAD, and
ReplyDeleteGeneralized Anxiety Disorder.
In 2007 it was decided that since I did not have many of the troublesome symptoms (except fairy well-controlled HPB) that I would not have the surgery. They do a CT scan yeariy and
no change in size.
During the last few months I have had several HPB crisis 214/110 along with heart rate 170.
I take hydralazine, metoprolol, diltiazem, HTZ, digoxin---and recently phenoxybenzamine 10mg twice day---now starting 20mg twice a day.
I understand this drug is not for long term use. I am hoping for some real improvement in my BP. I am concerned about stroke, etc.
I think I may reconsider the surgery (VA does this at the VA Hospital in Los Angeles)
At my age and with my health problems I want to know if I am a suitable candidate for this surgery? If not, what other meds are could be used for BP control?
Thanks
Dear sodapop,
DeleteA 2-cm pheo unlikely causes severe hypertension. The real issue with a small pheo is that it can cause hypertensive crisis during unrelated procedures such as dental or surgical procedures. Blood pressure control in the elderly can be difficult, even in patients without pheo.
I advocate removal of small pheos in all patients who are fit for surgery. In your specific case, it sounds like that you have somewhat high surgical risks. The current blood pressure fluctuation is probably not caused by the pheo. I would suggest that you see a hypertension specialist who will optimize your blood pressure medications. In my experience, most patients, even the elderly, will have satisfactory BP control, if they are managed by hypertension specialists.
Dr. Pheo
Dr. pheo
ReplyDeleteI am so happy to have found you're blog. Reading these posts have made me feel like were not alone. My husband is 30 and has been undergoing testing and doctor after doctor for that last four months. Our family dr. ordered the urine test first due to his hyertention and his cromo levels were 3 times higher than normal. From there we went to a dr that specializes in nephrology and hypertention. He had 2 ultrasounds and 2 MRI's of his kidneys and adrial glads. But nothing showed up on those tests. So now he is scedualed for an MIBG. In the meantime he has also seen a cardiologist due to the tightness and pain in his chest. The EKG came back fine. But is also scedualed for an eco and stress eco. The nephrologist does not think that he has Pheno but is not ruling it out. The family doctor is almost possitive that it is Pheno. He shows all the syptoms except the weight loss. I am starting to feel at a loss because we thought that we would know what wrong by now. I have faith that the doctors are doing what needs to be done, but also worried that it seems to be taking to long. Because Phenochromocytoma is so rare it seems like they want to find someting else. The other condition that was mentioed is renal artary sytoma. I was just wondering what you're thoughts were? And does it usualy take four months or more after all these test to find out what is truely wrong?
Dear Michelle,
DeletePlease measure your husband's plasma metanephrines and start from there. The suspicion of pheo is not very high.
Dr. Pheo
This comment has been removed by the author.
ReplyDeleteDr. Pheo, it's your faithful follower, Pam. Unfortunately, this patient has had to start CVD chemo again. On the 4th cycle. Just met with oncologist after getting a PET/CT scan. Now, the doctor said that the scan looks much worse that it is, and he thinks that the techs at the PET scan dept. messed up on the dosage. When asked for the report, and the doc gave it up, but again warned the patient that he thinks radiology got it wrong. Dr. Pheo, if you saw theses images, and read this report, I'm not sure what you would think. But, this patient did get some interesting news from the oncologist letting them know he now has his 2nd pheo patient, and has been on the phone with Dr. William Young from the Mayo. That makes the patient feel better.
ReplyDeleteHow can this patient get a second opinion on these images and reports? Could you?
So, two things: medicinal marijuana has really worked wonders for me, especially for the anxiety, sleeping, and general mental well being, along with the pain relief from so many tumors. It keeps my BP low, I look forward to your post on alternative medicines. Here is one of a few favorable medical journal reports: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277837/pdf/1477-7517-2-21.pdf
Second: Mayo Clinic has an oral chemo clinical trial out right now, Phase 2, on a 28 day cycle. Do you have any information on how that is going, or where a person can find out where it's going?
Dear Pam,
DeleteI'm sorry for my late response. I've been really busy last week.
The best way of interpreting the PET/CT is to ask you oncologist to talk directly with the nuclear medicine doctor. I do that all the time with our nuclear medicine doctors. The dose of FDG and timing of imaging can both matter. I myself am not a nuclear medicine specialist.
I am glad that medicinal marijuana works for you.
I don't know much about the Mayo trial.
Best wishes,
Dr. Pheo
Hi Dr. Pheo,
ReplyDeleteYou were a great comfort and help to me during the difficult past couple of years with the SDHB mutation, Carney Triad, neuroblastoma and my twin sister, Eileen's unfortunate passing.
My 3 years old grandson, with the neuroblastoma, is doing well after surgery on January 11th at NYU. It seems the large syrinx in his spinal cord (running all the way down the cord) was caused by scar tissue that the surgeon feels was caused by the neuroblastoma tumor pressing on his spinal cord for so long. We are all having periodic screenings because of the SDHB mutation.
Someone I know is having a hard time with dealing with the exhaustion and general feeling of malaise after an "episode". Do you know of anything that they could do to help them through the next few days after such an episode?
Thank you so much for all the help you have given.
Frances
Dear Frances,
DeleteThank you for the compliments.
The exhaustion after an episode happens to many patients with pheo. I am not aware of any specific treatments. I tell my patients to rest, have ample hydration, and be slow when they rise from sitting or lying position.
Dr. Pheo
43 y.o. female began experiencing symptoms about 18 months ago. Her primary complaint is frequent (2-20x daily) and spontaneous, DRY flushing, of the face, ears, neck, and arms. It is this flushing that led her to seek initial medical treatment. The flushing is bilateral most of the time, but approximately 10-15% of the time, only one side of the body will flush. She has identified a few triggers (some foods, exertion, heat), but the flushing can also occur for no apparent reason. (e.g. Getting out of bed in middle of night to urinate, or just sitting reading a book, can bring on a flushing episode.)
ReplyDeleteAdditionally, the patient was diagnosed with hypertension about 15 months ago, and it is well controlled with 2 meds. There have been only a few episodes of wildly fluctuating hypertension, and the few episodes lasted between 8-24 hours, with meds making no impact.
Other symptoms include - severe headaches that last between 24-48 hours, and are not helped by meds. Frequent heart palpitations, random abdominal aches and pains, occasional diarrhea, GERD, "waves" of just feeling really weak and nauseous that can last only a few minutes on up to 20 minutes. Patient also experiences sudden onset of EXTREME drowsiness. So extreme that she feels as if she has been drugged, but then it passes as quickly as it comes. Digestion of a meal CAN trigger it, but the drowsiness also occurs just at random times of the day. Edema of left foot occurs a few times a week, without any obvious trigger. Drastic fluctuations in weight, gaining or losing as much as 100 pounds in 6 months.
During a recent visit to her endocrinologist, she asked about the flushing. After some discussion about all of her symptoms, the Doctor ordered 5-HIAA, CgA, Urine and Plasma Metanephrines, and Catecholamines. He did not order VMA. The patient was not asked to stop meds (which include Paxil and Nexium) or caffeine, or anything else. CgA results were elevated 2 x upper reference value, and nearly 3 x upper limit for Urine Metas and Catecholamines. Plasma Metas were 2 x upper value. 5-HIAA fell within normal limits.
The Doctor suspects Pheo, and advised that the next step should be an Octreoscan. However, a week BEFORE the above tests were ordered, a different doctor (her Gastro Doc) ordered a CT scan with contrast, of abdomen, to help determine reason for abdominal cramping. The Radiologist said he found nothing remarkable on the scan.
I have several questions:
1. The Patient's Father is currently being treated at a Major Cancer Center for low grade neuroendocrine carcinoma. He has 5 carcinoid tumors. However, her Father has a different constellation of symptoms, and for the most part is asymptomatic. He has high blood pressure controlled with meds, and suffers from diarrhea. My question is, "If you were treating this patient, would knowing this about the patient's Father, weigh into your decision, regarding how to proceed with her? Would it make you assess her symptoms differently?"
2. Would it be unreasonable to have radiologist have another look at the CT scan with new information (potential Pheo or Carcinoid)in his mind?
3. Should labs be repeated after stopping meds, no caffeine, etc. and lying in a supine position for 20 mins before giving blood? How drastically will these things influence outcome of tests? Or are the elevations indicated above, combined with the array of symptoms I described, enough to convince you of the possible existence of a Pheo? Do you feel we could be on the right track? Or way off?
Thanks!
Dear KK,
Delete1. Family history should always be important.
2. Not at all. In addition, the endocrinologist and the radiologist should ideally read the film together. With normal 5 HIAA, carcinoid is not very likely.
3. Those factors do influence the test results but not in a major way. Please post the exact values with normal ranges.
Dr. Pheo
Hi Dr. Pheo-
ReplyDeleteIs it possible for a "silent" pheo to be missed on an MRI? I've had 2 instances of unexplained unilateral adrenal hemorrhage (left side both times, 15 years apart, last episode 3 yrs ago during pregnancy) and a recent full endo work-up, incl. 24 hour cate test, thyroid u/s (I'm hypo, no nodules)and MRI looking for an underlying mass/pheo to explain the bleeding all came up clear. Hemo tests all came back neg for underlying bleeding disorder as well. Is it possible a small pheo is hiding except after I take prednisone- both eps were w/in 24 hrs of beginning pred. for asthma flare- the only time I've taken it since the first episode is the second episode. I know that's not how pred/adrenal function together, but the coincidence is the only explanation I've got so far. -L
Additional note: no history of HBP, but 45 lb weight loss in last three years, hair loss, anxiety, palpitations, "twitching" pain in my left flank, fatigue, exhaustion, and now elevated PTH.
ReplyDeleteDear LP,
DeleteA pheo probably would have grown over the 15 years. Thus pheo is unlikely.
Dr. Pheo
hey dr. pheo,
ReplyDeletepatrick again (22 y/o male). i did a 24 hr urine pheo test and the results are: 281ug normetanephrine, 211ug metanephrine, 30ug epinephrine, 52ug norepinephrine, 751ug dopamine, 2938mg creatinine. according to the lab report i received, the epinephrine, dopamine, and especially creatinine are a little elevated, though my doctor says this isn't consistent with a pheo. (he's basically convinced i'm just an anxiety case and wants me to continue taking an SSRI despite serious side effects. he says physical stress could have raised my results, though i was relaxed and at home the week surrounding my test.) any thoughts? with the way my symptoms have progressed, as far as concerns my digestion in particular, i'm inclined to agree it's not a pheo, but obviously you'd know best, and maybe you have some other idea?
thanks,
patrick
*after a little research i see that since my creatinine is so high, my catecholamine:creatinine ratio kind of excludes pheo?
ReplyDeleteDear Patrick,
DeleteIf the ratio is within normal range, than pheo is unlikely. Having said that, the best test is still plasma metanephrines.
Dr. Pheo
Dr Pheo,
ReplyDeleteI have been experiencing episodes of high heart rate/bp, anxiety, fast breathing, flushing, headaches, chest pains, abdominal pains, back pains, tingling through out my body and vision blurring. I think that gets them all. When this started a little over two and a half years ago I thought it was my heart. Visited the ER on several occasions thinking that my time had come. My doctor mentioned the possibility of a Pheo and ordered a 24 hour urine test. The test came back normal at that time. Also had abdominal CT Scan with contrast along with MRI of back, head/brain, also all the heart testing as well; stress test, nuclear stress test, echocardiograms, CTA and finally a heart cath. Everything has come back clear. The original CT Scan was done a couple years ago and I am wondering if perhaps a Pheo may have existed but did not show up. Recently my cardiologist ordered another 24 hour urine, this time it included acid with the test which made me question the original test without acid. This time the results came back with elevated VMA's, I was then referred to an Endo.
At the time of the last urine test I was on Atenolol 50mg 1 time per day. Since that has been increased to 50mg 2 times per day. I also take 40mg of Simvastatin 1 time per day and Ativan 1mg as needed. My endo is requesting another 24 hour urine but wants me off the Atenolol for 3-4 weeks before doing it. I have been told Atenolol will not interfere with this test but that Ativan would. He stated that I should only use the Ativan to get through the episodes. So I quit the Atenolol as instructed and heart rate and BP went hay wire, ended up in ER within a couple days. Started taking the Atenolol again and trying to wean myself off of it. My cardiologist suggested dropping to 25mg 2 times per day for 5 days and then to even quarter those pills to 12.5mg 2 times per day for 3-4 more days.
I am wondering if it would be better to ask for the Plasma Metanephrine/Catecholamine check as I hear it is more accurate. Also, is it wrong for me to question him on the meds and if they interfere or don't interfere? I am not a doctor obviously and don't want to make him feel as though I think I know more than him. That is not the case but I have done some homework.
The other difficult thing here is I do not have insurance so is it possible he is just trying to test me on the cheap to say ok I don't have it and to move me on? If the plasma test is more accurate/reliable seems to me it is time for me to have that done.
Thank you for any advice/guidance you can provide.
Dan
Dear Dan,
DeleteThe plasma metanephrines are indeed the best test. It is not interfered by most medications.
What are the VMA values and reference range?
Dr. Pheo
Hello Dr. Pheo,
ReplyDeleteThank you for your blog. I have a question related to my current situation; I seem to have a number of symptoms of Pheo (insomnia, some tremors, tingling, and muscle weakness) - have had both blood plasma Metanephrine & Catecholamine tests. Metanephrine test indicated all ok, but Catecholamine test indicated high norepinephrine (1045 pg/mL). Does this preclude Pheo, or is Pheo still a possibility? Both blood tests were done at the same time - 2 tubes, but drawn one right after the other... Does this seem reasonable? If Pheo is still a possbility, what test would be useful at this point?
Thank you for any insight you might have.
Jim
Dear Jim,
DeletePheo is unlikely if the plasma metanephrines are normal. If the catecholamines are measured in the second blood sample, they could have been falsely positive due to the stress of blood draw.
Dr. Pheo
Dr. Pheo,
ReplyDeleteSorry - a bit more info... Reference range for the Catecholamine Plasma test for NE was 0-874. (Also, I forgot to mention periods of tachycardia and high blood pressure are relatively common, and seem to recall about a decade ago or so that I had a benign cyst noted on my kidney somewhere, and the kidney was somewhat larger than the other I think, due to the cyst...).
Jim
Dear Dr. Pheo:
ReplyDeleteI have had conflicting results on previous tests for pheo including an elevated result of 146 pg/mL on the metanephrine fraction of a plasma metanephrines test done in a seated position by venipuncture. (see post 10/11/2011 ) In light of your previous replies to me, I consulted an endocrinologist at a university medical center.
He had two plamsa metanephrines tests done, both by the procedure of testing in the supine position, with indwelling canula, after 30 minutes of rest. The samples were sent to Mayo. The Mayo results concerning the metanephrine fraction were: 1st test- 0.52 nmol/L; 2nd test- 0. 49 nmol/L. The reference range listed on the Mayo report for the metanephrine fraction was <0.50 nmol/L.
Since the second test result on the metanephrine fraction was 0.49 nmol/L, below the upper reference limit of 0.50 nmol/L, which was listed on the Mayo lab report, I was told that the test was normal and that no further testing was needed.
It appears to me that the higher reference ranges listed on the Mayo report apply only to tests done following the Mayo procedure of sampling in a seated position with venipuncture. They would not seem to apply to my tests since they were done with the procedure of sampling in a supine position, with indwelling canula, after 30 minutes of rest.
It would appear that the appropriate reference range for tests such as mine, done by a procedure of sampling from a supine position, with rest and indwelling canula, would be the lower reference range of <0.30 nmol/L for the metanephrine fraction. The <0.50 nmol/L reference range for the metanephrine fraction listed on the lab report would be appropriate only for tests that follow Mayo’s procedure of sampling with venipuncture in a seated patient.
Thus, the 0.49 nmol/L result would not be normal if the appropriate reference range of <0.30 nomol/L was used.
Is this correct?
Has the reference range for testing in a seated position with venipuncture been misapplied to a test following the procedure of sampling in a supine position, with indwelling canula, after thirty minutes rest?
Thank you
P.S. Normetanephrine has always been normal. The results of the two latest plasma metanephrines tests on the normetanephrine fraction were 0.50 nmol/L and 0.55 nmol/L which were below not only the reference range listed on the Mayo report of <0.90, but also what I take would be the appropriate reference range for tests done in a supine position of <0.66 nmol/L. Two chromogranin A tests were also performed by Mayo at the same time. The results were: 1st test 251, 2nd test 187 (reference range <=225 ng/mL.)
Dear jhardy,
DeleteThis is a somewhat complicated issue. It all depends on how pheo becomes an issue at the first place (sorry but I don't know how to find your earlier post).
If pheo becomes an issue because you have symptoms of pheo, then those borderline results rule out pheo as the cause of your symptoms but you might still have a tiny pheo somewhere. The reason is that those borderline marker levels are usually not associated with pheo symptoms.
If pheo becomes an issue become CT or MRI incidentally finds a small adrenal nodule, then there is a good chance that the nodule is a small pheo.
The importance of the position at which blood is drawn has been argued over for many years by specialists. The bottom line is that the doctors should not diagnose pheo solely on a test result. Rather the doctors should take all clinical information into consideration.
In my opinion, your metanephrine fraction is not normal. But whether we need to do anything to address it now is another issue. If you have pheo symptoms, I would assure you that they are not caused by pheo. I would retest plasma metanephrines at least every year to see if the levels increase. If they do, then I would do CT or MRI of abdomen.
Dr. Pheo
Thank you very much for your reply. The pheo did become an issue because of symptoms beginning in August 2009. I’ve indicated below a summary of symptoms and tests in case you need to review them.
ReplyDeleteI want to be sure that I understand your response. Is it that even if the appropriate range of < 0.30 nmol/L for sampling in the supine position is applied, the result of 0.49 nmol/L is still a borderline result that rules out pheo as a cause of these symptoms?
My immediate concern is whether it is safe to undergo an EGD without a blockade given these results, especially since the EGD procedure here uses fentanyl which, I take it, can stimulate catecholamine result from a pheo.
Thank you
Summary of symptoms: From August 2009 to July 2010 I had frequent episodes. Four of these were recorded on an event monitor showing sinus tachycardia of 120-125. From July 2010 to January 2011 the episodes declined in frequency. There were 4 episodes, all occurring at night either by waking me up or immediately after awakening. I took BP readings during each episode which lasted from 20 minutes to 1 ½ hours. Maximum HR was 144 beats a minute; Maximum Systolic 152; Maximum Diastolic 101. Sensations of increased heart rate or “flutter” and increased urination were the only symptoms. There were no symptoms of sweating, undue anxiety, trembling, dizziness, etc. For more than a year, from January 2011 to present I have had no sustained episodes and none with sensations of increased heart rate. However, from October 2011 to the present I have had frequent episodes of skipped heart beats during the day. These are brief, sometimes occurring daily: intervals of days without a skipped heart beat range from one day to over a month.
Summary of tests:
1. May 2010 Two positive 24 hr catecholamine results (during spells) epi 35 mcg/24hr on lst test; epi 38 mcg/24 hr on 2nd test.
2. August 2011 Plasma free metanephrine fraction positive@ 146 pg/mL (Lab Corp non- fasting, seated position with venipuncture). (normetanephrine normal @90 pg/mL)
3. 24hr Urine Fractionated Metanephrines test results (Mayo Lab): metanephrine: 159 mcg/24 hr (reference range 44-261 normotensive) normetanephrine: 269 mcg/24 hr(reference range 148-560 normotensive) An earlier 24 hr test in July 2010 (Lab Corp) had negative results of metanephrine 223 mcg/24hr; normetanephrine 189 mcg/24 hr).
4. Two Mayo Plasma Metanephrines tests in 2012. These were not performed using Mayo’s standard procedure of testing in the seated position. Samples were taken in a supine position, with indwelling canula, after 30 minutes rest. Results: 1/9/2012 Metanephrine 0.52 nmol/L, Normetanephrine 0.55 nmol/L; 2/21/2012: Metanephrine 0.49 nmol/L; Normetanephrine
0.50 nmol/L.
Dear jhardy,
DeleteAfter reading the symptoms and labs, I would think that the likelihood of pheo is rather small. It should be safe to do the EGD from the pheo perspective. All procedures have their intrinsic risks and pheo crisis should not be the only concern.
Dr. Pheo
Dr. Pheo: Can you tell me if a person with the SDHB mutation is able to donate blood and marrow?
ReplyDeleteThanks as always,
Kate
Dear Kate,
DeleteI am not aware of any studies to show either way. It will be prudent not to. If there is a life-threatening situation that requires blood and bone marrow donation from you specifically, I guess it will be OK while understanding the potential risks of transferring stem cells containing SDHB mutations to the receiver.
Dr. Pheo
Dear Dr Pheo,
ReplyDeleteI am writing as I am diagnosed as hypertension with symptoms that correlates with pheo/para, including:
Hypertension
Tachycardia
Headache
Chest Pain/tightness
Sweating
nausea/vomiting
constipation/diarrhea
Hair Loss
Weight Loss (was about 94,95 kg max now 88,89)
Fatigue
Weakness in limbs
Muscular pains
I am a 30 yr old male on the obese side, my BMI is around 32 with little exercise. I used to smoke for 5 years but quitted recently, for about 5-15 cigs per day. My parents developed essential hypertension in their 40s or 50s. My BP has always been normal or below of 120/80.
I had a flu since after xmas and have been feeling unwell since. Minor Sinus Tachycardia was observed at rest about a month ago, where the pulse rate was >100 at rest, which returned to normal without medication over a few days. BP was 110/70 then. However, a few days later, my BP rose to 160/110 without any apparent recent, where I went to a cardiologist immediately and was put on medication (Norvasc) with limited effect (BP measured at clinic was 150/100, but was still 140/9x on medication). The cardiologist prescribed Exforge (5/80mg) a few days later and the BP has been lowered to around 110/80.
I was admitted to the hospital for checkup on a hypertensive package, which included renal MRI (for renal vascular stenosis and pheo), renal function test, thyroid test, cancer index, etc, etc, all returned normal.
I also did a CT coronary angiogram and that returned normal as well.
The only thing that showed up was slight fatty liver on the hepatic echogram.
My 24 hr urine results, however showed readings that exceeded thresholds. I did 2 sets of 24 hr urine test and the samples were about 4Ls each.
ReplyDeleteSet 1
Creatinine 68 umol/l (normal 71 - 115)
Creatinine clearance 1.66 ml/s/sq.m (normal 0.82 - 1.20)
172.3 ml/min/1.73sq.m (normal 85 - 125)
24 hr urinary protein 0.40 g/Day (normal 0.04 - 0.23)
Set 2 (in nmol/D)
Reading Ref (Normal) (w/Essential HTN)
Norepinephrine 561** 440 535
Normetanephrine 315* 240 350
Epinephrine 55 110 145
Metanephrine 132 275 370
Dopamine 2414 2570 3810
in umol/D)
VMA 30 41
*reading between normal and with Essential Hypertension ref.
*reading higher than both normal and w/Essential Hypertension ref.
As my test results are all normal with only the 24 hr urine test marginally elevated, my cardiologist said that I have no reason to be alarmed and intend to treat it as essential hypertension, despite originally suspecting secondary hypertension with the mentioned symptoms. However, he referred me to an endocrinologist for a second opinion, as he mentioned that there could be other endocrine conditions causing secondary hypertension, and also for her opinion to exclude the possibility of pheo.
Upon meeting my endocrinologist, she said that the possibility of pheo is not high. As most of the cases she came across have readings that are significantly higher than normal thresholds, and the renal MRI already exclude the possibility of pheo in the adrenal glands, meaning that it could only be extra adrenal paraganglioma) and theoretically the possibility of that is quite slim.
However, I was doing some research online and there were some studies showing that paragangliomas can often come with low readings since they are less active and secretory compared to pheo, and for they tend to secrete norepinephrine and not epinephrine. I guess the normetanephrine and metanephrine tests done here are less relevant as I did not do any plasma tests.
My endo said if I am really concerned, we can always order an MIBG or a PET scan do buy me that peace of mind. But I am wondering if it is necessary in your opinion? What are the costs and pros and cons of MIBG and PET scans when compared to one another in diagnosing para? Or should CT/MRI be used instead?
Oh I forgot to mention that I was on betaloc (50mg) a day to lower my heart rate as it went up to 120 bpm. gradually reduced to 25mg and now 12.5mg as the mentioned symptoms persist and the cardiologist although does not believe it is causing side effects, agreed to reduce the medication since I am experiencing discomfort. I ceased medication for 1 day from half dose and the pulse rate restored to above 100 at rest and thus now on quarter dose.
ReplyDeleteDear Al,
ReplyDeletePheo is unlikely. The concern of paraganglioma is understandable but not warranted. The paras are indeed less active than pheos. A biochemically inactive para usually does not cause your symptoms (or others except for mass effect). I would not recommend MIBG scan or PET because of low utility here.
If you snore severely, sleep apnea can cause similar symptoms.
Dr. Pheo
Dear Dr Pheo,
ReplyDeleteGrateful for your advice. My endo said pheo is not likely as well and it seems to relate to other conditions, such as sleep apnea as you mentioned and is ordering a sleep study. Would you mind advising if there are any other possible scenarios causing my current condition?
Should I be consulting an endocrinologist or other specialists instead?Thank you again.
Cheers,
Al
Dear Dr. Pheo
ReplyDeleteI should have posted my comment here but did so under September 17, 2011 following a previous communication with you. I hope you find it.
Ellen
Dear Ellen,
DeleteI found it and answered.
Dr. Pheo
Dr Pheo,
ReplyDeleteSorry for posting twice. I am not familiar with blogging so when my post was gone later I thought it was erased. I am now guessing it does not post to your site till you see it. best, Potluck
Dear Potluck,
ReplyDeleteI saw your post earlier. The suspicion of pheo is substantial. To avoid interference, you should do a test called "plasma fractionated metanephrines". I agree with imaging even now. You don't have to take too much precaution for the tests.
Dr. Pheo
Here is a pheochromocytoma support bulletin board that other readers of Dr. Pheo may find helpful:
ReplyDeletehttp://pheochromocytomasupportboard.yuku.com/
Hi Dr. Pheo, I'm back.
ReplyDeleteThis patient has higher catecholamines than ever, and the hormones are driving the patient more than a little crazy. Crazy temper, uncontrollable crying, horrendous depression. Patient currently on third week of Votrient at 75% dose. How can patient help control the hormones? It's getting bad. So bad, that sometimes, patient is ready to meet her maker and put the family out of their misery. Is there anything pheo patients with too many tumors to count can do about the tumors bursting into flames and releasing all the hormones? Current medications are phenoxybenzamine, cardura (?), pain meds - oxycondone/oxycontin, ativan 1 mg for daily anxiety attacks, and 2mg for sleep, tamazepam for insomnia. Patient is desperate. Treating oncologist is very nice, but not an expert, and will usually do what patient suggests. Please help. Before the crazy turns into a spiral into depression that may cause something stupid to happen. Patient needs to see an expert. can you respond privately? if not, that's okay. Please just respond any way you can. Thank you so much for being loyal to us pheo patients. Hope to hear from you soon. Partner has "compassion fatigue" (sick of me being sick), so support is of and on
Dear Pam,
DeleteSorry to hear that. I assume that chemotherapy and MIBG radiotherapy have been considered or tried. I would then recommend metyrosine (Demser) starting 250 mg three times a day. The dose can be titrated up quite a bit. The drug inhibits catecholamine synthesis. It does have its own side effects so you need to be monitored closely.
Best regards,
Dr. Pheo
There has been several cycles of CVD this year and two years ago. I am not MIBG compatible. I do have two kids to take care of. I've taken the Demser before. It put me on my back. What about Sandostanin (?)? Ive heard I hear that can help a person crazy and raging on catecholamines. Your thoughts?
ReplyDeleteYou can certainly try Sandostatin. You may want to start with the short-acting form; if it works, you can try the Long-Acting Release form.
DeleteDr. Pheo
Thank you. Is there any other medication out there that can be suggested?
DeleteCurrently symptomatic treatment is very important. You may already have tried avastin. You can also enroll in a clinical trial for metastatic pheo.
DeleteDr. Pheo
Dear Dr Pheo. I am a 47 year old female.
ReplyDeleteI have the SDHB gene mutation.
I have had extra adrenal paragangliomas 3 times before in my abdomen and pelvis. All over 2 inches. Size of the largest was 16cm x 20cm (quite large). 2 were excised. The last 2 were irradiated 18 years ago. (I also had Endometrial Stromal Sarcoma removed by hysterectomy 2 years ago. Supposedly caused by the radiation.)
During my follow up I have been found to have a new growth. It is only 1.8cm x 1cm. I have had a PET, CAT and MRI scans and all agree that it is a paraganglioma.
My problem is that my doctor (endocrinologist) thinks that there is no rush in following it up. It is now nearly 12 months since the first scan showed the lump. It is not fast growing at this stage.
It is ."..at the level of the aortic bifurcation sitting on the left psoas." I take that to mean that it is just below my ribcage on my left side.
I would like it removed. However, the doctor feels that as it is biochemically silent and it is not growing fast there is no reason to worry.
Does this seem feasible to you? (Or should I be looking for a second/third opinion?)
Also they also want me to have an MIBG scan. Is this going to tell them anymore than the previous PET, CAT and MRI?
I really appreciate your input as I am at my wits end. Previously my tumours were dealt with quickly, this time they are doing nothing. It is very confusing.
Thanks,
Sim
Sorry, I am from rural Australia.
DeleteThanks
Sim
Dear Sim,
DeleteI agree with your doctor in that you don't have to remove the tumor now. MIBG scan, however, is not needed. Here are the reasons:
1. The indications for removing a pheo/para in people with genetic syndromes such SDH mutations are either significant elevations of pheo biochemical markers or larger tumor size (>3 cm). The doctors do not want to rush the surgery because a patient may develop another tumor soon. If a pheo/para is small and not biochemical active, it will unlikely do a lot of harm and can be observed. After it is larger or biochemically active, you may get another small tumor and the two can be removed at the same time. You basically have 1 fewer operation.
2. If the PET is already, MIBG is unnecessary.
Dr. Pheo
Thank you. I really appreciate hearing that from someone else.
ReplyDeleteSim
Dr Pheo,
ReplyDeleteYou might be able to put this in perspective. A lot of the readings say something along the lines of:
"PGL/PCCs identified in SDHB-mutation-positive individuals require resection promptly because of the high risk for malignant transformation.
Prevention of secondary complications: Early detection through surveillance and removal of tumors may prevent or minimize complications related to mass effects, catecholamine hypersecretion, and malignant transformation."
I have read this in about 10 papers now. This quote is from "Hereditary Paraganglioma-Pheochromocytoma Syndromes" by Klein, Lloyd and Young 2008. NCBI Bookshelf
The paper below talks about biochemically silent metastatic Paragangliomas.
Biochemically Silent Abdominal Paragangliomas in Patients with Mutations in the Succinate Dehydrogenase Subunit B Gene
Henri J. L. M. Timmers, Karel Pacak, Thanh T. Huynh, Mones Abu-Asab, Maria Tsokos, Maria J. Merino, Bora E. Baysal, Karen T. Adams, and Graeme Eisenhofer
(J Clin Endocrinol Metab 93: 4826–4832, 2008)
All of this makes me think that it would be better to get rid of the PGL before it becomes nasty. I would really appreciate a balanced perspective on this.
Thanks,
Sim
Dear Sim,
DeleteI know where those concerns are from. Many people with SDHB (>50%) develop metastasis. Those who develop metastasis tend to have larger tumors already.
Whether to remove your small para immediately is somewhat subjective. It is not wrong to do that but it is not wrong to monitor it for a while. If you don't mind potentially having an extra operation, then remove it now to decrease the chance of metastasis. The key issue is to have a balance view on this, as you pointed out, so that your doctor and you will make a well-informed decision.
Dr. Pheo
Dr. Pheo,
ReplyDeleteRegarding your comment, "The real issue with a small pheo is that it can cause hypertensive crisis during unrelated procedures such as dental or surgical procedures." What type of dental procedures can cause hypertensive crisis? Does Novocain pose a problem?
Dear bgirl_nw,
DeletePheo crisis is unpreditable but luckily not very common. The best way is to delay the dental procedure until pheo is ruled out or removed. If you have pheo and need an emergency dental procedure, it is better done by a dentist with a reliable backup plan in case hypertensive crisis does happen.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteI have not been here in quite a while. I noticed, with interest, your latest figures on the percentage of people with SDHB, who will develop a tumor, is lower than previously thought. That gives me a little more hope for my grandchildren. Thanks for that information.
In my own family, I have discovered that both my identical twin, Eileen, had the gene, both our daughters have it and both my grandchildren. I was hoping all of us wouldn't have it, but it is not reality for now. We're screening regularly and that is good. Thanks for all your valuable information.
Frances
Dear Frances,
DeleteIt is nice to hear from you.
Best regards,
Dr. Pheo
Dr Pheo
ReplyDeleteI recently started Growth Hormone replacement therapy but had to stop with symptoms suspiciously like pheo - is there a known connection? Could the GH supplements have stimulated growth of a tumour or overproductions of other hormones?
Thanks
BA
Dear BA,
DeleteIt is possible that GH stimulates tumor growth, which is why GH is contraindicated in people with cancer. I am not aware of any reports on the effects of GH on pheo. The easiest way to tell is to measure plasma metanephrines to see if you have pheo.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteIn regards to functioning vs. non-functioning pheos, I was wondering what causes some people in the same family to have non-functioning pheo's and others functioning ones if all are SDHB positive?
You might remember my nephew, the fellow with Carney triad - his were not functioning. My twin sister and my grandson both had functioning tumors (my grandson had neuroblastoma) I take it my nephew's tumors would not show up on a urine test? How about the Blood Plamsa test? Would his tumors show on that test?
Thanks again for all your help.
Best regards,
Frances
HI Dr.Pheo,I am new here and scared a lot. I have a question, they think i may be have pheo but,i have mid back pain,detected mass is on right side by ivc and renal artery,pain is on right and mid back feels like pushing on my back,,is this sign of something is realy bad or this can be radiating pain.
ReplyDeletethank you
Dear nina,
DeleteYou do need to test for pheo. Pain is a common symptom of large retroperitoneal tumor.
Dr. Pheo
thanks Dr.Pheo for answer.ct scan detected 3 cm mass lesion right side near IVC,renal artery and abutting crura of diaphragm. blood test showed epinephrine 1400 and surgeon said it looks like pheo,now waiting for MRI result,but i have no abdominal pain only by rib right side,also right side back pain by ribs and sometimes in middle back,feels like in spine,sometimes upper back in shoulders,i am so scared,i am all alone in this country,working for kids ,they are not here,i am scared to know MRi result,this pain is because of something bad ? like metastases,i am soooo scared:(( please answer me if you can,how to recognize,this is not mets pain??,,, thanks a lot,sorry for my english,,happy new year!
DeleteDear Nina,
DeleteBack pain is a known symptom for pheo or para. Let's see what the MRI will show. The best way to know if the pain is caused by the mass is to see if the pain goes away after removal of the mass.
Dr. Pheo
Thank you ,happy new year to you,they said it can be paraganglioma,but everybody ignores my pain,they say that pheo dont have pain,but i have pain right there where the mass is and goes up by right side back and under shoulder and front under my rib..i think they dont know lot about pheo. i think i have to go somewhere else,but because i am new here in NYC i dont know where to go,to see right doctor,also i dont have insurance and i think i will go to bellevue hospital,i am so scared, thank you so much and i am sorry to bother.
ReplyDeleteDr.pheo i have one question,i have back pain as i said,its under my shoulder right side,now i am thinking it could be lung cancer? and my adrenal mass can be from that? ct scan says no intraperritonal lymphadenopathy,no ascites,no pulmonary nodules or mass,limited images of the lung bases are unremarkable,enhancing right adrenal mass,no evidence of metastatic disease or vascular encasement. what do you think ct scan can recognize difference between pheo and mass from lung cancer ? or they look same on ct scan? thanks for answering,,also my endo ordered test for cortisol,aldosteron,i have swelling around my neck,so i am scared reading all google staff about my back pain.could you please give me some idea what is raly wrong with me.
ReplyDeleteDear Nina,
DeleteLung cancer can not be ruled out. It is a clinical judgment. Your physician should determine the likelihood of lung cancer. You can do a simple chest X ray or a lung CT.
Dr. Pheo
Dear Dr Pheo, I was reading a paper by Ralph J. DeBerardinis(2009) entitled "Is cancer a disease of abnormal cellular metabolism?" I am interested in the affect sugar has on para growth. Is it feasible that a low sugar diet could slow para growth, or even stop it?
ReplyDeleteMany thanks,
Sim
(Australia)
Dear Sim,
DeleteIt is a complicated issue. There have been no formal studies on the effects of diet on pheo or para. To have a healthy diet (e.g. low sugar) is a good idea for every person.
Dr. Pheo
Thanks for the quick answer. Happy 2013!
ReplyDeleteThank you for answer Dr.Pheo,i did today x-ray,hope all be good...one thing thats bothers me is,i have 2 different ct scan readings about my adrenal mass,one says,spindle shaped mass .it may represent NET versus sarcoma versus carcinoma,other reading says 3 cm right adrenal mass,and that what i wrote in message above ,yesterday,so what could this mean,how to know which one is right,also i like to know what means spindle shaped?? it is always bad? and why other reading don't see that? thank you,i am worried for misdiagnosis.readings are not same..
ReplyDeleteDear Nina,
DeleteA spindle-shaped adrenal mass is not unusual and does not mean it is "bad". Radiologists often describe the same adrenal mass in different ways.
Dr. Pheo
Thank You Dr.Pheo. Now my endo testing me for Cushings,because of swelling above my collarbones,is that possible to have pheo and cushings together?? Thank You .
ReplyDeleteNIna
Dear Nina,
DeleteVery rarely a pheo causes Cushing's syndrome or an adrenal tumor can be a mixture of pheo and adenoma.
Dr. Pheo
Dear Dr.Pheo,my cushings test was negative,my chest x-ray was good and my MRI report said,it may be paraganglioma,or less likely shwannoma,also it says,characteristic of mass is benign,but cytology is recommended.
ReplyDeleteSo,i think now they know what i have,surgeon ordered for me MIBG test , but again,when i speak about pain ,all are wondering why i have pain....also i noticed right ear noises,like ocean sounds sometimes,it could be other tumor there in my ear? and if it is possible to have only one paraganglioma in abdomen,and nowhere else,also i like to ask You,because my tumor is extra-adrenal it means malignant,or some of them are also benign.Also i wonder if my pain under shoulder could be caused from other paraganglioma on that place?? but cant think about organ there,,bone?? rib? or it is just radiating pain,did You ever had that in practice? I am asking because all Doctors are wondering about my pain,it feels strange...
Thank You so much.
NINA
Dear Nina,
DeleteThe pain is a little too complicated for me to give suggestions.
Dr. Pheo
Thank You dear Dr.Pheo for Your answers and help. ,it means lot for me,how i see my pain is not normal?. is it possible to have mets pain? or pain from malignancy? it is under scapula,on right side and sometimes goes to spine,in middle.
ReplyDeleteAlso,may be You know what could be swellings above my collarbone,they are soft,like fatty mass.
Thanks again.God bless You.
Nina
Dear Dr.Pheo ,could you please give me some idea about paragangliomas,i like to know if Paragangliomas can be only in abdomen or they are always multiple? thank You.
ReplyDeleteNina
Dear Nina,
DeleteParagangliomas can be in abdomen, pelvis, neck, and chest. They may be single or multiple.
Dr. Pheo
What are the tumors called when they spread to the bones? This patient has metastatic lesions in the femur and skull.
ReplyDeleteDear Pam,
DeleteThey are called metastatic paragangliomas.
Dr. Pheo
Dear Dr.Pheo I had surgery month ago.they cuted 3 cm para laparascopic . I dont have any other lesions,no on liver,no bones,no lymph nodes. It was in abdomen solitary. Could you please tell me it means was benign ? It can be that,its cured and will not recurre? If you know any case that after surgery it was cured by anybody.thank you Nina
DeleteDear Nina,
DeleteThe recurrent (or metastatic) rate of abdominal para is higher than that of pheo (adrenal para). So you do need to follow up with biochemical test and imaging periodically. Having said that, more patients do not have recurrence than those who do. There are, however, no good predictors of whether a para tends to recur (or metastasize) or not.
Dr. Pheo
Thank you dear Dr.Pheo. I hope it will not recurre.thanks Nina
ReplyDeleteDear Dr.Pheo,
ReplyDeleteI have one question,my tumor was 3 cm ,so can You tell me how long i have this tumor? how fast are they growing,it is possible to assume somehow? it looks like ,i have it more then 5 yars ? or less.also i had since i was 16 headaches,like migraine,on one side of face and had pain,it could be my tumor is growing from that time?
Thank You
Nina
Dear nina,
ReplyDeleteAbout 15 years. A pheo grows about 0.2 cm a year. A small pheo, however, does not usually cause symptoms.
Dr. Pheo
Dear Dr.Pheo Thank You for your answer.
ReplyDeleteAnd i have one more question, what means 5 year survival? it means i have to live 5 years more only? or it means it could be recurred in 5 years,or this is only for malignant paras?
also how i see this tumors look to be more malignant then benign,what i read forums ,people talking only about malignant stories,i have to be in fare every day that its gonna come back for shore ? and is it possible to develop mets after years?even by diagnose i did not have any,at all.please if you have time,answer will be great.
Thanks god bless
Nina
Dear nina,
Delete5-year survival is a measurement of how aggressive a tumor is. A 5-year survival of 80% means 80% of patients with the tumor are still alive 5 years after they are diagnosed (or treated).
Recurrence or metastasis can develop years after the original pheo or para is treated.
Dr. Pheo
This comment has been removed by the author.
ReplyDeleteHi Doctor,
ReplyDeleteWould like to run some numbers by you regarding either pheo, or carcinoid syndrome. I have been ill for sometime in 2008 an endo stated carcinoid syndrome could be my health issue. I became very ill with a feeling of jumping out of my skin, flushing, fluctuating BP and heart rate. Very high at times with tachycardia then back to bradycardia. Doctor did a 72 hour urine test on me for carcinoid syndrome and then Metanephrines, Fract, LC/MS/MS Plasma Metanephrine. Results from 2008 are 52 pg/ml; Normetanephrine 204, Total 256 this lab reports the results as high. Ref. range for first test < or = 57. Which is in range. Next for Normeta range is < or = to 148 my reading is 204. Total Normets should be < or = to 205 mine is 256. I do not have the values of the serotonin test but it was considered high in 2008 as well. I will be seeing a University Endo this week for a 2nd opinion as I am unable to physically function without severe difficulty. My thyroid gland is shot. Hypo levels are running normal and then shooting to 27. Mother had a pituitary tumor, We are a family with multiple endocrine disorders. Should those prior tests been an indicator of a problem?
Thank you for your time.
D
Dear D,
ReplyDeletePlease let me know your age and sex. In general, the normetanephrine levels in 2008 were not high enough to suggest pheo.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteI have been on Tramadol for 5 years for Lupus and other pain. Can the seratonin from the Tramadol cause Carcinoid tumors? Thank you so much for your incredible service to us.
Dear Anonymous,
DeleteIt is unlikely. The serotonin effect by tramadol is limited to the brain and does not spill over to other parts of the body because of our body's natural protection: the blood-brain barrier.
Dr. Pheo
Hello,
ReplyDeleteHealthline just designed a virtual guide of how atrial fibrillation affects the body. You can see the infographic here: http://www.healthline.com/health/atrial-fibrillation/effects-on-body
This is valuable med-reviewed information that can help a person understand the effects of afib of their body. I thought this would be of interest to your audience, and I’m writing to see if you would include this as a resource on your page: http://drpheo.blogspot.com/2012/01/presidential-tumor.html
If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternative to help get the word out.
Thanks so much for taking the time to review. Please let me know your thoughts and if I can answer any questions for you.
All the best,
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p: 415-281-3124 f: 415-281-3199
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