Traditionally, patients with pheo are treated with
medications to block the alpha adrenergic receptor (alpha blockade) before
surgical resection for longer than 2 weeks. alpha blockade has worked very well
in the past 50 years to prepare patients for surgery. On the other hand, whether
alpha blockade is really needed has been questioned for many years. Do we need
alpha blockade?
Indeed, there has not been a randomized clinical trial
comparing alpha blockade and another regimen without alpha blockade. Strictly
speaking, the answer to the question whether we need alpha blockage is unknown.
I believe in alpha blockade based on the long history of effective use,
successful personal experience, and some evidence that alpha blockade reverses
pheo-induced cardiomyopathy. In addition, I find 2 important flaws in the
arguments against alpha blockade.
Flaw 1: Other medications control blood pressure just as
well. As I explained in earlier posts, the goal of preoperative preparation is
not just to control blood pressure but to treat and prevent pheo-induced
cardiomyopathy. The most devastating complications of pheo are cardiovascular
catastrophes such as congestive heart failure, cardiac arrest, severe
arrhythmia, myocardial infarction, ventricular thrombosis, and stroke. Most
patients who present with those complications have no history of hypertension
but they are the ones who most need preoperative preparation.
Flaw 2: Nobody dies of pheo resection, regardless of the
preoperative preparation regimen. Perioperative mortality is the wrong
criterion for the success of pheo management. I have witnessed cases where
omission of preoperative alpha blockade in normotensive patients led to severe
postoperative complications and prolonged hospital stay. Postoperative length
of stay, complications, and quality of life are much more meaningful criteria
for the success of pheo medical management.
There is also a common issue in the arguments for and
against alpha blockade. Both sides seem to consider all the pheos and the
patients with pheo are the same. In reality, there is clear heterogeneity of
pheo and the patients with this tumor. A 2-cm incidentally identified pheo is
certainly different from a 7-cm one causing cardiac arrest. Likewise, a 30-year-old,
otherwise healthy patient is obviously different from an 80-year-old patient
with multiple comorbidities. Patients with low-risk pheo (< 3-cm) who are
otherwise healthy and non-pregnant may probably undergo adrenalectomy safely
without specific medical management. For the majority of patients with
intermediate- and high-risk pheo, alpha blockade is probably the best initial
treatment, until a randomized clinically trial demonstrates otherwise.
Dr. Pheo
My PGL has yet to be located. In the meantime they have found an occluded L vertebral artery, enlarged (4.5cm) ascending aorta and a possible stroke My BP was never below 150/95 on meds but and ace inhibitor seems to be helping. The migraines, imbalance, vision loss sweats etc are nearly unbearable. Have you ever hear of a pheo or PGL causing this bizzare trio of rare conditions? My Drs are stumped. Oh yeah, my C reactive protein was just checked at 11.5 (3 is the max they want to see) Thoughts??
ReplyDeleteDear Todd Fox,
DeleteThe vascular problems could be related to pheo but they can be separate problems as well.
Dr. Pheo
Dear Anonymous,
ReplyDeletePlease do not leave email or any other personal information here. I do not communicate with a reader outside this blog. You can simply post your test results anonymously.
Dr. Pheo
Thanks for creating this blog. I have many symptoms similar to the readers and the information has been a huge help in navigating this issue. I've had close to ten doctors tell me they are confused. While in the hospital specialist after specialist were not able to help or understand why I was having severe tachycardia. My cardiologist told me he Is stumbled too. He thinks a pheocromocytoma would have been identified on my ct scan. Went from good health to a long list of symptoms overnight. I made an appointment with a doctor on the list that I don't think I would have found on my own. My current doctor suspects a pheocromocytoma but admits he's never had patient with one. I am curious about what the c reactive protein and what significance that has. In the past providers have told me it has to do with inflammation and could be caused by allergies.
ReplyDeleteDear Niki,
ReplyDeletePheo is unlikely. The C reactive protein is an inflammatory marker and is elevated in patients with pheo. The C reactive protein, however, if not specific, and is elevated in many conditions.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteI am an optometrist who has some personal family experience with pheo. We had an 18 year old patient die from pheo 5 years ago from going undetected by the doctors then 1 year later that case ended up saving my own mother b/c the doctor's were more aware to look for it. In our small town of 1,100 we have had 3 confirmed cases. This makes me more aware looking for it b/c the 18 yo & my mother both had visual symptoms of "fuzzy" vision during their episodes. Today an 18 yowf presented with sudden loss of vision on her left side, last a few minutes then went away. She stated this has happened two other times this past month. She did get a headache afterwords, but what caught my attention is she stated a feeling of nervousness before or when these occur. Her visual fields were normal, optic nerves clear and distinct, 20/20 vision at exam. No other neurological associations or stroke type symptoms. I discussed with her likely it is migraine with aura but to see her PCP to work up for DM/low glucose, BP, thyroid, cmp, and possible CT scan. Would ruling out pheo in this case be a good differential to notify PCP about b/c it is still rarely checked here. Thanks for your input.
-Dr. J
Dear Dr. J,
DeleteIn children and young adults, visual changes are often the presenting symptom of pheo. Hypertension usually accompany the visual changes. If she has hypertension, I would strongly recommend ruling out pheo. If she does not have hypertension, then it may be optional.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteCould you please list the alpha blockers you recommend? Are there any you know of that are not also amines?
Thank you!
Dear Anonymous,
DeleteI usually use phenoxybenzamine. If not available, then I use doxazosin, prazosin, or rerazosin. Sorry but I don't know if they are amines or not.
Dr. Pheo
I am a 35 yo F. I have, at times, postural hypErtension. My BP and pulse jump all over the place. BP at night when laying down can go as low as 90/59 while standing can go to 150/115. I am not over weight. My pulse can go up to 120 upon standing. 4 years ago I was admitted in hospital with unexplained heart issues. Cardiac work up came up with nothing. POTS symptoms and unexplained high BP confusion sweating and sever muscle weakness in quads. The did find a mass like thicking on the pituitary infundibulum 4mm. They believe this is incidental as my labs were not off. They also found a large simple renal cyst. 5cm x 5cm. Again, they believe this to be incidental. I the left the hospital with BP meds aldomet and Hydralazine which sent me over the edge with one dose and back to the hospital within an hour with: Hallucinations tremors vomiting diarrhea confusion Severe headache. Next I was put on propranolol, I had a worse reaction to that! Same symptoms with added respiratory distress insomnia and a feeling my skin was buring off my back. I do not tolerate meds so for the last 4 years I have had none. Fast forward, I am now experiencing some of the same symptoms intermittent high BP (mostly diastolic) at times tachycardia feeling likes my chest will expolode feeling of doom and unable to walk from my car into CVS because I'm exhausted. I recently had another CT scan on 9/12 because of sever constipation and the results are this: left lower lobe 0.3 nodule. Well circumcised cyst within RT kidney 6cm x 6.5 cm. Today I had an episode after eating my lunch with vanilla almond milk (not sure of a connection) where I thought I was going to die. All the muscles in my arms and legs were heavy like I was wearing a lead suit. I was confused I could barely put a sentence together. Shaking. Crying. Severe pain at the base of the skull. Pale sweating hands and feet. Diarrhea. Resting/laying down BP 150/115 p 110. Episode lasted about 40 mins. I was seconds away from calling 911. I probably wouldn't have if I could have figured out how to do it. I haven't felt that bad in years. My question is where do I go next. Nephrologist (Neurologist) Endocrinologist cardiologist?
ReplyDeleteThanks E
Let me add: Factor V and protein S deficiency cyp450 gene mutation and had bad allergic reaction to Diltiazam. And paradoxical reactions to Paxil, propranolol, aldomet and Hydralazine (as listed above). And a severe sensitivity to prednisone. Was in ICU 5 days postpartum due to blood pressure.
ReplyDeleteDear Emma,
DeleteIt would be prudent to rule out pheo/para. Either nephrologist or endocrinologist will be appropriate.
Dr. Pheo
Is it possible to be born with a neck paraganglioma? My daughter has many para/pheo symptoms and was born with what the doctor diagnosed, by visual exam, to be a brachial cyst. Is it possible it could actually be para?
ReplyDeleteSymptoms include large fluctuations in blood pressure, syncope, cough, constant headache, lethargy, grey appearance to skin when feeling an episode.
So far all tests have been normal..egg, echo, blood work, brain MRI.
Dear Jen,
DeleteIt is possible to be born with a para. Most neck paras, however, do not secrete enough catecholamines to cause symptoms.
Dr. Pheo
Dr.Pheo,
ReplyDeleteI am from Hyderabad city in India.
H/O: CKD,ESRD, Renal Transplant in year 2008 and Post Tx graft failure in 2010.
Accelerated HTN and now surviving with the support of Hemodialysis for more than 6 years.
Presently cant Tolerate Hemodialysis because of hypertension and getting tremers may be due to severe vascular constriction.
I have been Suffering the symptoms of Pheochromocytoma, unable get proper diagnosis,
few queries to get clarify from you.
1.need YOUR advice about what blood tests to done (No Urine out put).
2.I am using5-6 types of BP Medicines
Nicardia retard 20mg ( 4 times a day)
Nebivolol 5mg (2 times a day)
Prazosin 5mg (2 times a day)
Clonidine 100mcg (3 times a day)
Olmesartan 40mg (once a day)
I am not feeling any benefit of Clonidine, shall I continue Clonidine or not? Any above drugs are contraindicated for Pheo?
(only Nicardia20mg is working on me. Also Nebivolol may be on heart rate)
3. Since I am not tolerating Hemodialysis, Can I opt Peritoneal Dialysis? Hope you have experienced any patients like this.
My doubt is if Pheo exists, will the symptoms get worse during Dialysis? because of the clearance/ Ultrafiltration, will the tumor over response?
I am very grateful to see your Blog and feel like God is only running this and hope your guidance will give a direction to my diagnosis.
Thank you once again...
Adding to the above,One more doubt:
ReplyDeleteIn my city, one super specialty Hospital has the facility for doing 68Ga-DOTA-TOC PET/CT
I read some where, 18F-DOPA PET/CT is done for to localize PCC/PZL.
Your opinion please...
All these Scans are very costly and I have to pay by my self...
So request you to suggest the series of tests in this diagnosis(just keeping the cost in mind).
for example, if plasma free metanephrines value is just above the upper limit but the symptoms are severe so will it be worth going for these high cost scans? or better waiting for some more time?
Thank you Doctor...
Dear Murali,
DeletePlasma metanephrines are the best test for pheo, especially in people with kidney problems.
I am sorry but I don't know enough to answer your other questions. Let's see the plasma metanephrines results before discussing the imaging.
Dr. Pheo
Dr.Pheo,
ReplyDeleteplasma free-metanephrines report came.
the reported value -25.3 pg/mL (< 65 normal).
the Blood sample is transported to other city and tested after 30hours.
will it have any impact on the result?
please share your opinion.
Thank you
Dear Murali,
DeleteMetanephrines are stable. The results make pheo unlikely.
Dr. Pheo
Hi, Dr. Pheo,
ReplyDeleteMy PCP has suspected pheo in me (not a strong suspicion, but still a suspicion). Two times when I have had parosxymal hypertension, tachycardia, and sweating he's had me do a 24 hour urine collection. I don't exactly trust the negative results because by the time I got the jug from him each time my symptoms had passed, and the jugs did not have preservative in them. Also I take a low dose of bisoprolol (a beta blocker, but not commonly used in the US) at 1.25 mg for what has been described by my cardiologist as "POTS-like symptoms." And I've read beta blockers can interfere with the test. I once had such bad paroxsymal hypertension (like 160/110, when it's normally 120/70), sweating, and shortness of breath that I went to the ER, and when I was there I asked for a plasma metanepherine test that they very reluctantly did. That was sent out and came back negative. Is that enough to rule it out? Again I was on a beta blocker at the time. I also had an appendectomy and before that I had a CT scan of my abdomen. If I had a pheo, would the CT scan pick it up? I asked my PCP that same question and he said they can "hide" especially if you're not looking for them. He think it's unlikely I have pheo but never ruled it out. He did not seem to be familiar with the plasma metanapherine test I asked for in the hospital. I can't say that I know for sure whether it was taken correctly (I read there are very specific methods but it seems like those are to avoid false positives, and mine came back negative). Thank you!
This comment has been removed by the author.
DeleteForgot to mention cardiologist believes he has ruled out significant plaque-based heart disease or heart failure based on stress test, echocardiogram, Holter monitor, regular EKG, and a NT-proBNP test. At each hospital visit troponin test was negative and EKG was sinus tachycardia.
DeleteDear Marcus,
DeleteThe normal plasma metanephrines and unremarkble abdominal CT make pheo very unlikely.
Dr. Pheo
Could you please advise me of a pheo expert in Michigan?
ReplyDeleteDear Anonymous,
DeleteYou can see Dr Richard Auchus, University of Michigan, Ann Arbor.
Dr. Pheo
Thank you so much. I really appreciate your insight in an otherwise rather unknown topic. I am patiently awaiting my ct scan results after having total urine metanephrines over 3350+. Thank you.. Thank you!!
DeleteDear Dr. Pheo,
ReplyDeleteWish I had found you 4 months ago, or even years ago! I have a very unique situation, wondering if you have any insights. I will apologize in advance that this is (very) long. Most doctors throw their hands up in the air when they see my case—to include alternative doctors.
I have always tested slightly high for HBP, as a child, teenager, young adult. No one ever did anything about it; was never put on bp meds. I moved to a big university town with a medical program in 1997 when I was 29; for the first time ever, the doctors were “all excited” about my HBP and started putting me on drugs.
Thing is, I doctored with my cardiologist for 10 years (ages 29-40). He had me on spirolactone, hydrochlorothiazide, and at least one other bp med (metropolol, labetalol [made me break out in an all-over body rash], amolodipine besylate, and a few others that I don’t recall at the moment). Being on 3 different meds never got my bp under 140-150/90. I had HBP while pregnant with my daughter; she was delivered 3 weeks early due to pre-eclampsia in 2000. I was on a very high dose of labetalol during pregnancy as well as afterward b4 suffering from the reaction. In Feb 2008 I had an issue where my bp went extremely high and suffered a lot of the pheo symptoms; landed me at the clinic afterhours as well as in the ER. My cardiologist ran a lot of tests (but NEVER took me off any of the 10-12 pharma meds I was on, so I have no idea how accurate any of the tests actually were) but couldn’t find anything and decided to kick me out of the clinic. Yeah. Nice guy. Not once did he ever send me to a specialist to see if there was something he was overlooking.
Since then, I’ve mostly turned to alternative medicine/doctors. Changed diet. Eat organic. Took out all pharma and OTC drugs from my life. Eat vegetarian/Paleo. Discovered casein allergy and soy/gluten intolerance. Fixed leaky gut and severe malabsorption. Discovered I had moderate Adrenal Fatigue and recovered. Discovered I have +/+ and +/- of CYP2D6 (and most of the 10-12 pharma drugs I had been on/HPB meds use this pathway), I am compound heterozygous MTHFR, and I have been chelating for severe heavy metal toxicity since April 2015.
During this time, I never really had any issues with HBP that I know of (but was not actively watching it closely), or it would spike, like when I had a thrombosis hemorrhoid/in-clinic surgery, bacterial bursitis in my right elbow, etc., but then it would go right back down again. I had an excellent BP reading in Aug 2015 of 126/84 and again in Aug 2016 of 120/78.
In Oct 2016 I went to my new allopathic Internist doctor to get a referral to have umbilical hernia surgery (my 2nd hernia surgery but a completely separate one). My bp was 180/120. Surprised the HELL out of me. I had had no symptoms up to that point except for episodes of all-over body hot flashes/facial redness/flushing, which I thought was normal, as I am (now) 49 years old and close to perimenopause stage. (Except hypertension doesn’t usually occur until AFTER menopause and estrogen has decreased.)
Then I had a CAT Scan done in Nov 2016 to find where the hernia was: bp 180/113. Then surgery the end of Nov 2016, where they had to use bp meds because it was too high to do surgery without them (don’t know numbers, didn’t have anything to write them down with). I did tell the anathesiologist that I have compound heterozygous MTHFR and should have no nitric oxide; whatever she did worked beautifully, because I had the best wakeup after surgery I have ever had (before I had had trouble coming out of the anesthetic).
So I assumed that the bp was due to conditions/issues with the hernia-like pain and surgery and such and, like always over the past 8, 9, 10 years, it would go back down afterward.
ReplyDeleteWrong. My BP has remaining sustained at a very high, constant, persistent level since then. I saw my OB/GYN in Jan 2017, bp 182/120. Then I took it upon myself to do everything in my power holistically (even more than I had been doing up to this point) to bring down my bp, because I was being repeatedly told that I have “essential hypertension” and I have always, always managed to bring the bp back under control holistically myself. (Plus, aren’t blood pressure medicines supposed to actually work on essential hypertension?). My new doctor is adamant that I have essential hypertension and we just “have to find the right pills” and “the right doses.” ARGH! Being on a high number of pharma drugs already completely wrecked my body once and I spent years repairing it; I am not interested in having a complete and total collapse again!
I need to find out what is going on!
Well, this time, working on my blood pressure holistically isn’t working, no matter what I do, no matter what PROVEN things I have done to get rid of the HBP in the past. Some random bp readings: 2/6/17 205/114 pulse 76; 2/7/2017 184/100 pulse 81; 2/10/2017 193/114 pulse 76; 2/14/2017 211/114 pulse 82; 2/15/2017 206/117 pulse 82; 2/16/2017 207/113 pulse 90 at home, and 180/120 at doctor’s office.
My doctor started me on 50 mg Losartan on 2/16/2017 (she refused to help with any labs unless I went on a pharma BP drug), and I took the 24-hr urine test for catecholamines that weekend.
Since starting BP med on 2/16/2017—which I told her wasn’t going to help me, as no matter how many bp meds I was on before, they never brought my bp down any lower than 140-150/100 (my bp is always high on meds). 2/20/2017 197/109, pulse 77, 2/22/2017 177/109 pulse 106; just took it at 11:20 am on 2/23/2017 and it was 185/111, pulse 80. Since being put on Losartan, the lowest my systolic bp has been was 163 and the lowest the diastolic bp has gotten was 103.
I am concerned that the tests she is doing to test for pheo are going to come back not perfect, as for the 24-hr urine catecholemines, she did NOT tell me that there were a whole bunch of foods and caffeine and such that you had to refrain from taking, otherwise they would skew the test results.
In 4 weeks I am to go back to have the plasma catecholemines test taken (again, I will assume I need to refrain from these foods/caffeine in order not to skew this test) as well as, I think, the AAR test (aldosterone-angiotensin-renin)—WHICH I just found out that Losartan will skew the results of that test as well. There are only, like, 5 HBP meds that are safe and won’t skew the results of the AAR test.
I did ask my doctor to see an Endocrinologist right away, so I could get tested and work with him/her, and I had found one through a special Hypertension program in my town, but apparently, he doesn’t work with “hypertension”—even though he is listed as one of the specialists for this special program. Sigh. So I was shot down and have to go through my doctor—who has seen, like, 3 people with pheo in her entire medical career. She doesn’t believe I have an outstanding/Secondary Hypertension issue—even though my bp started at a very young age and my bp is not/cannot be controlled with 3+ BP meds. I HAVE found endocrinology experts through the university here—and 2 of them actually have on their sites that they work with pheos—so I am keeping that in mind for when I find out my test results.
The only symptoms I had at the beginning (Oct 2016) were the sustained high blood pressure and the body hot flashes/flushes as well as a red flushed face that seems to always be there—which I thought were perimenopause and so sort of dismissed them. As these past 4 months have gone by, I have acquired additional symptoms: nausea after I eat, lots of burping and flatulence, weight loss (5 pounds since Oct 2016, and I am not trying to lose), clammy skin/cold skin (esp fingers get freezing cold), anxiety, nervousness, panic, esp a feeling of impending doom or high-strung as a wire, rapid pulse (a couple times now where pulse has been over 100), some chest pains, can get rapid breathing, have issues with my eyes, sweating during the hot flushes but also between 3:30-5:30 am (I also get a racing heart and the impending doom/anxiety), flushing, have ALWAYS had issues with constipation (even though I eat organic foods that are supposed to HELP with constipation), and the Paresthesia has gotten really bad (tingling, prickling, numbness, and BURNING sensation in my fingers/tips. The burning and numbness/cold go back and forth in my fingers, and my toes usually are just cold and numb). I have had issues with cold and cold urticaria-hives as well as photosensitivity since the age of 10. Only very recently have I begun to have some issues with mild headache.
ReplyDeleteOther than the constant high BP, all the other symptoms come and go during the day, and I don’t necessarily have them every day.
I have had high enough BP readings that I should have probably gone to the ER, but I refrained. 2/6/2017 205/114; 2/13/2017 197/114, pulse 81; 2/14/2017 211/114, Pulse 82; 2/15/2017 206/117 pulse 82; 2/16/2017 207/113 pulse 90; 2/20/2017 197/109 pulse 77; 2/21/2017 191/111 pulse 89; 2/22/2016 177/108 pulse 106 (tracycardia).
Nov 2016 labs: The CAT Scan abdomen and pelvis w/contrast came back good (keep in mind, they were only looking for a hernia). Did say there were a few soft tissue nodules near the splenic hilium. My CBC panels were unremarkable, other than high RBC, Hemoglobin, and Hematocrit. Metabolic panel: Sodium 141 mmol/L, Potassium 3.6 mmol/L, Chloride 101 mmol/L, BUN 6 mg/dL, Creatinine, Serum 0.70 mg/dL, Calcium 8.9 mg/dL. Glucose was 89 mg/dL, GLR was 89, so my kidneys are good.
I don’t know if having surgery provoked/is sustaining whatever is wrong.
I don’t know if the physical therapy and the daily exercises I am doing since surgical clearance are affecting my BP. (CAT Scan showed I have little to no right abdominal muscle—which might account for 2 hernias. As well, the Physical Therapist found that I also have fairly bad diastasis rectori. So my abdominal muscles must be built up so we can see if that will help prevent any future hernias). However, since working on this, I now have nausea.
Should mention that my mother has lots of issues with HBP and not being able to control it with BP meds. She perpetually always has a red flushed face.
Curious if a long period in episodes is unheard of (in my case, 2008 until 2016, with maybe slight episodes when extreme pain/medical issues have occurred). Curious as to why my high bp wouldn’t go down on drugs, but did when I was living clean. Curious as to why now—all of a sudden, with absolutely no changes in diet, lifestyle, no major medical issues before the surgery and no major emotional upsets—my bp would suddenly go majorly, majorly sky-high—and stay there and won’t come down.
If this does not sound like pheo to you, can you give me some thoughts?
Also, HOW do I make it so that I can be alerted to when there is any new responses/updates on this?
ReplyDeleteDear Perplexed,
ReplyDeleteYour local university endocrinologist should reach a clear conclusion after reviewing the plasma metanephrine results (they should order the test) and the abdominal and pelvic CT scan images. Pheo that causes blood pressure fluctuations are usually pretty large.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteThank you for creating this blog. I have enjoyed reading every one of your posts!
I was diagnosed with follicular thyroid cancer in 2008. However, in 1988, in my late 20s my thyroid problems began. A sudden large growth in my neck was deemed benign. However, it continued to grow, and during my 1st pregnancy in 1990, I began to have difficulty breathing and swallowing food. Eventually, in mid-1991, I had a total thyroidectomy, after difficult intubation. Pathology called it follicular hyperplasia “toxic goiter” with no microscopic description of the cells. The gland re-grew on both sides over the years and was biopsied by FNA and core needle multiple times - always reporting benign findings. Finally in 2007 I went to a major university center and was diagnosed with metastatic follicular thyroid cancer, after a second total thyroidectomy. I have been treated with 3 big doses of RAI and external radiation to bone tumors. I am on a high suppressive dose of synthroid, but my Tg tumor marker continues to rise.
Now on to why I am here. In follow-up for my cancer, a scan detected a .8cm adrenal medulla tumor in 2013. A subsequent CT noted HU<10. A more recent scan in 11/2016 noted HU to be 24, and it now measures 1.2 cm (1.5 unofficially by another doctor). I tolerated the high dose of synthroid really well until I was diagnosed with diastolic dysfunction in 2013 and was put on 12mg of metoprolol. My cardiac symptoms, mainly palpitations, would come back a while after the higher dose, and resulted in 4 more dose increases. I am now on 100mg/day (50mg bid). I have never had high blood pressure. In fact, a few times I have measured it and found it on the low side (90s/50s). I have had some episodes of severe headache. I am very light sensitive, and often have fuzzy vision. I always have to take water with me, and get dry mouth frequently. I have had episodes of impending doom, sudden, and not related to anything emotional. My cardiac symptoms have been somewhat scary lately. In the last two months, I had an episode where it felt like my heart stopped briefly. After a deep breath, it started again with a big heave. I have also had pounding heartbeats and fluttering heatbeats. On a 12/2016 PET scan my heart took up a lot of FDG.
My father died from CLL, and his brother from cancer in his 50s. While they didn’t have heart problems, their mother had labile high blood pressure and died of a stroke at age 71.
My labs for catecholamines and metanepharines were all normal, but while most of them were on the low side of normal, norepinephrine measured 457 (86% of normal). I haven’t done the 24 hour urine catecholamines or metanephrines or VMA. I also have pancreatic cysts, two lung nodules and a small kidney spot. I had a large lump on my left neck under my ear that was removed surgically in 2010 with other lymph nodes. It was negative for thyroid cancer and lymphoma and many mass spect tests were done which were also negative. The surgeon however told me that he felt sure that it was pathologic from its appearance, that it was black in color. There was no microscopic description, and the slides are lost.
My cardiologist seems to blame the synthroid for my recent symptoms. I have worn holter monitors that haven’t caught any arrythmias. I am going to wear another monitor for 48 hr. I am concerned that my doctors are going to try to lower my dose of synthroid. This doesn’t seem wise to me since my cancer is growing. Lowering the synthroid may result in a faster spread of the cancer. However, I am also very concerned about my heart symptoms. I am wondering if the adrenal tumor could be consistently producing (an 85% of normal amount of) norepinephrine. If so, that, combined with the synthroid may be too taxing on my heart. What further tests could we do now, and what do you think of all this?
Thank you, kindly,
Life is Good
Hello again, Dr. Pheo,
ReplyDeleteI forgot to mention that I also had a 1cm nodule removed from the GE junction of my stomach in 2012. This nodule had intestinal metaplasia. Another tiny, benign polyp was removed from my stomach during a followup EGD.
Thank you,
Life is Good
I have realized that there is more information that could be relevant to family history. My father also had two cases of colon cancer, several years apart, one I believe was very near the rectum, and he narrowly missed having a colostomy. My uncle's cancer at the time of diagnosis was widespread, and as far as we know, the primary tumor was not identified. My mother does remember, however, that he often indicated that he had stomach pain. Also, my youngest son, last year at age 16 was diagnosed with empty sella turcica after a brain MRI was done for migraines.
ReplyDeleteFinally, my latest PET has two spots of uptake in my colon (at the beginning near the appendix); an area of uptake in the stomach (near where the nodule was); and two axillary lymph nodes. I plan to reveiw with a NM doctor this week.
Any advice you may have for further testing would be much appreciated.
Thanks very much,
Life is Good
Dear Anonymous,
DeleteThe adrenal nodule may be a pheo. When a pheo is small, the biochemical markers can be normal. On the other hand, a small pheo usually does not cause problems unless it is provoked. I agree with your cardiologist that the levothyroxine dose may be too high. Your endocrinologist and cardiologist should directly communicate to have a balanced decision on the levothyroxine dose. Whether to remove the adrenal nodule should be determined by its relative significance of your overall health.
Dr. Pheo
Hi Dr. Pheo,
ReplyDeleteSix months ago I took an herbal supplement for my gerd. It had licorice root. Since then I have not been the same. My bp will fluctuate. Normally it is 110/73 it can raise just a bit but I feel a lot of symptoms. It'll drop back down in a few mintues. Aside from those episodes I feel fatigue, palpitations, very noticeable skipped heart beats, muscle cramps, and feeling unsteady when walking, tinnitus.
My doctor is dismissive about my symptoms. I am 27 and was very healthy before I took the supplement. I onpy take zoloft for anxiety but for two years my anxiety has been no problem so much that I was going to taper off it until this problem. I am going to try another doctor. My own research has led me to your blog. Could you suggest some tests or maybe point me in a direction? My life has been on halt because of this.
Dear Anonymous,
DeleteLicorice can cause hypertension. If you have not taken licorice for a few months, the licorice effect should be all gone by now. Herbal supplement can contain other materials that may have health consequence. I don't know much about herbal supplements in general.
Dr. Pheo
Thank you for replying. I have suspected that the herbal supplement might have other substances. I am going to try to get more in depth testing. Please wish me luck
ReplyDeleteGood luck!
DeleteThank you, Dr. Pheo for your response.
ReplyDeleteI am not sure I understand what you mean when you say "whether to remove the adrenal nodule should be determined by its relative significance of your overall health." Are you saying that if I am healthy enough for surgery, and if the cancer prognosis is good, I should have the adrenal nodule removed? My doctors say I am doing good, so should it be removed without further testing, and if so, how soon?
Thank you,
Life is Good
Dear Anonymous,
DeleteExactly. Also you need to accept the diagnostic uncertainty because the final diagnosis may not be pheo.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteThank you, again for your reply.
Well, my doctors decided to do an MRI. I don't have the report yet, but this picture is from the last series done after contrast. I don't know what I did to make it hazy, and I can't seem to undo it. I hope I picked the right picture, and I hope you can see it:
/Users/Jennifer/Desktop/Screen Shot 2017-03-24 at 4.16.06 PM.png
What do you think?
Best,
Life is Good
Dear Anonymous,
DeleteA screen shot of MRI is impossible to interpret. You need to use a professional software and view multiple images obtained with various protocols.
Dr. Pheo
Thank you again, Dr. Pheo. I was very relieved to read your comment that if I am up for the surgery I should have the adrenal removed. I have wanted to have it out for some time. My doctors have taken a "wait and watch" approach. I am very frustrated. I haven't heard from anyone since the MRI, but I received the report in the patient portal. The clinical indication for the MRI is "benign neoplasm of the left adrenal gland and history of metastatic follicular thyroid carcinoma." The findings state "Slightly enlarging left adrenal nodule now measuring 1.1cm x 1 cm, previously 0.7 x.07 cm which demonstrates loss of signal on out of phase images compatible with adrenal adenoma (series 6 image 22)." My CD of the MRI does not have numbered series and images, so I cannot find that image.
ReplyDeleteI thought the change in HU in the previous CT indicated possible malignancy. I was told that "metastases beget metastases", so even if this isn't a pheo, shouldn't this come out, or at least be biopsied as soon as possible? My daughter is getting married in mid-June. Is there still time to take it out and recover before the big event? Can you please help me? May I send you the CD? Would you talk to my doctor?
Regards,
Life is still Good
Dear Dr. Pheo,
ReplyDeleteFor whatever it is worth, I figured out how to identify the MRI series and image numbers. I have found the in and out of phase images referred to in the report. I see what the radiologist is referring to as loss of signal on the out of phase image. However, the mass looks heterogeneous to me. Is it accurate to call a heterogeneous mass an adenoma? I would be happy to include screen shots of these images if you would like. If so, please include instructions, as I was unsuccessful the first go-around. Also, could you please comment on the efficacy of MRI chemical shift imaging of adrenal masses with HU of 30 or higher on non-contrast CT. I read somewhere that in these cases, the MRI may not be diagnostic.
Perhaps the more important question I should ask is, could you please expand on why, or on what criteria I should have the adrenal mass removed? This will help me in discussing with my doctor.
Thank you kindly,
Life is always good, even when trying to be patient
p.s. BTW, I had an almost immediate severe headache with the administration of contrast during the MRI. I don't remember that happening before.
ReplyDeleteLife is Good
Dear Anonymous,
DeleteYour imaging findings are a little complicated and should be discussed between your endocrinologist and radiologist. I cannot further comment on the imaging.
Dr. Pheo
Hi Dr Pheo,
ReplyDeleteThank you so much for this blog. We live in the U.K. My son was diagnosed with hsp dec 2013. He started at this time with a headache. He had ongoing kidney involvement which is now low grade protein and blood in his urine daily creatin level now down to 60. They say his kidneys are functioning well and they monitor but no treatment given. He started 18mobths + ago with severe tachycardia of 150 + while resting , sweating, night sweats and palpitations. I took him to gp who suspected thyroid issues, this was slightly raised but even reviewed 4 weeks later was normal so no treatments.
The tachycardia, sweats etc continued and are now daily up to 7 x daily . Excercise and stress make them more frequent. The headache is described as pulsing on top of his head and although present all the time, increases dramatically during an episode.
Episodes last from few minutes to up to an hour at a time but he feels terrible after it for long times. He is constantly tired and goes to bed every night at 9! He is 14 years old!
He gets dizzy periods often and tingling on hands and feet on occasion when episodes happen. He also gets blurred vision but not every time. he has recently had MRI with contrast abs we are awaiting results but consultant didn't expect this to show any vasculutis. During our last consultation with neuro my son had an episode and the doctor suddenly changed saying it's rare but he could have Pheo. He is on 120mg of propanol to try helping the headache... initially helped a bit but headaches bad again now. On propanol His bp is 90/45 and pulse early 50's. When he has an episode it goes up to 128/84?pulse 90-100... but this is in 120mg of propanol. Bp doesn't stay raised for long periods. He gets achy muscles and tummy pain too.
He also shivering/ freezing/ clammy after episodes. Do u think this could be pheo?
I have crohns, my dad has psp and my mum type 1 diabetics... all auto immune like the hsp? Don't know if that's relevant?
Any help you could give I would be so grateful. He is trying to sit exams and can't concentrate, as he is having several episodes a day now. Many thanks Lynda
His tachycardia was 150 while resting prior to propanol and fe was put on this by gp 4 months ago for the headaches and she had tried everything else.
ReplyDeleteDear Lynda,
DeleteHe can simply measure plasma metanephrines to test if he has pheo.
Dr. Pheo
Thank you , I will ask him to do that.
ReplyDeleteBest wishes Lynda
Hi, can yo tell me if taking 120mg of propanol could affect the test?
ReplyDeleteThanks Lynda
Dear Lynda,
DeleteIt should be fine.
Dr. Pheo
Hi Dr Pheo.
ReplyDeleteIn October last year, I was 36 weeks pregnant and I had Dexamethasone injections to prepare me for delivering my baby early.
About 8 hours after the first injection I developed sudden onset tachycardia of 180 bpm. My bp was raised as well. They thought it was pulmonary embolism, but ctpa came back negative. From that moment onwards, my heart rate has been higher, bp higher (resting HR about 90bpm, bp was sitting 140/95ish). Two weeks ago, I developed increased hypertension (160/105) and my heart rate increased, resting to about 100, standing to 150). I haven't yet got my urine results back, I asked them to check for metanephrines, however I'm wondering if the test will be affected by beta blockers and antihypertensives? Specifically metoprolol (75mg) and perindopril (5). I was also being given a saline infusion at the time of 2 litres over 12 hours. I'm having an ultrasound of the abdomen next week, anything I should get them to check do you think?
Dear Penny,
DeleteThe beta blockers should not have a big effect on the results.
Dr. Pheo
Hi Dr. Pheo,
ReplyDeleteIt's been a while since I've written. No new members of the family diagnosed with anything...thankfully.
This is a pretty basic question...are pheo and/or para considered cancer?
It really doesn't matter to me except I know a lot of people do ask that question.
Continued success with your excellent blog and research.
Best wishes,
Frances
Dear Frances,
ReplyDeleteHope all is well with you and family.
Most pheos/paras are not cancer. Some are malignant (thus cancerous). The definition of malignancy is presence of metastasis or invasion.
Dr. Pheo
Thank you, Dr. Pheo.
DeleteDr. Pheo,
ReplyDeleteI'm a 40-year-old female. I have been experiencing symptoms since age 15. I have been diagnosed with insomnia, anxiety, depression, supraventricular tachycardia, and high blood pressure. At age 23, due to a response to mao inhibitor (severe sweating and headaches), my psych suggested going to an endocrinologist to rule out pheochromocytoma. My insurance company refused to cover a specialist and I ultimately chose not to go. Now my 19-year-old son is experiencing similar symptoms. Any advice you could give would be appreciated.
Thank you,
Anonymous
Dear Anonymous,
DeleteYou can ask your primary care doctor to order plasma metanephrines test.
Dr. Pheo
This comment has been removed by the author.
ReplyDelete