Pheo Tumor

[bebe127]

I was just going over some literature I have and I'm going to see my GP next week and hopefully get some tests taken for various issues. I was reading about pheo tumors and I pretty much have all the symptoms except the sweating part, although I do experience night sweats and go through periods of being cold one minute and sweaty the next.

Anyway, I have a question:

Has anyone been suspected of having kidney stones and it turned out to be a pheo?

This is why I ask. A few years ago when I first started seeing my GP (the only dr. I've found that knows what POTS is and attempts to treat it), we were going over my history and he requested an X-ray, if I remember correctly of my bladder, because of a history of bladder cancer with my dad. They found something on one of my kidneys and suspected kidney stones. He then sent me for an US of my bladder and kidneys and they reported that the test was unremarkable. That's where it ended. I'm going to ask that my GP about this and ask if he'll test me.

I was just wondering if any of you have gone through this before.

Thanks in advance

Be well,

Bebe

[Joann]

My doctors have told me you can have them for years before they are detected. They are can be difficult to find. I think if they aren't really big and not in a spot where they are moved/touched to excrete the hormones/adreniline/whatever it is that they excrete, they will not show as many symptoms. However, others have very dramatic symptoms and you can have very high bp with these.

There are several tests, a blood test, urine test, ct scan, mibg scan.

They are really rare though. I have also been told that hyper pots can present just like a pheo.

I have been told they are pretty sure I do not have one, after testing, although my MIBG had uptake in two places. But they also said it is still possible.

They have me on two medications that suppress pheos, but aren't necessarily good for hyper pots. The docs at CC want me to go off one of them, I tried yesterday with some pretty disastrous results. I am going to tell them I just can't experience that again, at least not while I am in the middle of this bad patch. I am thinking I may try and get them to agree to try the medications that are suggested for hyper pots. I think many people on this site have been tested for pheos and ended up having hyper pots, or some pots that present as hyper.

I am sure some of the more knowledgeable posters will explain more. Plus there are some posts on this.

Hope you are doing better

[bebe127]

Joann,

Thanks. Probably should've asked you first, becuase I know you've been going through this. I just started thinking after our last few talks and was reminded when I was going over some old test results that there was an issue with my kidney. They said it was nothing, but couldn't explain the spot on my kidney that they originally suspected might be a stone. I have suspected in the past too that I might have hyper POTS. I know lots of people, as well as you travel to CC or Vandy or other places, but that is just not in the cards for me right now or any time in the near future, especially with what is going on with dd right now. I guess all I can hope for is that my dr. is receptive to my inquiries.

Thanks again

[margiebee]

I was wondering about Pheo recently as well, I was wondering whether high blood pressure is one of those symptoms where everyone has it, because the articles were somewhat unclear. In other words, if I have some of the other symptoms (headache, pale skin, abdominal pain) is it worth looking into even if I have normal to low BP?

[bebe127]

Margibee,

Like Joann says, they are rare. I don't know about the bp because mine tends to run high. I don't have pale skin though since I live in a tropical area, we are pretty tan here most of the time. Also, like Joann said, one might present like a pheo but in reality might have hyper POTS. My problem is that I don't know either, whether I have hyper POTS or pheo or what. Here is an article about pheo's from Mayo: http://www.mayoclinic.com/health/pheochromocytoma/DS00569 , if you've already read it then just disregard.

As always if something is of concern to you, speak to your doctor about it.

Be well,

Bebe

[Guest Alex]

I've been worked out for a pheo - blood work, and urine analysis multiple times, abdominal/pelvic ultrasound twice, abdominal/pelvic CT scan. I did not gave an MIBG scan, but that is considered the gold standard for identifying pheos.

Tests have been negative for me and my BP stabilized once I came off midodrine and then florinef and I started lowering my salt and water intake (my dr suspected hypovolemia as a cause for my POTS but I am not sure that's correct). I never had high BP issues before being diagnosed, so in my case it was the meds that were doing a nasty number on me.

Based on what I've been reading and what my drs told me you don't have to have all those symptoms to have a pheo, but - like it's been said, these tumors are rare. Another aspect that may be worth mentioning - again this is what an ER dr told me so take it as is. He said that the BP readings in people with pheo are usually in the 180-200 mmHg range, so extremely high.

Margiebee, I believe I read somewhere that a high BP is a trademark for pheos, but you still might want to bring this to your drs attention and possibly get tested for one.

Bebe, not sure what to tell you about that spot on your kidney, but it may be worth investigating it.

Best,

Alex

[bebe127]

Thanks Alex,

I thankfully do not have that high of a bp, my highest has been 140's/100's and not sustained. My bp fluctuates all the time. Many times mine is in the normal range, but I still feel poopy and sometimes it can be higher or lower, but I still feel yucky.

I was dx. by a cardio with high bp and put on Norvasc 10mg. even before I was dx. with POTS. Even then though, my bp at the time was not even to 140's, I think my highest was 135/something (which now I realize isn't high). I had only been on the medication for 1 week when I had my first "episode". When I went into the ER, both the admitting dr. and the EP that I saw said that I didn't have high bp and to stop the Norvasc. My husband still questions to this day if that med lowered my bp to the point of having tachy. I'll probably never know. Although before going to the original cardio (the one that dx with high bp) I was experiencing hr in the 120's without doing anything exhausting. I hope I'm making some sense. I'm just so confused and I want answers!!! (just ranting). I'm sick and tired of being sick and tired. Previous to all of this, I was a relatively normal, healthy wife and mother.

BTW, after I tested positive during the TTT, the EP told me the only med for POTS was florinef, but he couldn't put me on that because my bp wasn't low enough (my bp actually increased) and if I took it then I would end up with high bp.

I just wish someone could tell me what's going on and what to do about it so that I can get on with my life.

[Guest Alex]

Bebe,

I wish I had some answers for you, but just so you know I've been deseperately looking for answers for almost 2 years now.

I've seen countless drs, I've been to the ER close to 30 times (most times because of scary side effects from pills) and I've taken more pills than I can count - I have a 'souvenir' large garbage bag full of empty prescription pill bottles.... I haven't even counted vitamins and supplements.

I too suspected ...and still suspect that my POTS was triggered by meds (particularly beta blockers and benzodiazepines) but I have no proof other than the fact that I am somewhat better now that I've come off those pills. My tachy was never a major issue before I started taking meds, but the few episodes I experienced scared me and made me think that I need to take pills.

Most of the episodes I'm talking about happened at night - I awoke in terror with nasty palps several times ... So it hasn't been a postural thing for me until I started beta blockers. Then I became bed bound and I admit to being severely deconditioned, scared, anxious, depressed, and dehydrated when I had my first TTT. In hindsight my HR was never too high during those 'pre POTS' episodes compared to what I've been through after I've been diagnosed. I guess I'll never know the truth...

I've posted in the past many many articles on POTS and many of those articles discuss a variety of treatment options for POTS. Florinef is only one of many and not everyone with POTS benefits from it. There is also a huge list of drugs and non pharmaceutical approaches to treating POTS on dinet's main site - I'm sure you've read those though.

Feel free to message me if you want me to send you some/all of my growing collection of POTS related articles (over 300 of them ) or if you just feel like venting/ranting. I too was a happy healthy wife ....and then....you know the rest of the story.

Hugs,

Alex

[Joann]

Margibee,

there are some with pheo that don't have high bp, but not very often. That is usually the biggest factor. I do get really high bp spikes. Like Alex, I have been to ER many times because of it. Unlike Alex and Bebe my high bp started prior to the bp meds, although I was on a ppi for supposed stomach issues. My symptoms and bp started rising and got really bad over a 9 month period, until I was bedridden and couldn't l even lift my head without my bp going up to 180/116. I am on two medications that are for pheos. I was doing pretty good, but recently I have had a bad spiral and it is spiking again quite bad, even on the meds.

But one of the docs at CC felt that I should try to get off one of the bp meds. Big mistake, my bp spiked to 170/100 within 7 hours of missing that dose. They may be mad at me but I went back on the meds. My MIBG was somewhat indicative of a pheo, then they did a ct scan and didn't think it was. The doctors have told me that sometimes it takes years to find them. So I often wonder if I do have it. Especially since I have problems pain and high bp when i bend, do stairs or sit sometimes. So I wonder if it is being pressed and causing it. But then again it just could be some other crazy thing.

It is always something to look at but, most will find they don't have it. Oh and there is a site/forum that gives personal accounts from people. Just google the entire name of pheo (not spelling it here) and it will pop up.

[MightyMouse]

Pheo is pretty rare--yes, we've had members who eventually tested positive for it. In the 10 years I've been here, I can only recall one or two. You can try searching the forum archives for pheo information. One of the doctors I saw at NIH, Dr. Goldberg, I think?, specialized in Pheo. There's information in the "help yourself" pinned topic, and he's also co-author of the book by NDRF that we have linked there--which is free and is all about the different types of dysautonomias and how to rule out various causes.

[Guest Alex]

If you've been following my posts, you know that I like to reference published articles so here you have a few on phaeochromocytomas.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1898690/

this one is a bit old - published in 1964 but it talks about phaeochromocytoma presenting as postural hypotension

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094542/

Hypertension in Pheochromocytoma: Characteristics and Treatment

Some relevant paragraphs, but the whole article is worth reading

The most common sign of pheochromocytoma is hypertension, found in approximately 95% of patients and related to catecholamine excess.[11] Clinical characteristics of hypertension vary and may show either a sustained or paroxysmal pattern.[12] In some patients, hypertensive paroxysms will occur in the background of sustained hypertension. On the other hand, a small, but significant proportion of patients with pheochromocytoma are normotensive. Pathophysiologic mechanisms of phenotypic characteristics of pheochromocytoma-related hypertension are discussed below. Additional symptoms seen in pheochromocytoma patients include headache, palpitation, anxiety, and sweating.[13]

Sustained hypertension strongly correlates with high levels of plasma norepinephrine continuously released from a tumor. Moreover, it was also seen that patients with tumors that predominantly and continuously secreted norepinephrine had higher 24-hr, daytime and nighttime BP compared to patients with tumors that secreted only epinephrine.[ 39] Patients with sustained hypertension were found to have high plasma levels of catecholamines during every measurement, suggesting a continuous rather than paroxysmal secretory pattern.[13] It is not uncommon, however, to observe a patient with baseline sustained hypertension presenting and fluctuating blood pressure levels as a result of short-term changes in catecholamine concentrations in circulation.[13] Children are also significantly more likely to present with sustained hypertension than paroxysmal hypertension. Evidence suggests that excess norepinephrine is stored in the axon terminals of the sympathetic ganglia and is released with activation of sympathetic nervous system, causing continuous vasoconstriction and sustained hypertension.[40] The presence of orthostatic hypotension may also occur in patients with sustained hypertension (especially those who also have elevated circulating epinephrine levels), and much less commonly in those who have normotension or paroxysmal hypertension.[13] Decreased blood volume caused by consistent vasoconstriction and diminished sympathetic reflex may be important contributing factors for postural hypotension.[41] Postural tachycardia combined with postural hypotension can cause dizziness, palpitations, and syncope when a patient changes from a supine to an upright position.

Paroxysmal hypertension occurred mostly in patients with high-levels of plasma epinephrine and is highly typical for MEN2-related pheochromocytoma.[13] Episodes of paroxysmal hypertension result from the sudden release of catecholamines by tumors and can be induced by multiple factors including physical activity, smoking, abdominal pressure, postural changes and anxiety.[43] Certain foods or beverages with high concentrations of tyramine (cheeses, beers, and wines), drugs (histamine, phenothiazine, or tricyclic antidepressants), and operative procedures with/without anesthesia can cause paroxysmal hypertension in patients with pheochromocytoma.[44] However, the majority of attacks are unpredictable and their frequency can vary from several times in one day to once in several months with attacks lasting from several minutes to over an hour. The sporadic release of epinephrine from these tumors may contribute to the fluctuation in blood pressure. Patients with paroxysmal hypertension exhibit dramatic increases in both systolic and diastolic blood pressure during the paroxysm.[13]

Rarely, patients will rapidly cycle between hypertension and hypotension. In one case, the patient’s BP fluctuated every 14 minutes with a BP ranging from 52/34 to 242/129 mmHg.[45] As with paroxysmal hypertension, these patients had tumors which secreted primarily epinephrine.[46] While the pathophysiology for this event is unclear, it is suggested that baroreceptors respond to a rapid rise in BP during acute paroxysm with activation of the negative feedback loop via both the sympathetic and parasympathetic systems, causing a rapid decrease in BP.[46]

https://www.jstage.jst.go.jp/article/internalmedicine1992/37/4/37_4_403/_pdf

Adrenocorticotropic hormone-secreting pheochromocytoma

Happy reading,

Alex

[bebe127]

Thanks everyone!

Alex, I'll try to read through the articles. I've only read the one from Mayo, but my concern is that they found something on my kidney a few years back but chalked it up to nothing, although couldn't explain what it was either.

The whole Florinef thing just goes to show you how much doctors know in my area about POTS...um...not much! That statement about Florinef being the only med for patients with POTS came from the EP that dx. me with "probably POTS" back in 2009.

It was one of the doctors in my GP's office (not the one I normally see) that suggested I be put on a BB, and I've been on it since. I can't say I'm any worse for it, just not much better either.

I want off this ride!! NOW!!

MightyMouse,

For some reason I can't search the forum using the search button up top. Don't know what the problem is.

[MightyMouse]

Try using a different browser if you can to see if it functions better. The other thing is that it may be working but very slow b/c of our host company. We will probably be porting the site over to another hosting company within the next few months which may speed up search capability