Topic: checking me for pheochromocytoma - worried...
tailz
Unregistered
posted
I talked Dr. B into checking me for a pheochromocytoma (adrenal tumor), and the more I read about it, the more it fits, and I haven't been wrong yet. I'll bet it spread, too.
I've been looking to see where it commonly spreads if it is diagnosed too late.
In 7 % of the cases metastasis occurs in more than one organs (2,26). Malignant tumor usually metastasizes to bone, lung, kidney and lymph nodules, and rarely metastasizes to the brain, skin, prostate, urinary bladder. Metastasis is seen in cervical (10,11,14,17), thoracic (20,21,23,24), lumbar vertebra (11,18,23,25), sacrum(18), bony structures and spine adjacent tissues (sympathetic chain, paraaortic lymph nodules).
I'm bummed. My lymph nodes have been enlarged for probably like a decade now, and they refused to biopsy them.
I had that very prominent blood vessel running from my heart, down my abdomen, to my groin - was that my aorta? I showed it to the doctor, and he blamed it on my being so thin, even though it was only one-sided and I was screaming it meant something. I still have a network of blood vessels visible in the skin over my heart.
I'm sorry, but when a thick blue line suddenly shows up running from a patient's heart to their groin, and a complex network of blood vessels appears directly over the heart when a patient is screaming 'I think I have cancer', you would think a doctor would dust off that Encyclopedia of Rare Cancers he read in medical school.
I had a liver lesion - I freaked about that, but my doctors weren't concerned.
I had a hemangioma at T11 on my spine - told it was normal, even though half of my pain radiates from that one spot just to the left of my spine in the center of my middle back. It hurt so badly I used to fall asleep on a heating pad and burn my skin.
My left eyelid still droops. Have I developed a brain tumor? A shrink laughed at me like I was OCD-ing - "Everybody's face is uneven."
I'm bummed though. I could die of hypertensive crisis during surgery to remove the tumor , all because nobody would listen to me. My blood pressure was 100/70 which is high for me. I think the only reason it is low is because I avoid all food that might elevate blood pressure or blood sugar.
Pheochromocytoma would explain the severe reaction I experienced during the SPECT scan of my brain, too. People with pheomchromocytomas can't handle exposure to the high magnetic fields of these diagnostic machines. Upon exposure to magnetic fields, I'm probably flooded with hormones.
He's also starting me on rifampin, but I'm going to wait until I get these tests done and Quest sends me a copy of the test results. What will rifampin do to my adrenals?
I asked him to run an aldosterone (high in the past), renin, plasma metanephrines (metanephrine, normetanephrine), 24-hour urine catecholamines and metanephrines. I requested the plasma metanephrines because sometimes the urine misses these tumors. I'm bummed.
IP: Logged |
Hubby had all those tests done you listed -- all were normal. This was 6 or 7 years ago when he first got sick and noone had a clue what was wrong.
Yes his hormones (DHEA, testosterone etc) were all out of balance. No matter how much he supplemented nothing ever got balanced out. His adrenals were being stressed out by all the tickborne infections. He was never diagnosed with othostatic hypotension but at the time he had numerous fainting episodes.
Getting rid of G.I. parasites so he could absorb food and nutrients and eventually getting treatment for tickborne infections has helped tremendously. Gaining back the 30 - 40 pounds of weight took a couple of years.
His DHEA levels are now normal. Haven't done a complete hormone profile in a couple of years, but sleep is pretty normal and mood swings are mostly in the past.
Hubby also has a small liver lesion (for last couple of years) and most recently found to possibly have a lesion on one of his kidneys as well. Pretty sure these are from Bartonella -- lots of medical literature to support this.
Hubby also has at least one hemangioma -- currently does not cause any pain. Have no idea if this is a birth defect or from some other cause.
Do want to warn you to start slow and increase Rifampin doses slowly. Many Lyme patients find this to be one of the most difficult antibiotics to take. Hubby has never gotten above 50 mg daily the couple of times he tried this in the past. Will probably retry this later this summer himself.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tailz,
Ahhhhh....a topic I know well. Actually this WAS one of my diagnosis's before being diagnosed with lyme. This was in the phase that they knew something was going whacky but had no clue what it was.
It was actually my Rheumotologist that decided to do the 24 hour normedinepherine test on me since I was having these blood pressure spikes, but I didn't have high blood pressure and when put on b.p. meds, it would go too low.
My spikes were what dr's were sending me to the E.R. but no idea why it was happening. So when I tested positive for a pheochromocytoma, they sent me to a doctor in research in Boston.
He did every scan he could think of and still couldn't locate the thing, even though my blood AND my urine kept testing positive.
He said they are really tiny and that you can locte them and know for sure you have one, but if they can't find it, that doesn't prove that it isn't there. Just that it can't be found.
So when I did every contrast and every machine possible to try to find this crazy tumor and still couldn't locate it, they decided to recheck 6 months later. I STILL was testing positive but they STILL couldn't locate it.
From there, I started having more and more neuro problems and eventually got diagnosed with Lyme and co's, but the FIRST symptom in my treatment to TOTALLY disappear was the blood pressure spikes.
I haven't been tested for a pheo since treatment since I'm on a new path but I do know that the various symptoms they thought were making them think pheo, are no longer with me.
This is NOT to say you do or don't have a tumor. Just that I can talk of the other side in that I contiously kept testing positive for it. Good luck in your search and let us know how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
I 'had' pheochromocytoma and was tested twice.
Tests were negative to surprise of my doctor at the time.
Well, it was Lyme not some pheochromocytoma.
Posts: 98 | From BC | Registered: Feb 2005
| IP: Logged |
tailz
Unregistered
posted
Thanks for your replies - I'm scared to start the rifampin. He told me 100 mg was the lowest dose.
Is rifampin usually covered by insurance? Is there a generic? I didn't even check on that. I hope it's covered because he said that minocycline won't kill bart. Cipro almost killed me, and Levaquin isn't covered.
I worry though about the pheochromocytoma. I was rear-ended by a tractor trailer in 1987, and after the ER doctor x-rayed my neck, he approached me with this grave look - the kind of look you would give a terminal patient.
He told me that I might want to get a CAT scan. He never told me why, and I started to cry - and he never told me to stop crying either. I was only 22. He was a friend of my father-in-law who had agreed to see me in the ER.
I asked him if whatever he saw was related to the car accident, and he said no, which freaked me out even more, but when I saw the regular doctor, he told me that I didn't need a CAT scan. I honestly can't remember - I know I've had scans of my neck and head both, but I can't remember if they were MRIs or CAT scans.
Would a pheomchromocytoma grow in the neck? If I had one in my neck or brain, would it show up on a neck x-ray?
Most of my symptoms are left-sided - my left knee is the only joint that hurts usually. The left side of my face is weak, both pupils are tiny, but the left one is worse, and the base of my skull and neck on the left and the left temple and forehead are where my headaches are usually.
They also found blood in my left eardrum two years ago, just after x-mas time. And later I developed that prominent blood vessel/vein running from my heart to my groin.
My daughter let me borrow a House DVD which I didn't watch until after I had requested these adrenal tests, so it wasn't the power of suggestion. The very first episode I watched though was about this guy on death row who had killed people when he would go off on these rages.
House suspected a pheochromocytoma and explained that the test needed to diagnose the tumor, an MRI, is usually painless. But he looked at the guy's tattoos and explained that for people with pheochromocytomas, it would be painful because the magnetic field is strong enough to suck the metals right out of his tattoo. Then they showed the guy thrashing and clenching his teeth inside the MRI imager.
This was how I had felt during my SPECT scan - as soon as she turned the machine on, I wanted to hurt someone. I had experienced the most intense pressure in my brain and a simultaneous urge to urinate, even though I had just gone, and I laid there in what felt like torture for 45 minutes, trying not to wet myself and arguing with the tech who kept telling me to hold still.
This is also how I feel upon exposure to power lines, cell phone towers, even my car and landline phone now. Maybe I'm being flooded with hormones upon exposure?
This would explain everything. I'm scared of surgery though - I had bleeding and healing complications after my hysterectomy.
If you have your adrenal gland removed, do you have to take hormones the rest of your life? - because I don't want to then. I still want my ovary and uterus back. Does anybody know?
IP: Logged |
tailz
Unregistered
posted
I just checked - rifampin should be covered but I have a 90 day quantity limitation, and he only gave me the low dose of it - 100mg - he told me he wants to get me up to 300mg eventually.
Is 90 days going to be enough? If I do 90 days and in 6 months I relapse, can I get another 90 day supply? How does that work? Is it 90 days a year? A lifetime? How can they limit quantities of antibiotic like that?
IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tailz,
Again, I am NOT a doctor, but since I went through so much testing (over a years worth) for pheo's, I will tell you what I do know.
MOST of these tumors seem to end up in your adrenals. This is a gland located on the top of both of your kidneys. That isn't to say that it couldn't show up elsewhere, but that is the most common by far.
This will sound crazy, but even after looking at what it would involve, after I got sicker and sicker, I WANTED them to find a darn tumor so I could atleast get it out of my body and have a fighting chance.
In reality, I'd probably be better by now if that had been the case and I wouldn't still be dragging around the way that Lyme has left me.
I know that a symptom that tends to shout Pheo is a spiking blood pressure to the point that you will keep passing out. I know it happened to me over and over and they said that was very indicative of a pheo which is why they kept searching.
But since those days, I've learned that Lyme really screws up our adrenals as well as many other organs and even with something like this, we can get false positives.
I can understand your feeling of wanting to get it ruled out if you think you have the symptoms, although it really is rare...if you are one that has it, you don't want to mess around.
Still though, please don't panic since as sick as this sounds, it's more treatable than this Lyme appears to be.
Keep us posted and good luck with your Rifampin.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
tailz
Unregistered
posted
I know I shouldn't be worrying, but I do anyway. I worry too because I know surgery several years ago to remove my uterus and left ovary was enough to send me into Lyme havoc, only I didn't know I had Lyme yet.
What if I need surgery, and then I have a doctor who doesn't believe in chronic Lyme (or whatever infections I have) and refuses me antibiotics?
I guess I should slow down my thought process here, but I can feel my adrenals some days, and they don't seem to listen. I'm collecting my 24 hour urine today though, so I'll know soon enough. I won't be able to drop it off though until Monday.
IP: Logged |
posted
I don't know if this helps or not but I'll let you know my experience in this area. When I first became sick Cushing's and a pheo were high on the list of possiblities.
I was tested repeatedly, scanned, and retested. Every symptom seemed to fit but eventually after repeated tests they ruled out Cushing's and pheos and couldn't give me any explanation for the odd hormones/adrenal test results.
I totally agree with the other person who said at some point you want them to say, "yes, it is a pheo" so at least you have an answer.
I hope that you do not have a pheo and wish you all the best in your testing and in your healing.
Posts: 237 | From WV | Registered: Mar 2007
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tailz,
I certainly understand your anxiety on this issue. I know with Lyme, our anxiety is through the roof and all of my pheo testing time was before I even had the lyme diagnosis. They were still just trying to find out what was cauging my body to have these crazy things going on.
So yes, I know how high my anxiety was going through all this 24 hour urine testing, but even if that comes back positive, as mine did, remember, there are still other tests the will be running and even with every test positive, as mine was, they STILL couldn't find any darn pheo no matter how much they scaned.
This is not to say whether you do or don't have a pheo. Just saying that I know anxiety is normal for us, but they would have to actually locate it before any surgery would take place and IF IF IF it truly is a pheo, the good part is that a huge portion of your symptoms will end with it. Seems like a much faster fix than what all of us are going through.
But sadly, our lyme tends to screw up our hormones which as Motownlyme said, we get crazy results coming from many of these kinds of tests. For me, I wish it HAD been a pheo instead of lyme, but atleast with lyme treatment, I've been able to reverse so many of the symptoms that I did have that they thought were reason to feel I DID have a pheo.
Please keep us posted on how this works out for you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
tailz
Unregistered
posted
I collected my 24 hour urine on Friday, and I'll drop the specimen off on Monday. I'll also get a blood level of plasma metanephrine on Monday.
I'm not really sure what I want though. I just want some measure of health back.
I want to be able to go to the store and buy food, not just canned peas and grapeseed oil, though I've graduated to frozen peas to avoid the aluminum.
I want to be able to shower, get behind the wheel of my car and not start sweating and clenching my teeth.
I want to be able to visit my daughter without having to prepare myself for the stress of the drive days in advance.
Can they ultrasound my abdomen to look for pheos? They would have to sedate me to do an MRI or a CAT scan because I can't stand the feel of metals being sucked out of me.
IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tailz,
I doubt they will be doing any CAT or MRI's of your abdomen or anywhere until they have something very positive in your blood and urine work. I know they ran me through so many darn tests to make sure the positive before was positive in the next test before doing that.
I was never sedated, but I was so sick I couldn't see straight, so I really don't remember much. I do remember an IV on several of the scans since they were using various contrasts and one time I had an injection and had to go home and come back 24 hours later, so they really were looking hard at that point.
As far as wanting your life back....I think most of us can relate. Since they never did locate a pheo in me, I can't say for sure what the difference would be in my life from if they could have removed it and now.
It's been a rough long road and we all want to find something that can change our life around. If you DO have a pheo, I hope they are able to locate it. If not, I hope someone can suggest another way to help you through these rough times.
Have you treated for co-infections?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic