pheochromocytoma

Hi-
I am a 32 y/o female who has had Tachycardia pretty much all of my life. I saw a pediatric Cardiologist at around 16 and he told me it was nothing to worry about.
My heart rate was always above 100 and could can get up to over 100 upon exretion.
In January I began passing out. I was referred to a Cardiologist and was diagnosed with a Tachycardia induced Cardiomyopathy. My EF is approx 40% now.
After many tests, and many meds I was referred to my Endocrinologist. He has ran many tests. Which has led him to believe I have a Pheochromocytoma.
I have had
- A 24hr urine = Increased Catecholemine levels
- A Clonidine Suppression Test = My levels only suppressed 10% after 3 hours
- A CT scan of my Adrenals = showed no mass

I am scheduled for an MIBG Scan next wk, in which he told me it is possible it will not show up on there.
My symptoms seem to be getting worse. I have had several spike in BP while on Coreg and my Heart rate is around 100 but during an episode has gotten to 150. When this happens I sweat profusely and get really weak.
My question is, are there differential diagnosises that could create these results?
I am so worn down from all of this and just wonder what happens if the tumor is not seen on the MIBG scan???

[bear_mia]

I am very new here.  I have POTS syndrome.  I too have tachycardia and passing out.  I did have a 24 hr. urine test that came back normal so not sure what you might have.  It is just a thought about the pots syndrome (which really isn't a disease-just a multitude of symptoms.  Good luck.  Anne

[rumpled]

Adrenal scans are not accurate. I hope your doc goes by the other tests.

I had my adrenals scanned the day before my adrenal removal (cushing's disease) and the CT report said NORMAL. In reality, they were 2-3x normal size and one was nodular. Then I was still having pain, so I went to an imaging place and a month later, I had anther CT scan and the adrenals were UNREMARKABLE as were my kidneys and liver. Go figure.  

This has happened to many of my Cushing's buddies, not only in the US, but other countries. We find it sad, but oddly funny. If you search, you will find medical studies about how inaccurate adrenal scanning is.

[evo123]

I to have all the symptoms for a Pheochromocytoma and I have a mass on my adrenal gland but my 24hr urine tests were normal.  I am now suspected as having POTS.  These two conditions have similar symptoms.  

I am also sure (although I may be wrong) that POTS can cause raised Catecholemine levels.  It would be worth while requesting a tilt table test to look for this form of dysautonomia.  This would primarily monitor reactions of your heartrate and bp on going from a laying position to standing.  POTS patients have an increased heart rate of 30bpm or greater than 120bpm on standing.  Mostly they experience a significant drop in bp but some can experience a raise instead (as I do).

Post your question in the Dysautonomia (Autonomic Dysfunction) forum as there are many individuals experienced in this condition who will gladly advise you.

[Tuesdayforever]

I'm suspected of pheo too I've read sometimes on scans that they have you come in three days in a row pheos can be anywhere not just the glands a biopsy and general surgery is something but the specialist who handles this is not an endo but a nephrology specialist. Hard to find because the cells of the tumor are made from adrenal cells they can also hide along your spine I'm seeing the nephrologist Feb 6 CT does show non define kidney adnexal pole cyst radiologist asked for a more clear characterization as well as a complex cyst appearing to come from right ovary the word appearing means could be or might not be on ovary. Imaging can't compete with exploratory surgery such as my pregnancy with 15 large fibroid uterine tumors thankfully my doc planned for c section as smack in the middle of surgery the largest one never appearing on the 12 sonograms at all was hidden by baby was a grapefruit and blocking the os which is babys exit :( laboring could have abrupted us harming both if not killing as I had placenta previa. What's leading them to pheo for me is low am Cortisol 24 hour urine total volume high catecholamine normal epi and norepi total high meta and whatever else very high , I'm on bp meds sweat profusely meds don't control bp headache muscle pain frequent urination everything on the list but weight loss ? But we're not books my dads.cancer when found stage three mantle cell lymphoma should have been in his bones and he should have been loosing weight and neither happened thankfully . Another consideration having nothing to do with food is central diabetes insipidous also a dedicated pituitary study might show a micro or macro tiny tiny tumor or empty Sella syndrome and pituitary hormone labs I hope I don't have a pheo but I've been in ambulances with bp episodes on meds that ran 296/140 which would not respond to nitro or tranquilizers with them attempting over 24 hours to drop it , good news is heart is capable of going much higher scary bad news this and these so called rare pheo and Cushing are being found in droves post mortem :/ whoever invented that zebra horse hooves line I'd like to strangle medicine is a baby what 100 years old for Christs sake 100 years ago the number one cause of death for Mom after birthing was they didn't wash their hands between patients !!!!! I hope you're going to get an answer and support and guess I'll find out what the hell I've been surviving for 14 years with symptoms...... Or not lol

[Tuesdayforever]

If you'd like to visit or need a listener please email me anytime ************@Yahoo I also have too many other health anomalies to list including a spine that's more commonly seen in a male senior , fibro and I'm female age 34 sweating all my life the bp and others grabbed me age 20 it's all about support and not feeling alone out there !

[rumpled]

I am having a hard time reading your post as your sentences are kinda running together and my brain is a bit fuddled from the cold...

So, you have high BP, an adrenal lesion and tests that indicate pheo - but your docs are not acting? I don't know personally if kidney docs treat this - but a neuro-endo - a pituitary doctor - would - as they have extra endocrine training. Plus they know surgeons that do adrenal surgery as they have to send other patients for other types such as for Cushing's (that was my surgery).

I think if you take copies of your tests and shop around at a pituitary center - try larger hospitals and university centers (some are in the links in the health pages in the brain/pituitary forum run by patients - I am the CL there too) you may get the help you need and stop suffering.