Anyone know anything about pheochromocytomas?

[NMETZ77]

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???

[michell221]

Have you been checked for carcinoid syndrome as well?  Ask for a plasma free metanephrine blood test to check for pheochromocytoma.  It is the most accurate.  There is a support board for pheochromocytoma you can google it to find out more info.

[Heiferly]

You may want to check out the dysautonomia community.  There is a good deal of information in our health pages on various dysautonomia diagnoses such as POTS, hyperadrenergic POTS, and orthostatic hypotension that may present similar to pheochromocytomas.  

http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

[evo123]

There are several conditions that have similar symptoms as Pheo's.  Below is a list of some of them:


Thyrotoxicosis
Primary hypogoadism (menopausal syndrome)
Pancreatic tumors (e.g., insulinoma)
Medullary thyroid carcinoma
"Hyperadrenergic" spells
Cardiovascular
Labile essential hypertension
Angina and cardiovascular deconditioning
Pulmonary edema
Dilated cardiomyopathy
Syncope
Orthostatic hypotension
Paroxysmal cardiac arrhythmia
Renovascular disease
Psychologic
Anxiety and panic attacks
Somatization disorder
Hyperventilation
Factitious (e.g., drugs, valsalva)
Pharmacologic
Withdrawal of adrenergic inhibiting medications (e.g., clonidine)
Monoamine oxidase inhibitor treatment and concomitant ingestion of tyramine or decongestant
Sympathomimetic ingestion
Illegal drug ingestion (cocaine, phencyclidine, LSD)
Acrodynia (mercury poisoning)
Gold myokymia syndrome
Vancomycin ("red man syndrome")
Neurologic
Postural orthostatic tachycardia syndrome (POTS)
Autonomic neuropathy
Migraine Headache
Diencephalic epilepsy (autonomic seizures)
Cerebral infarction
Cerebrovascular insufficiency
Miscellaneous
Mast cell disease
Carcinoid syndrome
Recurrent idiopathic anaphylaxis

I have an adrenal mass and all the symptoms but my mass does not show as functioning on urine tests, so I have been given a 'suspected' diagnosis of POTS.

Do your symptoms have a pattern?  Do they become worse with postural changes, standing for a while?