June: Page Two

Hi, my name is Junebug (June) and I generally answer the technical questions on the board. My e-mail address is jhux3238@aol.com. I too, have pheo and was a research biologist before I became too ill to work, so this stuff is right up my alley. Just call me the resident techno-nerd!

Regarding some questions to the message board, --many doctors avoid the word 'tumor' because so many people associate it with 'cancer', when it really just means 'a growth'. If you have an area of abnormal tissue, on the adrenal gland, secreting adrenaline---that generally means a pheo--although, in my research I have heard of adrenal cysts---and they are really, really rare--much more so than pheochromocytoma.

First, let me give you some down to earth real info on pheo: it is a very rare disease, with only 800 people a year diagnosed with it. It usually is a benign tumor--non-cancerous; less than 10% are malignant. Even if the tumor is malignant, it's not a particularly aggressive cancer--most cancerous pheos are encapsulated--separate from the surrounding tissues. The cancerous tumors are generally associated with disorders referred to as MEN 1, MEN 2A or 2B, which involve other parts of the endocrine system and are inherited, or familial. With the statistics now given, I'd like to point out that each individual has their own, different set of statistics--specific only to themselves, so the above statistics are merely guidelines.

The symptoms of pheo are quite specific: hypertension --either all the time or only during active attacks --(if it is high only during an attack, it can be normal, or low in between). Usually, the symptoms follow a specific pattern and are called 'paroxysms'. Other symptoms are: a severe pounding headache (a migraine--with nausea and vomiting possible), severe sweating without flushing, heart palpitations with very sudden hypertension. Other symptoms can include anxiety, tremors, chest 'tightness' or pain, blurred vision (usually with the migraine), and over time, weight loss from the increased metabolic rate (which can also cause a fever). You can also have abdominal pain, nervousness and irritability as well as fatigue and weakness.

There are several other disorders associated with pheos --orthostatic hypertension is one of them (I have it myself), Raynaud's phenomena (ditto), hyperglycemia and hypotension. That's why they call the attacks paroxysm --they are paradoxical in nature. You can have a normal, or low blood pressure--and yet an attack can drive it up to very high readings, only to have it fall once again. Other symptoms I have myself: I have muscle tremors, weakness and spasms, and take medication for them. I can run a 102 degree fever at the drop of a hat...

We won't talk about the migraines! I can tell you I have had pheo for 15 years now, and it is inoperable --the darn thing is too small to show up on the scans!

I can give you a few ideas that may help...

First, have your own blood pressure cuff at home. The automated ones are fairly inexpensive--maybe $30-$40, and trust me--worth their weight in gold. Try to take your BP on a regular schedule--every few hours during the days, and just jot time and dates down--and how you feel in general at that time, for a week or two. Don't try to make a pattern of it, just yet. I would take my BP as soon as I know I'm going to have a migraine, and would note the sequence of the symptoms that follow it--and take the BP again after the migraine clears up. You can also look for anything that seems to trigger the attacks --besides dense doctors-- a food, an allergic exposure, strong emotional stress..., alcohol, over-the-counter medications like sudafed, strong exercise? The more information you can bring in, the easier it will be for the doc--ESPECIALLY IF IT'S WRITTEN DOWN! A good doctor will ask about the written info--and is more likely to listen, too.

As you have also guessed, there are other diseases with similar symptoms--and totally different underlying disorders. And while hypertension is common in Conn's disease or hyperaldosteronism, finding epinephrine (adrenaline) is not.

There are tests than can be used to figure out what it is that you have; blood tests, looking for epinephrine, norepinephrine or dopamine; a CT scan and MRI to see the tumor, how big it is, and exactly where it is..., plus several other odd nuclear-medicine tests if needed.

I am working on a diagnostic booklet for folks to use, but alas--I'm still working on it: it's my Christmas present to the others. It will be designed to answer questions simply--in real people terms, and will include a section to print out to take to your doctor(s). Since I'm working on it in sections, we have decided to put it on our web site in sections; then assemble it into a whole. Now, how to get to our web site: Mary 3, our web mistress, puts the info on the board periodically. Actually just a few messages ago. We also hold two live 'chats': Tuesday evening at 8 EST and Sunday evening at 8 EST. All comers, welcome!

Please feel free to write me if you need some additional info, or just want to talk. and yes, there are others out here, and we have all been thru it, or are going thru it and we would welcome your presence.

Junebug