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Deana
08-10-2005, 02:45 AM
I have just started "my journey" with the rheumy. He was very hesitant to mention the word "lupus"....especially since my ANA was negative. My resting heart rate was 115 while I was in his office and I had a temp of 100.0. My BP was 147/91 that day, but it is very erratic, going from 180/110 to 112/64. I told him of all my other symptoms...hairloss, EXTREME FATIGUE, blisters in my nose/mouth, chronic daily - sometimes severe headaches, swelling of feet, numbness in hands and feet....etc...and he is starting with pheochromocytoma. He said it was like looking for a needle in a haystack. ANd that there was something definitely wrong from my labwork...somekind of inflammatory process, but he had NO idea what it could be. At least he listened and is trying SOMETHING. I was just wondering....has anyone else been looked at for a pheochromocytoma before being diagnosed with lupus???
Thanks guys,

Saysusie
08-16-2005, 09:52 AM
Hi Deana:
I have not, nor do I know of anyone, who was diagnosed with pheochromocytomas during their testing for Lupus. But, in researching it for you, I found that it is not uncommon for patients with SLE to also present with symptoms of pheochromocytoms.
Pheochromocytomas are tumors of the adrenal gland which produce excess adrenaline. Pheochromocytomas arise from the central portion of the adrenal gland which is called the adrenal medulla. The adrenal medulla is responsible for the normal production of adrenaline which our body requires to help maintain blood pressure and to help cope with stressful situations. A tumor which arises from the adrenal medulla and overproduces adrenaline can be a deadly tumor because of the severe elevation in blood pressure it causes.
The following symptoms are listed from the most common to the least common:
Headaches (severe)
Excess sweating (generalized)
Racing heart (tachycardia and palpitations)
Anxiety / nervousness (feelings of impending death)
Nervous shaking (tremors)
Pain in the lower chest or upper abdomen
Nausea (with or without nausea)
Weight loss
Heat intolerance

Making the diagnosis is usually straightforward by performing the following tests:
24 hour urinary catacholamines and metanephrines. This study is designed to measure production of the different types of adrenaline compounds that the adrenal makes. Since the body gets rid of these hormones in the urine, we simply collect a patient's urine for 24 hours and determine if they are over-produced. This test measures different types of adrenaline (epinephrine, norepinephrine, dopamine) as well as the break-down products of these compounds which the liver and kidney have degraded. Since these compounds are concentrated in the urine, this test is very good at making the diagnosis of pheochromocytoma.

Serum catacholamines. This study measures adrenaline compounds in the blood. It is not as sensitive a test for pheochromocytoma as the 24 hour urine test (sometimes the urine test will be positive and the blood test will be negative), but it still can give important information if it shows elevated adrenaline levels.

There are 4 primary x-ray tests to examine the adrenal glands (and the rest of the abdomen) for the presence of a pheo. Some are better than others and are therefore used routinely, while one or two are used infrequently yet can yield important information when positive. To be more complete, this information was moved to a new page which examines x-ray tests for all adrenal tumors.

Surgical Treatment of Pheochromocytomas
All pheochromocytomas should be removed surgically. The vast majority of patients can be treated with the new technique of minimally invasive Laparoscopic Adrenalectomy. This is now the preferred method for removing pheochromocytomas and is available in most hospitals in the U.S.
Let us know how your tests go and what the results are. I hope that I have been helpful to you :lol:
Peace and Blessings
Saysusie

Deana
08-16-2005, 08:11 PM
Saysusie,
Thank you SO much for your post. It WAS very informative. I am still waiting for my test results. I have an appointment in a couple of weeks to go over all of them. They have not called, so I guess I am not dying...I just feel like it...:) I do have all of the symptoms mentioned of the pheochromocytoma...along with many others. EXCEPT for the losing weight part. I am, unfortunatly, one of those people who eat when they are stressed or not feeling well...which is most of the time...:) I have gained weight...and seems like I cannot lose it...even if I cut down or eat better....I admit....I have not made a concentrated effort to lose weight...but I had a couple of days that I ate VERY little....just was not hungry...and didn't lose an ounce. I have had a lot of swelling lately and have wondered if some of it is water....but you know we all hope that it is water....LOLOL

Once again...thanks for everything. It was really nice to have someone reply to my post!!! I feel like no one listens to anything I have to say anyway....I know my docs, friends and family are tired of hearing it...so thanks again...:)

Deana

Saysusie
08-19-2005, 02:07 PM
Hi Deana;
I have the opposite problem when dealing with stress. I seem to shut down completely; I don't eat at all, I sleep constantly, I don't talk nor do I go outdoors much. I go into an almost emotional hybernation. Not eating is just as harmful to ones body as overeating. My body holds onto fat because it always thinks it is starving, so I do not lose weight either :?
You need never worry about no one listening to you here, that is why this forum was set up so that lupies, like you and I, will have a place to find answers, comfort, understanding and a place to vent and/or share their emotions.
Remember, you are not alone and we are here for you!

Peace and Blessings
Saysusie