Welcome to Pheo Support

catecholamines rise with standing, anyone?

feeds@yuku.com (sue1214) — Fri, 06 Nov 2009 14:16:41 GMT

Just doing my usual questioning. Sitting, my b/p was 125/77. I was doing a standing b/p today, and about 3 minutes into it, my b/p shot up to 141/100. I was supposed to stay for another 5 minutes, but I felt awful, with palpitations and shaking. It took about 3 hours to kind of get back to normal. Anyone else ever have their standing catecholamines done, and were they much higher? I had a doctor that asked for standing cats., but the lab messed them up. Today would have I could have...

Dallas Pheo Doctor Referral

feeds@yuku.com (le25) — Sat, 31 Oct 2009 13:09:25 GMT

I have long been suspected of having a Pheo, but the 1st MIBG-131 said there was no pheo to be found??. Fast Forward one year and now I am in a slow bone marrow failure situation where all my counts are depleted. My platelets have stopped working so i have severe bleeding episodes that seem to coincide with my related "pheo symptoms. I now have positive plasma metanephrine tests that are moderately elevated and localization on right adrenal by both MIBG-121 and Spect CT but my doctors...

Anyone out there living in South Africa?

feeds@yuku.com (Charlotte) — Fri, 23 Oct 2009 22:53:35 GMT

Pheos/para's are regarded as very strange entities here; even more so than in UK or the States. My journey has been a long one and i would love to be in touch with someone who is a bit closer to home, in addition to all of you great folk out there.

Need Help

feeds@yuku.com (rsutphin) — Fri, 23 Oct 2009 19:47:58 GMT

Hello,

I am at the end of my rope. I have had some very strange symptoms for 1 1/2 years now and I think it may be a Pheo. I have what I call episodes where when they happen my heart races and it feels like I am having a heart attack. I get all the symptoms of a heart attack , my heart races,my blood preasure goes up. I get really sweaty and I get the chest pains and everything. My doctors and I mean plural Doctors say that , after several test, that...

Don't poke it!

feeds@yuku.com (yetanotherprofile) — Fri, 23 Oct 2009 10:09:51 GMT

Since I still have that dull pain/pressure in my back, my new family doctor gave me a requisition for an adrenal and renal ultrasound. When making the appointment, I was informed that they don't do adrenal ultrasounds, because they can't really see the adrenals (I guess the ribs are in the way?). So they just did a kidney ultrasound (which I'm not really expecting to show anything, since my kidney function seems pretty normal and the past kidney function tests have been fine)....

Pheo Conference 2009 Summary

feeds@yuku.com (laurab) — Tue, 20 Oct 2009 12:44:16 GMT

I put a summary of the conference highlights here: http://pheochromocytomasupportboard.yuku.com/sreply/31532/t/2009-Pheochromocytoma-and-Paraganglioma-Conference.html

Please read, Caseber (my story - Greeneyedgirl)

feeds@yuku.com (greeneyedgirl) — Sat, 17 Oct 2009 23:27:11 GMT

It began in October of 2007 when I had a severe attack at work with what was assumed to be a severe panic attack. One of my co-workers checked by blood pressure. It was 170 over 120, and my heart was beating too quickly to get a count. I was trembling all over and they thought I was going to have a seizure. They took me to the E.R. and they gave me an ativan, and prescribed me buspar (for depression and anxiety). What a joke. The episode declined and I was sent home. The episodes...

Negative biochemical results but all pheo symptoms positive MIBG

feeds@yuku.com (Charlotte) — Sat, 17 Oct 2009 05:44:02 GMT

A newbie to this group! Is there anyone out there who has had a pheo removed; although inital urine results were negative. I have had a CT scan and a "well defined neoplasm" is shown in the left abdominal mesentery. I have experienced pheo symptoms for 10 months.Thyroid, menopause, diabetes, carcinoid all ruled out. High BP and headaches controlled with meds but have continuous nausea and loss of appetite. MIBG scan shows slight shadowing. I really need to be in touch with folk...

Needing your help please

feeds@yuku.com (greeneyedgirl) — Wed, 14 Oct 2009 19:52:31 GMT

I had my left adrenal gland removed in April of 2008. I am having some major issues with my heart and I have had numerous visits to the er with superventricular tach. I am on medication for that. I am very tired all the time and have all the symptoms of adrenal fatigue. Is there anyone out there that has needed to be treated with meds because their remaining gland is not up to par? Is this common? I am really struggling with this and I need some answers from the only people I know who...

High Metanephrines/Normetanephrines levels-MRI normal, no tumor...why is this?

feeds@yuku.com (Ruthie) — Sat, 10 Oct 2009 20:01:11 GMT

I am new to this board. I am 31 years old and developed high blood pressure in July...always normal BP before. One medication did not control my BP, so my doctor put me on a second. My BP does still spike at times even though I am on 2 BP meds. I have other symptoms; flushing, sweating, headaches, shaky/lightheaded/faint, chills, cold hands and feet, and extreme fatigue. I have a history of migraines. My doctor ran a randon urine test, and the metanephrines/normetanephrines were high....

BP spikes - duration of...

feeds@yuku.com (evie) — Sat, 10 Oct 2009 04:19:44 GMT

When a bp spikes what durations can the spike last for? Can they differ from minutes to hours to days? My highest bp has been 204/154. This was this week in AED and only lasted a short while then went back down to the higher end of normal. But my bp can range from approx 98/45 to very high. I am not on any bp meds at the moment and my bp also increases on standing. I have just ben given propranolol to lower my hr when it fluctuates.

confused and need help

feeds@yuku.com (jlscappy) — Fri, 09 Oct 2009 07:14:25 GMT

My doctor strongly suspects a pheochromocytoma. I have been through all of the standard blood tests,24 hour urine tests, cat scans, and mibg123 scan. My doctor wants to wait and do one more cat scan before he runs any more tests or biopsies. The mibg123 showed elevated actvity. He feels that once we do this next cat scan we will either needle biposy it or remove it. My concern is that since pheos are so rare there will be no doctors in my area with experience. I have mentioned this to my...

Update on Steve from Wisconsin

feeds@yuku.com (CarolRae) — Thu, 08 Oct 2009 17:37:36 GMT

Hi Everyone, I just want to let you know that our family has had "quite a week." Yesterday Steve, Kim, and I spent the entire day at the University of Iowa Hospital. Steve had a PET scan, and the news was not good. The pheos (paras) have moved into the bone in his rib and hip areas. As a result of these reports, he immediately had chemo (4 hours of CVD). He went back today for more. He will be going to Basel, Switzerland, as soon as possible (2-3 months). There he will be treated...

Update CAT scan results

feeds@yuku.com (tj) — Mon, 05 Oct 2009 17:52:00 GMT

I had a CAT scan last week and visit to endo today. We are going to try to adjust thyroid meds as last blood work showed it needed adjustment.

I sincerely appreciate any interpretation or input on the following CAT report.
thanks

FINDINGS

Redemonstated is a left adrenal gland mass which measures 3.1 x 2.6 cm not significantly changed when compared to the...

looking for answers--big family!!

feeds@yuku.com (annel) — Mon, 05 Oct 2009 15:12:39 GMT

My 21 yr old son had a extra-adrenal pheo removed when he was 11yrs old and was followed by an oncologist for 6 years. After that they said it was a benign tumor and he was "cured"--even though my brother passed away at age 32 from a metastatic pheochromocytoma in 1985!! This past January he had an episode of bloody stool and sent to the ER. They performed a CT scan and found a lesion on T10 and lower lt lung. We are currently being treated at Sloan Kettering in Manhattan (about a...

HBP of 180/120 for the loose...

feeds@yuku.com (mousekitty) — Sun, 04 Oct 2009 18:17:36 GMT

Hello everyone! (^.^)/

I am a 27 year old female in Oklahoma. I have been of poor health most of my life. It started when I was born with a retroperitoneal teratoma tumor, which was removed when I was about 2 months old. The tumor was discovered because it was sitting on top of my left kidney, effectively squishing my adrenal gland and kidney. The tumor was successfully removed over 27 years ago, and my family was told that I shouldn't ever have any complications (except for...

Menstrual Cycles

feeds@yuku.com (Rosecp) — Tue, 29 Sep 2009 13:22:07 GMT

My aoplogies in advance to all the guys out there, but, I am wondering how pheo may or may not impact a woman's menstrual cycle? I am 40, and just got back results from bloodwork that would indicate that I am post-menopausal (LH 109.1 - ref 0.0-76.; FSH 41.6 - ref 1.4-18.1). Can pheo "mess" with female hormones? I have conflicting plasma free fractionated blood test results (one super high, one low) and am awaiting the results of a 24-hour urine test from mayo (three weeks...

dehydration and test results

feeds@yuku.com (yorke) — Mon, 28 Sep 2009 15:51:47 GMT

Hi everyone! I'm new to the board and very thankful to see all this wonderful information as well as the community feel on this site.

I've been having symptoms of hyperthyroid for about 2 years now, including fluctuating tachycardia that has brought my resting pulse up to nearly 200bpm at times. Since my mom has Graves disease and three of her siblings have thyroid disorders we felt pretty sure that it had something to do with the onset of thyroid disease but everything...

New with Puzzling Results, Help Appreciated

feeds@yuku.com (travelgrl) — Sun, 27 Sep 2009 22:31:39 GMT

Hello,
I came across these boards by researching anything I could regarding the adrenal gland.
Approximately 2 years ago, I started having symptoms of fatigue, high bp, fast pulse and light headedness. I would get hot very easy and sweat. It was sporatic at work and would often leave me feeling ill for some time. I attributed it to stress. As time passed the fatigue worsened and I seemed to be working really hard to keep up my normal usual routines. I was also having weak spells and...

Adrenal tumour that's just a tumour?

feeds@yuku.com (yetanotherprofile) — Sat, 26 Sep 2009 13:35:30 GMT

I'm trying to find my own answers, but the adrenal glands seem to be a bit of a mystery; there just isn't as much information as I'd like!

I know that you can get pheochromocytomas in your adrenal medulla, or adrenal adenomas in your adrenal cortex. Both types of tumours secrete hormones. But is it possible to have an adrenal tumour that's just a tumour? Something that just causes pain and/or pressure and milder symptoms (simply because there's something...