Pheochromocytoma Support Board

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...

Please help....How serious can SDHB be if it is not monitored???

feeds@yuku.com (BaileysMummy) — Wed, 04 Nov 2009 01:26:18 GMT

Hi All,

I just found this forum and it looks like a great place to come for support
I will tell you my current dilemma and would be interested to hear some of your thoughts if you have the time.

I recently received a letter from the health department telling me that SDHB mutations have been found in my 2 year old sons Fathers family so I have undergone genetic testing and am waiting for the result which...

Dr. Inderbir Gill

feeds@yuku.com (tues1day) — Sat, 31 Oct 2009 19:06:32 GMT

Noted urologist Dr. Inderbir Gill leaving Cleveland Clinic for USC
February 18, 2009 by Chris Seper

CLEVELAND, Ohio - Cleveland Clinic urologist Dr. Inderbir Gill will leave this month to become chairman of the Department of Urology in the Keck School of Medicine at the University of Southern California.

Gill's final day at the Clinic is Feb. 28. When he arrives at USC, he also will be director of its new Institute of Urology and serve as an...

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...

Surgeon

feeds@yuku.com (jennyline) — Fri, 30 Oct 2009 14:08:04 GMT

Hi-
We just found out our 15 year old son has two tumors near his renal artery. He is at the Univeristy of Michigan hospital. They want to discuss surgery for removal. From everything I have read, this is a very dangerous surgery. Could anyone recommend a surgeon that has a lot of experience with adrenal tumor removal? I will travel anywhere to get the best care. Please send your suggestions. I am having a very hard time processing this and any help would be so appreciated.
...

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)....

Returning to NIH

feeds@yuku.com (iamflasunshine) — Thu, 22 Oct 2009 17:46:15 GMT

Hi All,
It has been 6 mo since Amber's MIBG 131 Treatment at UPENN. I spoke with Dr Pryam a few days ago and he wants to wait and see the scan/test/labs from NIH before he decides what Amber should have done next. He also said that because the MIBG treatment at UPENN is a clinical study that they may not be able to treat Amber because of her age.

We will be going back to NIH the 19/20th of Nov. I know that Dr Pacak and Karen will find a place for her to get another MIBG...

I need some guidance please!!

feeds@yuku.com (annel) — Thu, 22 Oct 2009 06:03:52 GMT

My son is 21yrs old ( Daniel). When he was 11 he had a adrenalectomy for a pheochromocytoma. (My brother passed away 24 years ago from metastatic pheochromocytoma.) Daniel was followed up with an oncologist who after 5 years told him he was non-symptomatic and did not need to see her anymore. This past Jan. he had stomach issues and ended up in the ER. They ordered a CT of his abdomen & pelvis and found a lesion on his T10 vert. and a small lesion in his lower lt lung. Biopsy of the...

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

I told the doctor I had a pheochromocytoma! He didn't believe me!

feeds@yuku.com (sam1174) — Mon, 19 Oct 2009 15:22:13 GMT

Well, the endocrinologist confirmed today that I have a pheochromoctoma. My primary care doc kept treating me for panic/anxiety attacks, and I kept telling him I'm not anxious! I googled my symptoms and the results said I had a lot of the symptoms of PC. I asked my doc about it, and he kind of laughed me off. Then he made some comment about too many people using Wikipedia to diagnose themselves. Finally, after another visit, he agreed to do the 24 hour urine test. I didn't have a...

Steve and Kim's Website

feeds@yuku.com (CarolRae) — Sun, 18 Oct 2009 13:07:00 GMT

Hi Everyone, If you have been following Steve from Wisconsin's story and would like to help brighten their spirits, please go to caringbridge.org and type in stevesargent. There is a section where you can go into his guestbook and give him your support with a note. Also, look at the pictures, and you will see some photos of our family. I think it is nice when you can put a face to the names you are reading about. I continue to uplift ALL of you. Right now I am especially remembering...

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...

To Yvonne

feeds@yuku.com (CarolRae) — Mon, 12 Oct 2009 09:15:14 GMT

Hi Vonnie, Thanks for writing me. I couldn't figure out how to write you back so I'm hoping you get this. We had bad news about Steve last week, as his paras have moved into the bone. He started chemo (CVD) on the spot and had a treatment Wednesday and Thursday. He goes back in three weeks. Now we are working on raising the money for him to go to Switzerland for Y90. Several of Kim and Steve's friends and some of our friends have offered to do fundraisers for him. There will be a...

Negative biochemical results but all pheo symptoms positive MIBG

feeds@yuku.com (Charlotte) — Sun, 11 Oct 2009 22:30:31 GMT

Hi to all of you and the wealth of information you have on pheos. I would like to be in touch with anyone who can relate to the quandry that I, and my specialists, are in; negative urine results, equivocal MIBG( ie showing one adrenal gland much brighter than the other), negative CT scan for adrenal neoplasm, 3x epinephrine plasma level, and all symptoms of pheo; most of which are under control with 2 BP meds, 1 migraine/headache med. I also have been taking for many years, lamictan and...

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.