Welcome to Pheo Support

How many pills/tablets/medicines do you take daily?

feeds@yuku.com (Glenn 50) — Thu, 17 Dec 2009 02:46:17 GMT

I guess you could say that this is a semi light hearted query as the amount of medications and supplements taken daily doesnt always have any connection with the severity of our mutual problems and I am always saying to DW Jan that there are plenty of folks that take far more tablets than me...it's just that I haven't met any of them yet....I know they are out there...
It is just an innocent inquiry I'm not trying to pry.
My wife sorts them out nightly (hospitals...

Bone Metastasis symptoms?

feeds@yuku.com (gtghawaii) — Mon, 14 Dec 2009 17:32:01 GMT

I've been lurking around this board for awhile and occasionally post. I want to thank those that maintain this site because you provide such a great service. This disease is so rare that I often how anyone gathered information before the internet.

This has been a crazy year. I've had two operations and a six week course of radiation. Just a...

Lying and Standing fractionated catecholamines

feeds@yuku.com (le25) — Mon, 14 Dec 2009 16:50:11 GMT

I hope this ends up in the right spot...question on the plasma metanephrine test that involves lying down for 30 min then 1st blood draw is taken at 5min and then a 2nd one is taken at the 10minute interval. Is the test abnormal if your total Plasma metanephrines goes up two or three fold or how is this truly measured?
I have had these tests before with two/three fold increase and then the MIBG showing borderline abnormal uptake on right adrenal.but we continue to test??

Here...

nih????

feeds@yuku.com (annel) — Sat, 12 Dec 2009 06:04:47 GMT

Can anyone tell me how to get in touch with Dr. Pacak at nih? Over the past 2 weeks I have emailed him twice and left a voicemail and have not heard anything!! I hate this waiting process! I now have 3 of 6 sons that are positive and need a doctor who knows about the sdhb mutation.

Anne

Maybe I should stop trying

feeds@yuku.com (KristinaLynn) — Sat, 12 Dec 2009 00:26:44 GMT

Ugg... I just can't seem to go anywhere or do anything without ending up at the hospital. I felt horrible. Had a massive headache, nausea, diarrhea my bp wasn't too high like 165/114, but high enough that I felt my head would explode. I started having trouble breathing and talking at the same time so I went to the ER.... my heart rate was high 120-130, but I was in pain and stressed.. understandable. I went in a room they hooked me up to all the gadgets and left. I began to feel...

MIBG showing uptake on right adrenal, but left adrenal enlarged?

feeds@yuku.com (le25) — Fri, 11 Dec 2009 12:25:40 GMT

Question for the board members...have a "borderline" abnormal I-123 scan result specific to my right adrenal. Just had an MRI of my adrenals and what is showing is that
my LEFT adrenal is actually looks enlarged. Can anyone comment on these findings? Could this be something is going on in my right adrenal such as an infection./cortisol..etc that is causing my left to be overworked. My BP continues to be quite high.

Genetics testing results

feeds@yuku.com (Darla) — Fri, 11 Dec 2009 10:31:09 GMT

Awhile back I found out that the gene that causes Pheo's in our family is the SBHB gene. About a month ago,I had all 3 of my kids tested. We got the results several days ago and all 3 of my children have the gene! I am just astounded, I don't get it. Can that gene be that dominant that it affects ALL my children? I can understand one child, maybe two but all three? It's just horrible to me, I am emotionally exhausted. My...

pregnant and no adrenal glands

feeds@yuku.com (latifah23) — Thu, 10 Dec 2009 17:28:24 GMT

im safe and sound in uk, thanks to ALL your wonderful support that put my mind at rest. now im going to my endocrinologist 2morrow, really looking forward to it,

i have a another random question,

can someone without adrenal glands have children?????
pls would like any of your views

!!$

please advise; one positive and one negative plasma met test

feeds@yuku.com (Charlotte) — Tue, 08 Dec 2009 03:34:04 GMT

I have just recieved the results of my plasma met tests. they are:
1st sample (taken fasting, supine for 30 mins with indwelling catheter)
total plasma metanephrine(free and bound) 4.18nmol/L, reference <3.0nmol/L
total plasma normetanephrine(free + bound) 0.4nmol/L, normal

2nd sample, 2 weeks later
total plasma metanephrine 1.2nmol/L, normal
total plasma normetanephrine 0.3nmol/L, normal

My urine mets were normal except for one at upper end...

Symptoms of 7 tumors in 15 year old

feeds@yuku.com (anirox) — Mon, 07 Dec 2009 09:53:00 GMT

Hi there. My 15 year old has the sdhb gene. His first tumor was at age 9. last summer he had the tumors return in force. Metastic diagnose of 7 tumors. 3 in spine,3 in abdomen and one in chest. Now the tumors are very timy and have not grown in a year. The cathecholomines are slightly elevated. Yet we are having alot of anxiety symptoms and headaches. The headaches were so bad ove the summer I thought he was going to die. He was in so much pain and naseau all the time. All they did was give...

Info on MIBG and other Scans etc...

feeds@yuku.com (penola) — Mon, 07 Dec 2009 05:20:19 GMT

Caseber,

Your info on the scans is some of the most helpful I have read. Keep it up please. My adrenal tumor is growing, symptoms are almost unbearable at present. MIBG was negative on me 2 years ago. AVS failed as they hit the wrong vein on RH side, as mentioned previously. I was episodic 2 years ago but constant now. When I am phsically active my symptoms hit the roof. They now include severe pain, flank through to abdo over adrenal, nausea, liver testing abnormal...

Questions for the ladies...hormones

feeds@yuku.com (yetanotherprofile) — Sun, 06 Dec 2009 12:15:20 GMT

It seems to me that quite a few of the people suffering from pheos (or simply pheo-like symptoms) are women, and often young women. I've heard about a possible connection between certain birth control pills (such as Yaz) and pheochromocytoma. But I was wondering if other birth control pills might be having a similar effect.

So here's my question: If you have a confirmed pheo, pheo-like symptoms, or even some other type of adrenal mass, were you on the pill at any time...

Announcement About Member Signatures

feeds@yuku.com (MaryPeebels) — Sat, 05 Dec 2009 23:45:51 GMT

Dear Members,

For some time now, this board's administrators have been discussing how difficult it is to distinguish between members' individual case histories, and to keep track of the status of each person's current medical issues. We've noticed that some other support discussion groups have a footnote type "signature" which states some brief information concerning their medical history. We think that type of format would greatly help everyone on this...

Pheo in the liver hilium or retropertioneal cavity

feeds@yuku.com (le25) — Sat, 05 Dec 2009 16:40:54 GMT

Does anyone on here have any experience with an extra-adrenal pheo presenting close to the liver hilium or deep in the retropertional cavity.
My MIBG suggests this, but i think my doctors are going to do an exploratory surgery to try and determine this. My bone marrow is failing/
have reduced platelet function....etc; the time has come for them to go and look for the problem, since modern imaging has not been helpful in my case.
I have a pectus excavatum that causes quite a bit...

Hi new here

feeds@yuku.com (MrsJackson) — Sat, 05 Dec 2009 09:21:46 GMT

Hi I don't really know where to start, my life is such a mess right now. I guess I will start at the beginning. I am a 25yr old female with 2 children. About 8 months ago I started to experience allot of stomach issues of feeling nacious all the time and having stomach cramps almost everyday. So I finally went to a gastro doc. I told him what had been happening that I had lost 10 pounds from not being able to eat becuase of the pain and how it would wake me in the middle of the night...

im scared, i have pheo and i need to go back home to uk on a plane??????? help me

feeds@yuku.com (latifah23) — Sat, 05 Dec 2009 08:43:37 GMT

Hi need any advice, i have pheo but need treatment from Uk, my chest and abdomen pain is getting worse and worse, my flights not till thursday, will the flight make the tumor worse, i dont know what to do? i still have 6 days till the flight and im scared that the tumor is going to get bigger and the flight will make it bigger because of the air pressure but sweden cannot help me, so i need to go back home to UK.

Sometimes we forget...and other things.

feeds@yuku.com (Glenn 50) — Sat, 05 Dec 2009 04:56:20 GMT

Sometimes we forget about letting our net families know what is going on with our lives when we have no further queries or concerns about what the net family is concerned mainly with...in this instant Pheos and all the life changing situations we may or not be faced with.
When I had Pheo#1 removed in 1981 after years of migraines, sweats, palpitations and hypertension I was told it was an exceptionally rare problem that had been resolved....no problem.
In 2000 I noticed my 19 yr...

Mayo or NIH (or maybe U of Iowa)

feeds@yuku.com (TM) — Thu, 03 Dec 2009 18:06:01 GMT

Hi all. My husband possibly has a pheo. He's had bloodwork that seems to indicate a pheo, but it wasn't really run "cleanly" - it was sent to Mayo's lab, but all of their instructions for specimen collection etc. were not followed. Also, he had untreated adrenal insufficiency at the time, and was having some sort of allergic reaction. So we do wonder if it could be a false positive. He has had a negative MIBG I-123, but has not had any cat scans or MRIs...

I found out today my adrenal adenoma has grown slightly

feeds@yuku.com (sue1214) — Tue, 01 Dec 2009 17:59:03 GMT

I had a CT scan a month ago and just found out that my adrenal growth is now 1 cm. Two years ago it was 0.7 cm. I don't know if that means anything yet, as I found this out from my g.i. doctor, and I have to see what my new endo thinks of this.

I would like to add something interesting that I read. I will post the link at the end. It was an article about people with pheo's response to the Valsalva maneuver. That is when you bear down like having a bowel movement. In...

I have a question about an attack

feeds@yuku.com (aautomo884) — Tue, 01 Dec 2009 15:00:27 GMT

My story is long..... So I will try to keep things really short and sweet. I began having cardiac issues and hypertension at the age of 28, I am now 41. I took atenenol for years and that seemed to work. Occasionally form 2004 to current I would have spontaneous Rapid A-fibs, SVTs and sinus tach related cardiac involvement. During this time I also developed Hyperparathyroidism and had two parathyroid adenomas removed. After a long struggle and many doctors I was diagnosed with Cyclical...