Carcinoid or Pheochromocytoma? It went Bad to WORSE!

[seand777]

Wow,

I have no idea where to start. My blood pressure will spike very high all of a sudden. Even while being on 3 different BP meds. I am now getting Severe Migraine like headaches almost every day! Profuse sweating even in the coolest temperatures. From my head to my toes, my clothes get soaked with cold clammy sweat. On tp of it, the flushing is so bad, it literally feels like my head and upper body is directly under a heat lamp with a sunburn.

I also get very anxious and have pitted peripheral edema in my legs and feet. But over the past 6 months, the upper right quadrant pain occurs quite often. I'm not sure how much more of this I can take! The CPAP I use for mild sleep apnea doesn't do anything and I wake up feeling exhausted.

I could be totally calm and super relaxed and all of a sudden, it feels like acid is going through my veins like a overdose of Niacin or that special contrast they use during a CT scan. Sometimes it last for an hour, sometimes for 5 hours. Then it happens again later on whenever it wants to.

The new Doctor I saw says it sounds identical to a Pheochromocytoma, which I agree. Even though in the past, I did have a thin slice CT adrenal scan that showed NOTHING wrong. But then again, they did not use any special contrast for this one or a MIBG which is used to locate Pheos located in the Adrenal Medulla. So he did order a new
Catecholamine 24 HR urine collection and I am still waiting for the results. The Doc said if this comes back normal, he is sending me to the Mayo Clinic because he feels that there is definitely something going on causing all of these problems. Ordinary tests have not detected anything and said it will require special imaging and tests done by a panel of professional endocrinologists who have seen the rarest problems that are only common at Mayo and never picked up by most Doctors.

I sure hope this goes quickly, because all of the illness and feeling so HORRIBLE every day is casuing me to be depressed Big Time because how I feel physically.

Anyone else out here had similar symptoms with a diagnosis of some sort? OR if any Doctors or specialists have come across a similar situation, please give me your feedback on this. I would certainly appreciate it!

Thanks a million,

Sean


This discussion is related to Are these all symptoms of carcinoid syndrome/.

[rharha]

My name is Rhonda. I have been going through some of the same problems as you. i was just told that i may have pheochromocytoma and tests are being done right now.  I started off to where i could not seep for over a month and the doctor thought stress...need a vacation. now along with no sleep  i get very light headed heart races and i pass out. when i wake up i am wet with sweat and i shake bad and get sick to my stomach. i cant drive right now or walk through a store with out passing out.  just wanted to let u know your not alone... if u do go to the mayo clinic please drop a line to let me know what they found out and if u  are o.k    

[Hannahmoo]

Hello Sean...did you ever find the cause of your problem? Carcinoid or phrochromocytoma? I have all of your symptoms plus joint pains now and I have had every test known to man with only an elevated serotonin and a unusual dilated loop of small intestine! I am going absolutely mad over this...everyone keeps saying I'm fine...I know myself and I'm not! Can you lease get back in touch on this thread again and let us know how you made out? Thanks so much.....

[carcinoidwarrior]

Sounds like that loop in small intestine is a carcinoid tumor.
you need an octreoscan and a carcinoid specialist.

Go to www.carcinoid.org     Everyone here go there.

i have carcinoid   25 years to get a diagnosis.  hannah you will need surgery with experienced carcinod surgeon.

go to  http://listserv.acor.org/archives/carcinoid.html
for online support group.    Lots of experienced carcinoid patients there
can help you all on this forum - even guide pheochromocytomas to help.

[pduffy]

Hello Sean,

    I have had the same symptoms for years and all the doctors I have seen were incompetent with adrenal disease. You most likely do not have carcinoid, but it's possible that you have a mis-behaving adrenal gland and NO TUMOR. Most endocrinologists do not recognize adrenal disease if no tumor is detected on an MRI, no matter how high your hormone levels are! They will treat hyperthyroidism without a tumor, but not hyperadrenalism. So unless you have a pheo, (get an MIBG, not Octreotide), you will be out of luck getting treated. I am heading to the Mayo clinic myself, so if you have not already done this, go there and forget about your local endo as 99.9% are incompetent. I had an infection that triggered my hyperadrenalism. The only way to control the symptoms for me is to do MASSIVE WEIGHT LIFTING to litterally burn off the excess adrenal hormones. Unless I do 1 hour a EXTREME weight lifting 1 hour before bed, the excess adrenal hormones keep me awake. I must do this every day and I take large doses of beta-blockers to limit the effects of the excess catecholomines. Other fake doctors have diagnosed me with 'Anxiety', which is a wrong diagnosis as my catecholomine levels are 5X normal (consistently), and they spike with temperature changes and merely moveing from one room to another. If you have adrenal disease and there is no detectable tumor, you will have a very difficult time getting treated so you must go to Mayo or some University reseach hospital. Locally praticing physicians are more interested in making money doing tests. I hope you find help.

Regards,
Patrick Duffy