help on flushing, sweating, is it carcinoid tumour?

[C04455860]

hi,

im new to this forum.my condition is as follows, i have constant red cheeks and suffer from extreme flushing.when i flush my head comes extremely hot and i cannot control these flushes.i also suffer from excessive sweating all over my body.i have blurred vision when looking at objects from a distance.i went to the endocrinologist and they took urine and blood samples.my blood samples were ok but my urine showed a slight increasce in adrelan levels.he is taking the urine sample again as i took mdma about 8 days b4 the urine test.i have a shy , nervous personality.

my question is could the mdma interfere with the urine sample if i took it 8 days b4.he was testing for 5 HIAA and cateholanimes and metarephine ( i dont know if i spelt those two words correctly) and has anyone whos has had tumours tat cause these symptoms b4 did there blood and urine tests like mine.any replies would b appreciated.

Many thanks

John

[C04455860]

hi hannahmoo, Pheochromocytoma or pheos as their short name are small tumours located at the top of the kidneys. when the endocrinologist was testing me for pheos he  tested catecholamines and metarephine and 5HIAA.I Dont know which one of them deals with adrelain, but he said my adrelain levels were slightly elevated.he told me this may be due to a pheo tumour producing too much adrelain or the other possibility being that the drug mdma i took approx 9 days before may have intervered with my adrelain levels.im personally hoping that he tells me i do have a pheo because if he doesnt im back to square one again.he said he tested my thyroids which was a blood test and he said they were fine.In my case i think the endocrinologist was more worried about my symptoms because the all came about during adolence and this is when i could have got the pheo when my body was changing from a boy to a man.
I have a lot of symptoms and they all came about at the same time and have got worse as time went by.These were flushing, sweating, redness in eyes, nervousness, pains from rectum, blurred vision,feeling weak and tired and mood swings/dehaviour.

With your case im not entirely sure as you are older.Im no doctor so i dont really know.All i know is the doctors dont know much about my condition and even to get to this stage was difficult.hopefully ICANHELPYOUTOO will see this thread and help you.He/She knows a lot more than me.

John

[Hannahmoo]

Hi John,

Thanks for getting back to me so promptly. To answer your questions...My symptoms started abruptly 3 years ago April 27th. I had an extreme flush with a heart rate of 145. I went to the ER...I don't remember what my blood pressure was at that time. I did have pain (near gallbladder area) at the same time.

I was referred to a gastroenterologist at U. of PA and I do think I recall that he tested my urine for catecholamines. Unsure of that is a measurement for adrenaline. He said that the levels came back high but he felt it was because of a large urine output. I just dismissed it at the time because I was more worried and focused on carcinoid. He tested me for that as well, with the Chromogranin A blood test as well as serotonin and 5HIAA. The CgA came back slightly elevated but then I tested again and it was noraml. I have the OctreoScan and that too ws normal. I have since learned that unless you ha ve the "receptors" the OctreoScan will not light up. So I am still worried and confused.

I am going to go back to the gastro doctor I now have at Jefferson University and insist on the urine tests for pheochromocytoma as well as re-takes of all the carcinoid blood tests. I also found out that the most definitive scan for carcinoid (the 68Gallium Pet Scan) is now in the US at Vanderbilt. I want to get this scan to once and for all put the carcinoid out of my mind. However, it may be a clinical trial sort of situation at Vanderbilt and I may not be able to get it. In which case, I will insist upon another OctreoScan.

I just turned 50 and one doctor chalked it up to menopause but the flushes and pain are much different than the "hot flashes" described by most women.

Can you elaborate on your symptoms a little bit more? I am unfamiliar with Pheochromocytoma. Do you have high blood pressure associated wit your flushes?

Hope all turns out well with your results on the 13th. Hope to hear from you very soon.

Thanks,
Claudia

[C04455860]

hi hannahmoo i hav to wait til the 13th June when i get the results of the second urine test.the doctor told me my adrelaine levels were slightly high and wanted to do the urine test a second time, just to be sure.i dont suffer from abdominal pain.were your adrelain levels high and how long have you had your condition?my i also ask what age you are?

Thanks

John

[Hannahmoo]

Hello...I have very ssimilar symptoms but I also have URQ abdominal pain and nausea. I just wanted to know with your flushes, do you have abdominal pain? Did you have your CT scan yet?

I have been tested for carcinoid and scans were negative...however, I am sill afraid I have it. I have read many people with carcinoid have had normal scans and blood tests. My 5HIAA was normal but my Chromogranin A was very, very sligtly elevated.

My flushes are daily and I do sweat with them.

My question to ICanHelpYouToo ....Can you tell me if a regular abdominal CT will show a pheochromocytoma or does it have to be a special kind of CT?

I am frightened and have been experiencing many puzzling symptoms in addition to the flushing and my gastroenterologist is without any anwers for me?

Hope to hear from you both. Thanks in advance for your reply.

[ICanHelpYouToo]

Yes, CT is excellent for detection adrenal tumors (pardon my misspelling earlier).


The adrenals are small gland on top of the kidneys. Each weighs about as much as a nickel.

[C04455860]

will a ct scan detect adreanal tumors? and where would they be based?

thanks

john

[C04455860]

no i havnt had a ct scan. i think he is waiting for the results from the urine sample.

thanks

john

[ICanHelpYouToo]

Do you have a CT yet?

[C04455860]

hi i can help you too,

thanks for the response.my blood tests were normal but my urine samples showed a slight increase in adrealin levels.could this slight increase in adrelain levels cause my symptoms and could the mdma taken 8 days before the urine sample interfere with my adrealin levels.

thanks

john

[ICanHelpYouToo]

He's checking for adreanal tumors, not carcinoid.

specifically, he is checking for a pheochromocytoma, generally a non cancerous tumor of the adreanal that may need surgical repair.

his urine and blood tests are very important.

lokely a CT of MRI of the abdomen will follow.

[C04455860]

other symptoms tat i forgot r i feel faintly when i stand up and have redness on upper body and neck.my body can also turn red on exposure to hot/cold and almost always have sweaty hands and feet.

thanks

john