5-HIAA Results

feellikea# · New User Joined: 05 Jul 2007 Posts: 1

I received 2 results so far and waiting for a 3rd.

1st test was blood serotonin serum

limit: 0-420
result: >452 H ng/mL

2nd test was 5-HIAA

limit: 0-8
result: >51.8

now i am waiting for a repeat i did of the 5-HIAA 24 hour urine.

i was told it was 100 fold high so he wanted to do it again. i looked up carcinoids on the web and found this:

[quote]Elevated levels of 5-HIAA, a by-product produced when serotonin breaks down in the body, can be detected from a urine sample. This test can positively detect carcinoid tumors 73% of the time, and is nearly 100% accurate, meaning that a positive result is rarely wrong. However, the level of 5-HIAA only becomes elevated when carcinoid tumors have metastasized to the liver, making the potential for a cure unrealistic. 5-HIAA testing is useful to estimate the extent of disease and survival.[/quote]

source: carcinoid.com

i suppose one should be careful about researching prior to diagnosis. it has become an obsession and i am quite distraught by the information i am finding. got any tips on one or 2 reliable places for me to limit myself to that can give me my info fix while waiting for dx? i am feeling 100% responsible for my health and the conflict is i do not know what to do now other than wait or read? kind of hard to just go on with every day living even though i know it's best. i want to know what my results mean but my doctor is a busy guy so i need to wait for results #2 to come in next week sometime. i keep thinking if they were high last time why would retaking them change that. let's move now!

thanks for letting me vent here

brainman · Posted: Thu Jul 05, 2007 4:26 pm Post subject: Re: 5-HIAA Results

Hi and welcome to the forum.

You said to be careful about doing too much research prior to diagnosis. You are correct. It can be very easy to come to the wrong conclusions. However, it can also inform your questions to ask your doctor next time you see him/her. In other words, you will not be totally lost. But wait for the doctor to diagnose you.

Feel free to vent all you want Very Happy

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Bethany · Regular Joined: 01 Apr 2007 Posts: 19 Location: Sydney

Hello friend,

My husband has had all the tests you describe with similar results. Unfortunately, he has been waiting for some specific diagnosis for seven months!! Every week there has been more tests and a different doctor so you'll need to be patient. One doctor told him that he knows a man who has had Carcinoid for 20 years without finding the primary tumour. Good and bad news!

I recommend you go onto the Carcinoid Foundation web site and browse the archives of the forum there. The members are very helpful as they are here. This cancer is a rare one, and much has been written about it, but doctors are not very familiar with it all. For me it was 'therapeutic' to research as much information as I could. This sounds strange, but when we went to the doctor it was such a relief because we knew my husband wasn't as bad as some I'd read about! Also it's important that you are informed well enough to explain it correctly to your family.

Wishing you all the best - do contact me if you need some more information.

Bethany in sunny but cold Sydney
_________________
Bethany in sunny Sydney

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