How often are high 5 HIAA levels a false alarm?

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How often are high 5 HIAA levels a false alarm?

by Cleopatrani on Fri Dec 16, 2011 11:50 AM

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Ive been tested for absolutely everything in an attempt to find out why I flush so much (and other symptoms). The very last test they did was for 5 HIAA levels (serotonin). After 18 months of everything else coming back normal this new test for 5 HIAA came back high. 33mg (in in the UK, I think in the US you use different meausements - but in the UK the average healthy levels is around 3mg). 

Anyway, my hospital doesn't specialise in Carcinoid so they have ordered a barrage of tests and sent them to another hospital. But I've been told I will have to wait 2-4 MONTHS for the results! (It has been a month already and I've heard nothing yet). So basically I've been told I might have cancer but wont know for months. As you can imagine, I am going out of my mind.  

The consultant seemed to think that the high 5 HIAA levels were probably just nothing to worry about. I don't know if she was just saying that to stop me worrying. Anyway, my question is... how likely is it that the high 5 HIAA turns out to be nothing?? How often does someone test for high levels for no reason?  Do you think this is likely?

Would appreciate any replies. Im a 34 year old single mama to 4 kids living in Northern Ireland, slowly going out of my mind.

 

RE: How often are high 5 HIAA levels a false alarm?

by LauriG on Thu Dec 29, 2011 03:07 PM

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Hi Cleopatrani,

Sorry to hear that you have hopped on the scarey slow carcinoid rollercoaster. I am a 37yo from Australia, and I know that one of my blood tests had to get sent to the other end of the country and took more than 4 weeks each time it got tested.

My 5HIAA has always been normal, but if you look at websites such as labtests online I think it lists possible causes of false positive 5HIAA (apart from if you didn't stick to the diet!).

As traumatic as the wait is, the good thing about Carcinoid is that in most cases it is very slow growing. Most people have had the symptoms for years before being diagnosed. For me it took 12 months from when I first got pain to when I started on treatment, but I had been having other symptoms for many years and just hadn't known it (flushing was my first symptom). The average time from presentation to diagnosis has recently dropped from 9yrs to 5yrs as doctors have become more aware of it.

My local doctors had determined that I did not have carcinoid (because no tumours have shown up on any scans and my blood tests keep fluctuating between high and normal), so it was only because I spent many months on the internet hunting down info and being linked in with a specialist in another state that I was able to get the diagnosis. What helped in the diagnosis was that I began a symptom diary on a calendar, documenting when I flushed (and whether it was a mild, moderate or extreme flush), when I got heart palpitations, diarrhoea, abdominal pain etc. This showed a progression of symptoms over a period of months. I also took photographs of my flushes that I showed to my doctors. I was started on treatment as a trial and the impact on my symptoms was dramatic (in a good way!).

I really do hope that it turns out that you don't have carcinoid, but flushing and elevated HIAA would raise my suspicions. I am happy to talk more / provide more info about what I have learned about carcinoid if you feel that would be helpful for you.

Blessings, Lauri.

RE: How often are high 5 HIAA levels a false alarm?

by Mustameet on Sat Jan 14, 2012 11:59 PM

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On Dec 16, 2011 11:50 AM Cleopatrani wrote:

Ive been tested for absolutely everything in an attempt to find out why I flush so much (and other symptoms). The very last test they did was for 5 HIAA levels (serotonin). After 18 months of everything else coming back normal this new test for 5 HIAA came back high. 33mg (in in the UK, I think in the US you use different meausements - but in the UK the average healthy levels is around 3mg). 

Anyway, my hospital doesn't specialise in Carcinoid so they have ordered a barrage of tests and sent them to another hospital. But I've been told I will have to wait 2-4 MONTHS for the results! (It has been a month already and I've heard nothing yet). So basically I've been told I might have cancer but wont know for months. As you can imagine, I am going out of my mind.  

The consultant seemed to think that the high 5 HIAA levels were probably just nothing to worry about. I don't know if she was just saying that to stop me worrying. Anyway, my question is... how likely is it that the high 5 HIAA turns out to be nothing?? How often does someone test for high levels for no reason?  Do you think this is likely?

Would appreciate any replies. Im a 34 year old single mama to 4 kids living in Northern Ireland, slowly going out of my mind.

 

If your on a PPI (Proton Pump Inhibitor) like Prilosec your 5HIAA results will be elevated.  Many patients 5HIAA results are falsely elevated due to PPIs.

RE: How often are high 5 HIAA levels a false alarm?

by Jenholm25 on Mon Jan 30, 2012 02:21 AM

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Cleopatrani & LauraG -

Have either one of you had an octreoscan?  Scans missed my carcinoid cancer for years.  Finally in Feb. 2010, a CT scan found a "slight thickening of the terminal illeum wall".  That was it.  My GI dr knew enough to go in and biopsy the area.  Problem is...  the scans also didn't pick up the lymph node involvement or the cancer cells that had spread to my liver....  But - the octreoscan did.

After surgery, I continued to have carcinoid  syndrome.  CgA - has always been normal.  5-HIAA has been both normal and high.  Now, at 2 yrs since my dx, I have mets to my mediastinal (chest) lymph nodes and liver.  I still have carcinoid syndrome which we continue to treat with monthly Sandostatin shots.

Yes, the 5-HIAA tests can take a while to get back.  There are only a few labs around the world that can run those tests.

Please feel free to ask any questions.  I don't claim to know all of the answers, but i've done a lot of research and have gotten to know many people with carcinoid cancer.  :)

My best,

Jen

RE: How often are high 5 HIAA levels a false alarm?

by LauriG on Tue Jan 31, 2012 01:01 PM

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Hi Jen,

Yes, I have had many scans including ultrasounds, CTs, MRIs, and Octreoscan, and I just got back from having my second PET scan, and we still have not been able to find any tumours! So at this stage they are proving too elusive!

RE: How often are high 5 HIAA levels a false alarm?

by SueCz on Tue Jan 31, 2012 04:04 PM

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Good morning ! Is it OK if I call you Cleo for a nickname ? Although Cleopatrani sounds lovely(I'm sure it better with your Irish lilt!), but I have a harsh Boston accent and you would not recognize your name.

First, the major advantage to carcinoid disease is that it is very slow growing. There is a rarer more rapid developing type of presentation, but that would become clear soon. Many of us suffer and are seeing physicians on a routine basis and it still takes years to become diagnosed.It is very promising that your physician and hospital are being very proactive for your care. Still, to wait 4 months regarding a cancer diagnosis, is unacceptable. Do you have anyway to complain and move things along quicker? I mean they cannot leave the blood sitting in the lab for to long before testing it , so the delay must be in getting results back to you. In this computer age that seems inexcusable!

Has anyone inroduced you to the web site www.carcinoid.org " target="_blank" rel="nofollow">www.carcinoid.org ? This site has almost everything you need for information and if it can't answer your question it will link you to an appropriate site. There are areas for patients and physicians. There is a large section for new patients that explains from symptoms to tests to treatment.  There is also a physician section. Your physician can read or speak with specialist from all over the world on this site. Also the ENETS is European Neuroendocrine Tumors Society is available for describing standards of care and recommended testing.

5HIAA testing is notoriously inaccurate. Just the act of drawing blood can transiently raise the serotonin level. Normally, the serotonin level will flucuate during the day according to activity levels, normal stressors, anything.The urine test must be properly cared for, kept cold during collection and apreservative added to the jug as soon as it arrives in the lab. Biomarkers are very important and can help pinpoint where the disease may be. Gastrointestinal tumors secrete different hormones then Lung or Pancreas may. All this can easily become overwhelming for you. So it would be very good for you to begin reading www.carcinoid.org " target="_blank" rel="nofollow">www.carcinoid.org .

Do you have any symptoms beside the flushing you can tell us about ? Diarrhea, wheezing, apetite change, pain?

There are Carcinoid Specialists in the UK and a large number of Americans are traveling to Bad Berka,Germany and Basel Switzerland for PRRT treatment(a radioisotope) not available in the US. Also there is a very popular specialist Dr Dan Granberg in Sweden, whose special CAT scan machine is viewed as top level.

Read, Read, Read !

SueCz

RE: How often are high 5 HIAA levels a false alarm?

by Cleopatrani on Tue Jan 31, 2012 09:28 PM

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Hey and thanks all for your replies.
Well, I still haven't officially had my results yet but do have an appointment to get them on 17th Feb. However I phoned the hospital and begged them to put me out of my misery.  The secretary said that my serotonin results had  come back fine the second time and they were no longer worried about me. 

Whilst this has set my mind at rest a bit, I cant  help wondering if they should test again, just to make sure?

My original serotnonin was high.  My other symptoms are flushing, weight gain, IBS, stomach pains (up really high near the diagphram and really low around the bladder area), very high blood pressure, vitiligo, brown patches of skin, headaches, problems regulating body temperature.

Ive been tested for absolutely everything and apart from my ridiculously high blood pressure, they can't find anything wrong with me. And are giving no reason why a relativing healthy living, averagely fit 35 year old would have the blood pressure of a 30 stone couch potato.   

RE: How often are high 5 HIAA levels a false alarm?

by Jenholm25 on Wed Feb 01, 2012 03:26 AM

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Have you been to an endocrinologist?  They take a very up close look at body chemistry.  They will be interested in figuring out WHY your 5-HIAA has been high and then normal.

RE: How often are high 5 HIAA levels a false alarm?

by LauriG on Wed Feb 01, 2012 05:45 AM

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Hmmm ... don't want to alarm you, but your situation sounds very similar to mine. I was 35yo when I got sudden onset abdominal pain and diarrhoea (could count on one hand the number of tummy bugs in my adult life) that I thought was appendicitis. Within 2 weeks I had my "healthy" appendix out. The surgeon had noticed I was flushed in hospital and ordered the serotonin test (blood) which came back high. I had flushed for most of my adult life, although colleagues said that they had noticed the flushing increasing over about a 5 year period. I had also developed unexplained heart palpitations about 4 years before. I developed high BP (which is confusing because most things I have read associate carcinoid with low BP). After I had the appendix out I had ongoing pain near my diaphragm (sometimes like a stitch or throbbing, sometimes like I was swollen inside), lower right abominal cramping and some lower right back pain, and constantly thought I had a urinary tract infection. I also developed diarrhoea over time, although this was not dramatic, was more about frequency. Post surgery my flushing escalated in frequency, duration and extensiveness. All of this continued until a doctor started me on injections of Sandostatin, which is used to treat Carcinoid Syndrome. All of my symptoms decreased / went away, including the UTI feeling. Now I only get occasional pain and flushing, usually around the time I am due for my injection. Through all of this my 5HIAA has been normal, my blood serotonin has constantly fluctuated between high and normal, and no tumours have been found on any scans. And I am not the only one, my doctor has about 5 other patients like me where no tumours have yet been located.

So ... I would suggest asking for further investigations and monitoring, if trialling you on treatment is not an option. You know your body, and your body is telling you it is not happy.

RE: How often are high 5 HIAA levels a false alarm?

by AngDragoo on Wed Feb 29, 2012 06:23 PM

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Hi, I am a 48yr old female who has been seeing an Endocrinologist since June 2012 for symptoms of carcinoid syndrome. I was referred by the emergency room where I ended up with severe tremors, high blood pressure, rapid heart beat and facial flushing. I went because less than a year before I had an unexplained pulmonary embolism and was afraid I was having another. Long story short, all tests have come back normal excepty urine 5htp and blood serum serotonin. The dr said these are mildly elevated but was concerned enough to send me for an Octreotide scan, which came back clear, and then CT scans which also were clear. I am having " episodes" 3-4 times a week and it is becoming quite scary. They have me taking an Adivant to ease my heart rate. My issue is my doctor has said they have ruled out anxiety/ panic attacks and many other diseases, but she doent have an answer. All her collegues say it all points to carcinoid, but not test have been enough for a diagnosis. She has suggested to try the Sadostatin injections for relief of my symptoms and to possibly help with a diagnosis. When I asked her about this treatment she told me that she really didn't know much about it, that was real reassuring. I ask to be referred to a carcinoid/NET specialist within the Kaiser/Portland Oregon system where I have insurance or out to OHSU which I know has a specialist that is listed on the carcinoid. Org site. I was told that I could not be referred out of the system and that I could get a second opinion from one of her collegues! And then referred me to a gastrenologist who I see on Thursday. I don't want to start a drug my dr knows nothing about and feel I should be able to see a specialist. I'm so tired of this process and the you have cancer, no you don't, maybe you do tooled coaster ride I have been on. I live alone and these attacks are scary. Any suggestions??? Help Thanks, Angie
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