Discussions By Condition: I cannot get a diagnosis.

Is this Carcinoid?

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: aprilmae76
  • October 27, 2009
  • 01:31 AM

I had been seeing a Pulmonologist for over a year due to shortness of breath PFTs only show issues with diffusion. He sent me to see a cardiologist due to rapid heart beat on exertion. Cardiologist did a stress test which i faile in 3.5 minutes due to a hb of 183. I am 33 and physically fit. Next an echo was done and slightly restrictive left sided heart damage was found along with an EF of 50 and regurgitation. For many years I have gotten severe flushing on my chest and face which looks like a severe sunburn. The cardio doc saw this and sent me to a endocrinologist to test for carcinoids. First 5-HIAA came back 49 reference 1-14.5 repeated the test during a red episode and test came back 62.3 same reference range. Doc is scheduling the Octreotide Scan but she seems very disinterested. Says she wants the numbers to be over 100 for carcinoids. My numbers are much higher than normal so why would she not think this is carcinoids? Any other opinions??

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11 Replies:

  • He sent me to see a cardiologist due to rapid heart beat on exertion. Cardiologist did a stress test which i faile in 3.5 minutes due to a hb of 183. I am 33 and physically fit. Ok couple of questions ... you say you are physically fit, but you failed the stress test, and you had a rapid heart beat on exertion ? How does that work ? Secondly I know I'm only a 3rd year med student but as far as I know the term carcinoid means cancerous... now don't get all flustered and panicy Its more likely that I don't know what I'm talking about. Perhaps some other enlightened member can let me know what test OP's talking about.
    gungwane 62 Replies
    • October 27, 2009
    • 08:08 PM
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  • i am 5'5" 140 pounds and go to the gym 5 days a week... I push my heart and lungs in an attempt to improve performance but it literally kills me. Going up a flight of stairs is exhausting. My BF is a personal trainer so being idle is not an option. You can be physically fit and have your heart and lungs not cooperate with your body. FYI i go in for my scan on Thursday
    aprilmae76 3 Replies
    • October 27, 2009
    • 08:11 PM
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  • i am 5'5" 140 pounds and go to the gym 5 days a week... I push my heart and lungs in an attempt to improve performance Ok and for the rest of us who aren't from America and use the metric system I assume those obscure numbers you posted mean you are really thin etc. However, that is not what fitness means, fitness is the amount of time it takes your heart rate to return to baseline after exertion. By the sounds of it, you are doing an excessive amount of exercise, maybe thats why you are so tired ? Exercising whist you have certain viral infections can actually do some severe damage to your heart such as the damage you described on the echo. Continuing to exercise when you already have regurgitation is a BAD idea in my humble opinion, maybe you should at least take it easy until they have figured out what is wrong with your heart. What is an EF ? Did you perhaps have rheumatic fever as a child, or recently ?
    gungwane 62 Replies
    • October 28, 2009
    • 07:39 AM
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  • I personally do not have any doubt that you do have Carcinoid -- the flushing and an elevated 5HIAA (that is *four times* the norm) would certainly indicate this is true. I don't think your physician has any experience with Carcinoid -- but she is doing the right thing by ordering an Octreoscan. That's a good start. Please check out carcinoid.org for more information and also check out the Neuroendocrine Tumor Clinic at Kenner, Louisiana, located in the Ochsner Medical Center there. You will find a complete team of expert and most experienced physicians and others all very well versed in treating this rare and orphan disease.At a time like this you need to seek out the best possible care, and as a ten-year survivor, I believe this is the best place to find it. I wish you well!
    Anonymous 42789 Replies
    • October 28, 2009
    • 02:17 PM
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  • Thank you for your response. I too believe it is carcinoid I will have my scan tomorrow. Hopefully they find it the first time around.
    aprilmae76 3 Replies
    • October 29, 2009
    • 00:50 AM
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  • I am concerned about your heart firstly. Your lack of energy shortness of breath and flushing are likely due to the heart damage. secondly, 5HIAA is a metabolite of serotonin, so the test shows how much serotonin is in use in the body by measure of its metabolite (its an if A=B and B=C therefore A=C measure). Heart conditions and anxiety/depression or mental stress in general can raise serotonin levels and therefore 5HIAA goes up. seeing as this has been troubling you for about a year, is is most likely stressful therefore this is a logical theory. I would worry about your heart, and circulatory issue and what you can do to fix it before you become overly worried and disturbed about the possibility of cancers.
    Croatiamedstudent 32 Replies
    • October 29, 2009
    • 05:48 AM
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  • I am concerned about your heart firstly. Your lack of energy shortness of breath and flushing are likely due to the heart damage. secondly, I would worry about your heart, and circulatory issue and what you can do to fix it before you become overly worried and disturbed about the possibility of cancers. I'm with the Croatian on this one. You only have one heart.
    gungwane 62 Replies
    • October 29, 2009
    • 06:12 AM
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  • I agree I only have one heart hence my concern. Something is causing the heart damage and all other possible causes have been ruled out. At this point I am hoping for a benign carcinoid that can be removed and then the risk of further heart damage would dissipate. Don't get me wrong I know carcinoids aren't good either but at least it is something tangilbe that I can fight. That's Better than a mystery causing shortness of breath and heart damage. Iwould love to make it another 60 years so I need an answer for what's causing this. Thanks for your responses. I am waiting for my Octreotide scan as we speak.
    aprilmae76 3 Replies
    • October 29, 2009
    • 05:53 PM
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  • Carcinoid cancer tumors secrete serotonin among other hormones. Serotonin can damage the heart valves. 5-HIAA is not the definitive blood test although it is a good diagnostic tool. Chromagranin A is a more reliable test and should also be administered.Unhappily, most doctors - even oncologists - know little to nothing about carcinoid. As another poster suggested, go to carcinoid.org for a lot more information.
    Anonymous 42789 Replies Flag this Response
  • Hi, I am not a doctor, but my sister did die of carcinoid cancer (a very rare form of cancer). I know they can call cancer cells carcinoids but she had carcinoid cancer.My sister had continued blood tests which showed (nothing alarming) to say she had cancer. The blood tests failed her. After my sister died I went to a liver specialist as I had a huge 6cm haemangioma on my liver and my sister was told after failed blood tests that she only had haemangiomas which later we found out were cancer. The liver specialist said that carcinoid cancer could be passed through families so he gave me a urine test (which I had to fast for), I think if I remember rightly that I wasn't allowed to eat certain things like tomatoes for about a week. He said that the blood test would not work and only the urine test would show if I had the cancer. By the grace of God, I do not have the cancer. My sisters symptoms were rapid weight loss, these huge red patches appearing all over her body including behind her legs and knees, tiredness, running to the toilet for her bowels, fatigue, shortness of breath and heaps of hot flushes. She even thought that she was miracously pregnant at one stage as she had all the symptoms. She said to me that she knew something was wrong with her and she just thought she had cancer and the doctors told her that nothing was wrong with her. They then told us that carcinoid cancer was such a slow growing cancer that she would live for years and she died not long after diagnosis. They found out she had the cancer when she fainted and ended up in hospital and couldn't breathe properly (apparently the cancer was strangling her bowel) so they gave her emergency surgery which is when they then realised she had cancer. I hope this helps. I had been seeing a Pulmonologist for over a year due to shortness of breath PFTs only show issues with diffusion. He sent me to see a cardiologist due to rapid heart beat on exertion. Cardiologist did a stress test which i faile in 3.5 minutes due to a hb of 183. I am 33 and physically fit. Next an echo was done and slightly restrictive left sided heart damage was found along with an EF of 50 and regurgitation. For many years I have gotten severe flushing on my chest and face which looks like a severe sunburn. The cardio doc saw this and sent me to a endocrinologist to test for carcinoids. First 5-HIAA came back 49 reference 1-14.5 repeated the test during a red episode and test came back 62.3 same reference range. Doc is scheduling the Octreotide Scan but she seems very disinterested. Says she wants the numbers to be over 100 for carcinoids. My numbers are much higher than normal so why would she not think this is carcinoids? Any other opinions??
    Anonymous 42789 Replies Flag this Response
  • Ok couple of questions ... you say you are physically fit, but you failed the stress test, and you had a rapid heart beat on exertion ? How does that work ? Secondly I know I'm only a 3rd year med student but as far as I know the term carcinoid means cancerous... now don't get all flustered and panicy Its more likely that I don't know what I'm talking about. Perhaps some other enlightened member can let me know what test OP's talking about.Yep, carcinoid is a neuroendrocrine tumor...usually very slow growing, but it you had to pick your poison, this one isnt a bad options.....The flushing has definately gave our physically fit guy away.....octrieotide scan, a 24 hr urine test for different markers. Most carcinoid tumors start in the gut, but could possible start in other organs. Flushing is probably due to the metasis to the liver.....GET IN TO GET YOUR SCAN!!!!! I just had my 6th on today, and I was diagnosed 3 years ago.
    Anonymous 42789 Replies Flag this Response
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