Carcinoid tumors?

[Leahjf]

It started in February when I kept getting bouts of tachycardia even though I have very low blood pressure.  I have been getting hot flushing sensations on my chest and face for a few years now and it mainly only happened when I was drinking alcohol, so I just ignored it. Now it happens pretty much constantly. I have had abdominal pain as well for a few years and also ignored that because I did not have insurance up until a few months ago.  Now my abdominal pain is horrible, my eye sight is getting worse by the day, I can't eat very much because it makes me nauseated so I have lost 15 pounds within the last month.  I get head aches which I have never had before, the veins in my hands and arms bulge sometimes, I get very dizzy and confused a lot, and I have had black stools on and off which leads me to believe that I may have a carcinoid in my small intestine.  I have decreased hearing in my left ear, with numbness on that side of my face.  I had this painful lump on my forehead by my left eye that I popped with a needle because I thought it was a pimple, but after I popped it, my pupils started to dilate and my heart started beating hard.  That's another thing that makes me think I have carcinoids. I have had several tests done, but they have all come back negative: MRI of head, TSH levels, my glucose was a little high even though I was fasting, but my DR. just disregarded it. It was at 100.  I've had my eyes checked by 2 opthalmologists and I've been to an ENT which was a joke because after I told him the symptoms about my ear he just looked into it and it was clear, so abviously I don't have an infection, so he just said it was TMJ.  I think after I popped that thing on my forehead, the cancer spread to other parts of my face including the nerve for my ear.  I have had a 24 hour urine test for catecholamines, an electrocardiogram, and a holter monitor.  My first Dr. said that I had PVST, but I later found out that was a lie from an electrocardiologist.  My original Dr. just kept telling me I'm a hypochondriac and put me on Lexapro which is making my symptoms worse which also points to carcinoids because of the excess serotonin making the liver harder to process it since with carcinoids there is already too much of it. My feet and hands are always cold and fall asleep very easily.  I have lower back pain and went to a chiroprator and he said my spine was straight, but when he took an xray of my lower back, he saw white spots all along my colon, which were probably my vitamins, but he thought it was weird that they weren't being digested. I have a gastro appointment tomorrow, so hopefully I get some answers because this is really frustrating!!! Any suggestions as to what this might be would be very much appreciated!
Thank you!

[patient915]

Welcome to the gastroenterology community!  I think it is incredibly unlikely that you have a carcinoid in your small intestine.  It wouldn't give you most of the symptoms that you are describing.  If it had dramatically spread (therefore possibly causing your other symptoms) you would be having a lot more serious problems and your MRI would be abnormal.  What other testing have you had done?  Have you had a CBC (complete blood count)?

[Leahjf]

Thank you.  The MRI I had was without contrast, so I don't know if it maybe wouldn't pick up things that were small.  I'm not sure if I had a complete blood cell count but if I did it was normal. I have an appointment today so I will ask.  What other serious symptoms would I have if it had spread?  I just feel terrible all the time.  After I popped that pimple thing on my face, I couldn't even get out of bed for a few days, my heart was racing and I literally felt like I was dying and I couldn't sleep.  Every morning when I wake up a feel nauseated and I feel like I am going to puke but nothing comes out.  I just hope the Dr's figure this out before it's too late.

[patient915]

My point is just that if you had a carcinoid in your small intestine that had spread enough to be causing all of your other symptoms, you would be having a ton of blood in your stool, you would be getting lots of fevers, passing out, and in general just be a lot sicker.  I know you feel very sick right now but I'm talking about symptoms that people have when they are close to dying, not just feeling crummy (but I do understand how terrible you feel).  Popping that pumple thing on your face had nothing to do with cancer; that is not how cancer spreads.  I would recommend making sure you have had a CBC.

[Leahjf]

Okay, thanks.  I really do feel horrible all the time, and if I burst a tumor, how would it not spread?  I appreciate your advice, I just know there is something seriously wrong with me, but my Dr's haven't figured it out yet.  I can barely get out of bed most of the time. I just want to feel better.

[patient915]

Cancer spreads on its own, not by pressure/puncture on it.  That was not a cancerous tumor that you popped.

[Leahjf]

Okay, thank you.  I hope that is not the case, but can't cancer spread more readily if a tumor bursts?  I had my gastro appointment today and the Dr is testing me for Celiac's disease.  I mentioned carcinoids to him and he said it is a possibility, so I guess I will find out after my colonoscopy.

[Leahjf]

Okay, thank you.  I hope that is not the case, but can't cancer spread more readily if a tumor bursts?  I had my gastro appointment today and the Dr is testing me for Celiac's disease.  I mentioned carcinoids to him and he said it is a possibility, so I guess I will find out after my colonoscopy. .

[patient915]

Also, tumors won't really "burst".  Your symptoms do not fit with cancer.  You need a CT scan of your abdomen or a small pill (pill cam) study to rule out a carcinoid in your small intestine.

I think you need to stop worrying about cancer. All of this worrying and panic is not going to help your symptoms.  When you start thinking about it, try to think about something else by reading the newspaper, doing a puzzle, or watching tv.

[Leahjf]

From what I have read about carcinoid it seems like I have every symptom.  I hope that's not what I have, but I don't know what else it could be.  I know I shouldn't focus on it, but it's hard to take my mind off of it when I feel like this.  At my appointment today, I found out I lost another 5 lbs in 4 days! I went from 155lbs to 135 in a month.  It's really scary.  I hope it's just Celiac because at least I could manage that.  Thanks for the advice, I appreciate it.

[Leahjf]

Oh and I stabbed the "tumor" with a needle and all that came out was blood, and my eyes have been red ever since and I have been getting headaches after that too.  So I wouldn't say it burst, but it was punctured and I had a black scab on it for a while.  My left eye hurts too and is getting worse.  It looks like it has new veins growing in it too.  The bump that I popped was the same color as my skin and it was hard and sore and I had it for about a year.  The reason I popped it was because when my eye sight started getting worse, I could feel some kind of vein coming from my eyesocket up to the bump and it wasn't there in my other eye.  I know I sound crazy but I really think the bump has something to do with my eyes being blood shot and not being ablt to see. Like maybe the tumor vascularized from that bump to my eye.  Now I'm getting another bump right next to it.  And when I popped the "tumor" my eyes started to dilate and my heart rate was super fast which leads me to believe it was filled with a hormone that would cause that.  I know you probably think I'm nots but I'm just telling you what I felt and saw when I did that.

[patient915]

I truely do not mean to offend you, but you are over-thinking this and over-researching this way to much.  The chances of you having a carcinoid tumor in your small intestine that has spread all over your body giving you these symptoms in incredibly slim.  Check if you have had a CBC (you most likely have; this is one of the most commonly done tests).  If your CBC is normal (or mostly normal) I think that you and your doctor can comfortably completely eliminate the possibility of a metastasized carcinoid tumor in your small intestine.

[Leahjf]

Okay, thank you. I truly hope that is not the case, but I feel completely horrible all the time and it is getting worse.

[patient915]

I know the feeling.  For a long time I had all these symptoms that seemed unrelated and we couldn't find a cause.  I eventually was diagnosed with an autonomic neuropathy/dysautonomia which means by automonic nervous system doesn't function properly.  This "caused" severe gastroparesis where my stomach is basically paralyzed.  I have been 100% fed into the J portion (into my small intestine) of a GJ tube in my abdomen for over a year and I have a tunneled IJ line (central line) in my chest to receive medications and magnesium.  My point is that there are many many different things you could have that all have many symptoms that don't seem to fit together.  Obsessively focusing on one possibility is only going to cause you more worry and stress, which can definitely worsen your symptoms.

[Leahjf]

I'm sorry to hear that.  Thank you so much for the input.  I know that it could be a bunch of different things; I just want it to get solved because I hate feeling like this.  I just want to get better because this is ruining my life.  I have my gi appointment tomorrow, so I'll let you know what happens there.  Thanks again.

[patient915]

I hope the appointment is helpful, keep us updated!

[Leahjf]

My appointment went well today.  My dr said everything looked normal but he took a few biopsies just to be safe.  One of my celiac tests came back positive I'm just waiting on the other three. So I will keep you posted. Hopefully it's just celiac, but I don't know where all the other symptoms would be coming from.  

[patient915]

It could be celiac.  Because it is an autoimmune condition, it can cause almost any symptom.

[Leahjf]

I just hate that no one can figure this out.  My eye sight in my left eye is getting worse and my eye hurts.  Also I have decreased hearing in my left ear.  And I don't know how that could be related to celiac, but I really think it is related to popping that thing on my forehead.  How did they finally figure out that you had dysautonomia?

[patient915]

I don't think there is any symptom I can think of that I would say is NOT caused by an autoimmune disorder (ex. celiac).  Those symptoms you are having would definitely be rare for celiac disease, but I don't think it would be unheard of.  You can try asking your questions about celiac disease on the celiac disease community.

[patient915]

My mom (who is a doctor) and I noticed that all my symptoms were related to the autnomic nervous system.  I would get a fast heart rate, my eyes would become dialated, my face would become very flushed, etc.  We made an appointment to see a cardiologist who specializes in POTS (which is one of the most common forms of a dysautonomia).  She did a poor man's tilt table test (taking blood pressure and pulse laying down, sitting, and standing), and from that concluded that I have POTS.

[Leahjf]

Yeah I saw an electrocardiologist and he had me sit down and stand up a few times while monitoring my blood pressure and he said that I didn't have POTS.  I think it's possible that I may have an autoimmune disease though because I get bruises all over my body without getting hurt and I get weird rashes sometimes that itch. My veins also bulge a lot, which may be vasculitis. My skin is also very weak and thin, like I took a bandage off and my arm started bleeding and my skin peels easily.  I'm just so stress out about all of these symptoms I'm having because it seems like the doctors are never going to figure this out because I have too many things going on at once that they don't know where to start.

[patient915]

POTS usually has nothing to do with a change in blood pressure.  It's an increase of 30 bpm or more after standing.

[Leahjf]

Oh really?  He was just checking my blood pressure when I stood up and sat down.  I'm just really scared because I want to get this figured out and the doctors can't find anything.  It's really frustrating and I feel like giving up because I can't afford to keep going to the hospital.  How old were you when you found out you had POTS?

[patient915]

Yes, most people with POTS have their blood pressure remain mostly normal when going from laying down to sitting to standing.  I was 17 when I was diagnosed with POTS.  Here is a good article on POTS:

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising.

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm