Lovebug Posted January 12, 2012 Report Share Posted January 12, 2012 I will be getting one and am, of course, concerned about how my body will react. I'll already be nervous from just doing the dang CT but getting the radioactive tracer always makes me nervous even though I've had a CT with contrast before. Anyway, wondering what others may have experienced and what results were obtained.TIA Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 12, 2012 Report Share Posted January 12, 2012 I just had one in November. Give me few minutes and i'll type up my experience, will take a bit.quick answer, it was no big deal Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 12, 2012 Report Share Posted January 12, 2012 I had anaphylaxis to CT contrast but have never had an octreotide scan.Do you have a history of allergies? I think Octreotide has a low incidence of allergies etc. Do you have a high 5 HIAA? Are they looking for carcinoid?Good luck and keep us posted! Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 12, 2012 Author Report Share Posted January 12, 2012 I do not have severe allergies, except sinus allergies. However, there is a suspicion of MCAD although my doctor is just starting to consider this at my request. I am very sensitive to certain meds.I'm getting it done b/c I had an elevated VMA on a 24 hour metanephrine test. He was checking for pheochromocytoma. At the time the urine was collected, I was going through a "storm" so I'm not sure if that is why it was elevated. My doc is a cardiologist that treats dysautonomics but he was concerned that at the high VMA and ordred the scan.Thanks for the responses! Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 12, 2012 Report Share Posted January 12, 2012 Mine was done because of extremely high Insulin levels during a 3 hour glucose tolerance test.Just an FYI, I have had, literally, every scan nuclear medicine offers, or close to it. Good thing the techs are cute and funny in nuclear medicine here, I've spent A LOT of time there in the last 2 years.....LOL, They know me by name, birthdate and all.There are NO side effects to radio active tracers at all, unless you have an allergic reaction. It's the drugs they give with them that you can have a reaction too.I also have some type of Mast Cell Disorder, or MCAD and High histamine levels. On enough antihistamines to subdue a horse.The only reaction I had to the Ocreatide was that it stopped my chronic diahrea cold for 5 days, sorry........I know TMI.It's a 3 day test. First day, injection, 4 hours later scanned for 45 minutes. Next day another scan, 3rd day the last scan which is the shortest.They scan mostly from your neck down past your hips unless your doc asks for a full body. They also do a couple of scans over your head and it includes your thyroid.Mine showed........nothing. Easy test though. Lay still and sleep, pretty much it. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 13, 2012 Author Report Share Posted January 13, 2012 Thanks so much Charmed! Great info there. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 13, 2012 Report Share Posted January 13, 2012 Any chance you're on Zantac ranitidine or anithistamines? I had a high 5 HIAA but when I went off those meds and repeated it it was normal. They said they get a lot of false positives from H2 blockersI have MCAS and if I had to get another contrast scan I would premedicate. CT contrast anaphylaxis ruined my life and almost killed me. Radionuclide's are much less likely to cause allergy but I know MCAS patient's who have reacted.Keep us posted Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 13, 2012 Report Share Posted January 13, 2012 Charmed, I've probably asked you this before(sorry!), but how high was your insulin level? Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 14, 2012 Author Report Share Posted January 14, 2012 Any chance you're on Zantac ranitidine or anithistamines?Keep us postedHi! No...no Zantac/antihistamines. I'm actually holding off b/c the doc is about to test for MCAD. I have such bad GI symptoms though so I'm really wanting to start a GERD med.As far as having this scan, I'm sure I won't have a rxn but I'm always nervous. I'm beginning to wonder if I even need it with just one high reading of VMA. I researched that these can often be high from things such as caffiene consumption and stress. Well, when collecting the urine I was definitely stressed b/c I was going through one of my "storms". Also, I can't remember but think I had a Vanilla Dr. Pepper. Thanks for your feedback. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 15, 2012 Report Share Posted January 15, 2012 FYI, my mom has carcinoid syndrome and her tumors have never showed up on an octreoscan because they metabolize the octreotide so quickly. CT scan of the pelvis, abdomen and chest is often useful for detecting neuroendocrine tumors, although the tumor density is different than other GI tumors and sometimes requires an expert eye, not just any radiologist. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 15, 2012 Report Share Posted January 15, 2012 Good points thankful.Lovebug, If you do get a CT please be careful and get a non contrast scan if you can.It was severe anaphylaxis to CT contrast and it's sequelae that nearly killed me and has ruined most aspects of my life...but I'm happy to be alive!! Just sayin' I will ONLY ever get contrast again if I am premedicated and need it for a life threatening reason Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 15, 2012 Report Share Posted January 15, 2012 Sue---- No problem, I don't have my lab right now to look at the exact numbers.But I was drawn every half hour for 3 hours. my baseline Insulin was fine and after that it was bad. At every check my level was double what the highest normal level was. So I think one of the times the highest normal was 155 and mine was 310....something like that.I'll get out my labs for exact numbers tomorrow. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 16, 2012 Author Report Share Posted January 16, 2012 anaphylaxingMy doc ordered the Octeride Scan and CT of adrenals. I don't think it is with contrast but I'll check. Thanks! Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 16, 2012 Report Share Posted January 16, 2012 Oh k good. If you say you don't want contrast, it is TOTALLY you're rite. They can still scan you without it and get a good amount of info. if they say they need it, I would say scan me without it first, then I'll talk the results over with my doctor and go from there as to how necessary the contrast is Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 16, 2012 Report Share Posted January 16, 2012 As far as I know the CT of adrenals is usually done with contrast, better view.I had one with the contrast and was nervous as well because I had a reaction the contrast for MRI.I didn't have any reaction to the CT contrast except for a slightly upset tummy the rest of the day. Not nausea ( I always have that) but some actual belly pain, but it was minor, kind of like menstrual cramps. It went away as soon as I went to the restroom.My doc said that was odd, but I'm odd.It can be disconcerting the CT contrast especially if you get a tech that doesn't tell you what to expect. Make sure you pee first. I was on the table before I was told that when they inject the stuff you will feel like you are peeing, but you really aren't, it's normal.It feels really strange!!! Quote Link to comment Share on other sites More sharing options...
kluesyk Posted January 16, 2012 Report Share Posted January 16, 2012 I had this done three years ago due to an elevated 5HIAA. The tracer they gave me was different than the CT contrast(which I have had hives with before), so I did ok. The hardest part for me was to lay completely still for so long. I had to go back for three days for scans as my body assimilated the tracer and they scanned various parts of my body. Did not find any carcinoid. This past May I had an elevated CGA which is another marker for carcinoid, but it went back to normal on the retest 6 months later.I do have bad facial flushing, nausea, gut pain and a lot of the symptoms of carciod, but no one has ever found anything. Hope you can find some answers and the test goes well.Mine was not bad at all. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 16, 2012 Report Share Posted January 16, 2012 Charmed, that insulin level is high! What did your doctor say about it? They should have done the 5 hour OGTT to see how far you would crash with that high of an insulin! Mine was 190 at 2 hours. At 3.5 hours, my glucose was 55, but no symptoms. Thirty minutes later I was full of symptoms, but don't know how low I went as they gave me OJ.Because Ocreotide helped your diarrhea, have you been tested for carcinoid? That's the med that carcinoid patients actually inject often to control their symptoms, which diarrhea is a major one. Food for thought. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 16, 2012 Report Share Posted January 16, 2012 I've had contrast numerous times and so has my mom (who has carcinoid) and my brother. None of us have ever had a reaction to it. However, the radiology personnel should have the necessary stuff nearby to treat you in case you do have a reaction. CT scans expose you to a high amount of radiation. If it were me, I wouldn't want to endure all of that radiation unless I knew the doctors had the best chance of viewing anything abnormal. This is a good conversation to have with your doctor. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 17, 2012 Author Report Share Posted January 17, 2012 Now that I think about it, I've had CT AND MRI contrast before with absolutely no reactions. I still get nervous b/c an allergy can develop at any time but I'll just pray. I had the same "warm" feeling down there too, LOL, but the tech told me to expect it so it wasn't bad. My heart was going 90 to nothing on that monitor though! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 17, 2012 Report Share Posted January 17, 2012 My heart raced after the contrast, also. The tech tried to tell me it was just nerves, but it didn't happen during the first pass through. It happened immediately after injecting the contrast and lasted a good 15 minutes. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 18, 2012 Report Share Posted January 18, 2012 Anaphylaxing, we're you allergic to the iodine in it? Quote Link to comment Share on other sites More sharing options...
Lovebug Posted February 23, 2012 Author Report Share Posted February 23, 2012 Hi All,Just wanted to give an update since some of you asked. I had my Octeride scan today. Got injected at 9 or 10am, waited around 3-4 hours and then had a 20 min scan. I go back tomorrow morning to have the 2nd scan (same as the first one...20 min). Then I get an IV for the contrast for my CT of adrenals. Everything went great and I left feeling confident.3 hours later: CRASH.....my Fibro/CFS has to be the worst it has ever been and I'm slightly orthostatic (nothing I can't handle...so far). Anyway, the pain is so bad and unrelenting. Pain in my eyes, head, arms, legs, ears, joints, sore throat, EVERYTHING hurts! I took my shower which usually helps, it didn't. I'm laying flat on my heating bad which usually helps, it didn't. I'm so miserable and afraid that the CT dye will "tax" my body and I'll feel the same way. It makes me want to reschedule but this is my only week off from work until spring break.Sometimes I get so angry at this disease!!!/RantSorry but I get like this when I'm miserable. I'm actually one of the lucky ones who have less severe symptoms.Thanks all! Quote Link to comment Share on other sites More sharing options...
Lovebug Posted February 23, 2012 Author Report Share Posted February 23, 2012 Octeride scan is negative....YIPEE!! But Lordy I sure felt bad last night. This morning I refused the CT of adrenals but will see my doctor next Thursday to see if I need to have it done anyway. I may be talking to myself but just wanted everyone to know. Quote Link to comment Share on other sites More sharing options...
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