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Lemons2lemonade

Contrast Iv Dye Got Me Potsy, Who Knew?!

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As per dr. goodman's recommendation i just got my chest ct scan done to rule out sarcoidosis. (I had high ACE levels). So the technician is explaining the process to me and she tells me that the contrast is going to make me feel very warm all over and get this: like i'm peeing my pants! She tells me the reason it does this is because it vasodilates so that good images can be taken of the vessels. I swear when she said it, it echoed (vasodilates... lates ...lates... lates). Obviously the pots warning bell goes off. I explain to her that i have issues with low blood pressure and she says not to worry. I figure, whatever, how bad could it be? Within 10 seconds of the contrast being injected my whole body got hot and i got extremely short of breath--the worst i have ever had. It felt like i was trying to breathe in from a vacuum hose. Then i felt bad--real bad. The closest i've had to that was the nitroglycerine an emt gave me once. Then after the procedure she tells me to be sure to drink a lot of water because the contrast can dehydrate you. Great. I've just been vasodilated, and now i get to be dehydrated. This is going to be a great day! I came home and drank probably a liter or more of water and just crashed in bed. Waking up periodically with dry mouth, chugging glasses of water, and then being so weak i went back to sleep. I have been drinking water all day and i am still light headed---bah! I am just hoping it resolves itself quickly!

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Lemons,

That would be bad for someone who doesn't need to vasodilate. They try to tell you it feels like a hot flash ------WRONG. It's not as bad ---hate to tell those that haven't been through menopause and experienced the "desert heat within your body". It usually does wear off pretty fast and should be out of your system by tomorrow. Hopefully, they won't find anything. But, it's good to have everything ruled out and things either off our plate or put on the table. Feel better.

Issie

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I had a blood test for sarcoidosis; but I did have a lung scan when I coughed up blood once about 8 years ago, and it did the same to me. It was the strangest feeling. Yes, drink loads of water....I always get a head ache after contrast with MRI's, too. It should pass quickly, though. I hope you get an accurate result to your testing. To better days.

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I have a CT scan today for my adrenals and pancreas. The last few CTs have really made me feel awful, also. My heart races and pounds for about 30 minutes after the dye is injected and the adrenaline just gives me anxiety. Of course, the techs try and say it is due to anxiety from having the scan. I know it is the dye, because I don't get any feelings until immediately after the dye is injected.

I don't ever have any lasting effects from it. I feel almost normal within an hour or two.

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For those of you who have had odd reactions to IV contrast media, you may want to consider that contrast media is a known mast cell degranulator, meaning it is known to release histamine and other mast cell mediators. People with normal body chemistries may only feel the slight funny taste in their mouths and the sensation they just peed themselves because their bodies can hold their counter regulatory mechansims in check. But those of us with messed up autonomic nervous systems and potentially trigger happy mast cells will undoubtedly have a host of reactions that the average CT tech has not witnessed before.

I don't by the "anxiety due to the test or results theory". Contrast is obviously causing some kind of cascade in us, and the breathing issues may be attributed to decreased cardiovascular output or mast cell/histamine related chest constriction or something else entirely. It would make sense that our varied symptoms after contrast injection is related to our varied alltered body chemistry.

Good luck on the results lemons and Sue.

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Wow, Lemons, that sounds awful. I actually went into convulsions and passed out with the contrast and they shot me with an epi pen. Most people with this can't handle the contrast. Yikes. I wouldn't try that again. They told me I went into anaphylactic shock and also told me to take some benadryl when I got home and I felt fine, a little dizzy for a few days but fine. But everyone is different so don't take those meds if you can't.

May I ask why they tested you for sarcoid? I was also tested a few years ago, but got a CT scan without the dye and a blood test. I had lung nodules and nodules all over my body. Where you having lung issues?

Hope you feel well soon.

Maiysa

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Hi,

I collaspsed after having CT contrast dye. I had a horrible allergic reaction within minutes I felt like I couldnt breathe and my face and neck were covered in huge fluid filled blisters. The stupid thing was It took me an hour to convince the nursing assistant on the ward that I was having a serious allergic reaction! My body temp shot up to 39 and I just felt like I was dying. By the time they called a dr the reaction was starting to wear off. From now on whenever I am having tests in hospital I carry allergy meds because next time they could kill me.

Thankfully the Dr realised that he should have been called immediately and there are massive warning stickers all over my medical notes. The strange thing is Ive had contrast dye prior to that and had no reaction.

My father also is allergic to contrast and he lost several layers of skin off his hands and feet after having it resulting in him having lost sensation on the palms of his hands and soles of his feet.

I think we probably have MCAD running in our family but in the UK it can be difficult to get drs to take this condition seriously. My dad can now only tolerate 2 different antibiotics as he is allergic to everything else, he cant even take ibuprofen as he goes temporarily blind for a few hours after taking it.

Rach

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Well, I made it through my CT scan. I had the usual reaction, but not as bad as last year. I told the tech how I react with my heart racing, and she said something about that happens because the contrast constricts the pulmonary vessels. Lemons, that may explain your bad shortness of breath.

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doozly, that is VERY interesting because after the test my urination increased significantly--like 20 times that day and 20 times the next...wonder if there's something to that--mast cell? Maiysa- my ACE levels were high during bloodwork, so they wanted to make sure i didn't have sarcoidosis. Interesting that you got dizzy, i have also been dizzy which is abnormal for me...just thought it was from the big wham. Sue, that is interesting, my tech told me that the vessels are opened by the dye lol!

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Oh, the ACE test. I remember that one. They kept doing the ACE test over and over with me because of lung nodules that ended up being a lung infection and I was also covered in nodules/erythema nodosum for months. I was actually diagnosed with Sarcoid for a while until Mayo figured it out the lung infection was from a fungal spore. I hope and pray that you have some type of answer soon. Please update me or us when you do find out. Hang in there. And so sorry to hear of your issues.

Maiysa

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Lemons, it is very possible I misunderstood what she said, and it could have been dilated!! LOL Apparently, whatever it does to the vessels causes my tachycardia.

Interesting y'all say that about the lungs. I just got diagnosed with two very small lung nodules last year that I was supposed to have followed up. I had some problems with the ordering doctor not letting me combine the CT scan of my lungs with my abdominal CT, so never followed up on the lung nodules. What test is ACE--what do the letters stand for?

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I had a terrible reaction also...they thought they were losing me. I just remember them saying, Stay with us and don't go to sleep. I was

told to not to / be cautious of have any radioactive dyes. They always have a a long talk before they give me anything now, and premedicate me before if needed.

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Lemons, I read your post on hospital just after being told I needed a ct with contrast - so a bit worried now.

Wonder whether anyone has used sedation first - even valium - just to take the edge off it?

Sorry you went through this but what would you suggest might help?

And did it show anything?

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Emma, not to worry. It just made me feel bad for awhile. If you think you need it then the benefits outweigh the risks. Just be prepared, because it is an uncomfortable test. And don't be afraid to let the tech know you have low bp and may need some time to recover. Mine gave me some Apple juice and it helped :) might not be a bad idea to have a driver with you if you can swing it. Also good news: they didn't find anything.

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Lemons, it is very possible I misunderstood what she said, and it could have been dilated!! LOL Apparently, whatever it does to the vessels causes my tachycardia.

Interesting y'all say that about the lungs. I just got diagnosed with two very small lung nodules last year that I was supposed to have followed up. I had some problems with the ordering doctor not letting me combine the CT scan of my lungs with my abdominal CT, so never followed up on the lung nodules. What test is ACE--what do the letters stand for?

They found a lung nodule in my lung as well when I was hospitalized last Dec. I had a repeat CT scan with contrast in Feb. It hadn't grown in that 2 mo span of time so I am scheduled for a follow up in a year. I had a lung CT 5 years ago and it wasn't there then. Interesting...

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Sue, ace stands for angiotensin converting enzyme. You may have heard of ace inhibitors before. Ace is believed to be an enzyme responsible for making the hormone angiotensin, that causes vasoconstriction

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I too, react to contrast dyes. Go bright red, skin burns like sunburn. Last time it happened I felt like **** all night afterwards but luckily they kept me in hospital overnight anyway -- they were monitoring my heart -- so I didn't go home and have to worry about it there. I just got to feel a lot of pain. I had told the doctor before he injected it that contrast dyes were a problem for me but he chose not to pay to much attention to me. Doctor knows best, in other words. Then I turned bright red before his eyes and told him it my skin felt as badly sunburned as it looked. That was before I was diagnosed with POTS. Now it's in my medical records that I react badly to contrast dyes along with a whole host of other things.

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