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CT contrast dye idea freaking me out

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Wolfcub, Oct 3, 2018.

  1. Wolfcub

    Wolfcub Senior Member

    SW UK
    A neurologist has referred me for a CT scan. I haven't got the appointment date yet.
    I've almost zero experience with diagnostics, except an ultrasound once -never needed them before and have never had a CT.
    So I didn't ask about injected dye during my (rather hurried) neurologist appt. I never thought of it as I was so naive I thought only MRIs used contrast.
    I have no knowledge of whether I will get an allergic reaction or not

    It's freaking me out now as I read that many (though not all) CTs require contrast. And knowing my luck with stuff -mine will.

    It's weird. The possible side effects sound like a list of symptoms I am already feeling in a remitting/relapsing fashion and have been for over 6 months. But I get other things too.
    I am grateful at the moment for some times of remission of those symptoms, and I have learned how to cope. Now the last thing I want is something to make them WAY worse.

    So anyone here had contrast dye? What did it do to you? Good bad or neutral?

    I haven't yet got a ME/CFS diagnosis, so it would be hard to convince doctors that I am wary of the contrast dye maybe for good reason....
  2. lafarfelue

    lafarfelue Senior Member

  3. Wolfcub

    Wolfcub Senior Member

    SW UK
    Thank you very much @lafarfelue I put "contrast dye" in the search box and couldn't find these threads. Though I vaguely do recall it being discussed here a little while back. I couldn't trace where I'd read about it.
  4. AdamS

    AdamS Senior Member

    Hopefully this will put your mind at rest a bit. I’ve both a CT with contrast and MRI with contrast. Both were a little uncomfortable but nothing more, the contrast I had during the CT scan made me feel like I needed to pee a bit and that was the only side effect thankfully. Obviously everyone’s body reacts differently and I am probably classed as a mild/moderate ME/CFS case so perhaps my body is a little more resilient than those with more severe illness.
  5. Wolfcub

    Wolfcub Senior Member

    SW UK
    Thanks @AdamS I wouldn't mnd the "think I've peed myself" feeling. Just don't want to feel more unwell afterwards. Plus I have to drive myself 25 miles back home and no-one in that hospital is going to talk me out of that.
    I am usually very resilient, stoical, can bear things....etc But since this illness there have been so many variables and sudden things I cannot tolerate any more. Some of them are unexpected.
    I never was good with pharmaceuticals/drugs either.
    AdamS likes this.
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Hi, I've had brain MRI with contrast and was anxious like yourself as I read scare stories online, which although some could be trolls, there was some truth in the danger of some contrast agents used in MRI scanning for people with existing disease or those who have repeat scans. In imaging they can use many different types of contrast agents, and sometimes tracers with radioactivity to make different organ sites 'glow' when reviewing the scan. One well known contrast agent in terms of controversy, is called gadolinium. There are various brands (manufacturers) whose products have differing safety records also but are used for the same imaging site, e.g. the brain. What I did was find the exact make of the drug they were going to give me for an MRI brain scan with IV contrast, by asking the radiologist. Then I found a hospital who used the least dangerous contrast agent, as I looked up the drugs safety record before my scan and compared the best of three options. This was because with MRI at least, there are cases of people with existing kidney disease dying, because the contrast agent has some strange metal material compounds that can get stuck in people's organ system like the kidneys in tiny balls. Not having that issue, I went ahead with it and I wasn't allergic to it either. See here:

    The contrast agent in a CT scan like MRI differs depending on what area of the body you're looking at (e.g. blood, bone etc) and is usually less exotic than an MRI and uses something like Iodine for high blood flow areas (e.g. 3D CT scan of the heart) which if you're not allergic to it, simply makes it feel like you've peed yourself for a short while (goes all warm 'down there') because we have a network of blood vessels that dilate so it feels 'warm'. It sounds scary but it's not, as it only lasts a short while.

    Personally I find the best way to control my worry over any concerns over a possible drug reaction (allergy) is to tell the hospital staff long in advance your medical history (known allergies or past hypersensitivities), and if you can either meet them before the scan, or get someone to represent you at the hospital and get them to ask questions for you, or just talk on the phone....all of this can all help you feel less stressed because you go prepared not consciously worried something will go wrong.

    As long as the scan using contrast is performed in a hospital setting with full backup you're totally safe in my opinion. If you're having it done in the middle of nowhere, e.g. in a clinic 20 miles from an ER with winding roads with no medical back up in the clinic either, e.g. no MD's in the building or you haven't hired a paramedic to get there, then I'd be more cautious and check out the facility first. E.g. are there trained doctors around somewhere else in the building?, what medical equipment do they have (ECG, Oxygen etc), and what are they trained in? So the only thing I'd say is remember radiologists aren't doctors and specialists scanning centres rarely employ an MD either. This is important in a small clinic building, as If you get sick, they aren't medically trained so make sure you know this and check out the area on Google Earth and search where the nearest ER is, if it's not in a hospital or the hospital doesn't have one. Having the knowledge will make you less subconsciously worried and gain confidence and with more confidence in yourself and the medical staff performing your scan, you should experience less anxiety and tension.

    Although 5-12% of patients can have a 'mild' reaction to contrast agents [1] massive, fatal outcome level reactions only occur in around 1 in every 170,000 doses given. [2]. To put that in context....

    If a hypothetical hospital performed 3 angiogram procedures a day, 365 days a year, 1.1 person would have a heart attack per year from the procedure (1 in 1000), probably as they had blocked up arteries and the produce dislodged some plaque and hey presto it's in your circulation and forms a clot. Yet using the same number of people above and equal frequency using contrast agents, just 1 person in 170 years, would die of an allergic reaction (1 in 170,000) in this hypothetical hospital example of course, not a large scale hospital with far more than 1,000 patients per year visiting.

    So yes it's possible, but extremely unlikely especially if you have no history of prior anaphylaxis, brittle asthma, allergies, don't drop your BP over past medications, food allergies, chemicals pets etc. No history of seizures, abnormal cardiac arrhythmia, existing muscle disorder etc.

    Good luck and I'm sure it'll go well and you'll say it was a breeze. A CT scanner isn't claustrophobic either which is another bonus.

    Source: American College of Radiology. ACR manual on contrast media: version 8, 2012. Manual/FullManual.pdf. Accessed Accessed November 21, 2012.

    Source: Adverse reactions to ionic and nonionic contrast media. A report from the Japanese Committee on the Safety of Contrast Media. Radiology. 1990;175 (3):621–628. Katayama H, Yamaguchi K, Kozuka T, Takashima T, Seez P, Matsuura K.

    I hope it goes well and you get the answers you need.
    Wolfcub likes this.
  7. Gingergrrl

    Gingergrrl Senior Member

    @Wolfcub I might have missed it but what type of CT scan will you be having? I had to have several high resolution CT scans of the lungs (from 2015-2017) and this particular scan is done without contrast dye. I would find out from your doctor what type of scan and if it does require dye, what type of dye.

    I am allergic to iodine based contrast dyes, and most likely all dyes that would be used in this type of procedure, b/c of my history with MCAS and prior allergic reactions to dyes. If you are concerned about allergic or anaphylactic risk, I would discuss pre-meds with the doctor (IV Benadryl is the most common one in the US, I am not sure about the UK).
    Wolfcub and Sundancer like this.
  8. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I havent heard of contrast dyes really being an issue for us and many of us get scans done. I myself though I have LOTS of sensitivities with the ME and have MCS too with it, I got no reaction at all to the contrast.
    Wolfcub and Binkie4 like this.
  9. Wolfcub

    Wolfcub Senior Member

    SW UK
    @Research 1st

    Thank you so much for such a good detailed reply. I appreciate the time and work you put in to write that.

    I have no history of allergies to anything. But do have history of severe intolerance to some drugs. Intolerances that just made me feel very ill, not anaphylactic. So much so, that I had to discontinue treatments in the past, and took prescribed herbal medicines from a qualified hebalist instead.

    But over the last 6 months have had unpredictable changes in my responses to some things even as benign as vitamin B! And herbal remedies that used to help -suddenly having no effect etc. Unusual changes. Some things even as simple as alcohol or coffee can have some very bad effects on me sometimes and they never did before.

    Things I could do before and feel no negative effects from, now I have become sensitive to. Everything has changed and it feels very strange.

    As if my whole system registers "poison" much much quicker than it used to and is in a state of absolute zero tolerance with anything which could be even mildly toxic.

    The hospital I will be sent to for the CT is a major hospital 25 miles away, so yes they have doctors there and an ER.

    But it's not "dying" I'm worried about. Dying of anaphylaxis would be no fun but at least it would be over quickly.
    I don't think I'm even worried about an allergic reaction so much...
    It's more a big exacerbation of symptoms I would then have to live with which concerns me, even though I have been told side effects are not common.

    If that happened then I'm on my own. The doctors already think I'm a mystery!
    I am just about managing as I am, and certainly no worse than I was months ago -even slightly easier I think, though do get recurrences of symptoms though now on a milder scale (or am I just getting used to them??) Certainly no worse on average.

    Reading the article you posted a link to (which was kind of you to search out and post):

    then there are a few concerns I personally have. One is I have not been classed as a "high risk" patient. No one knows what's wrong with me and I slip through every test 100% healthy! So high risk is nowhere on my records.
    I have not been in close enough communication with doctors to share with them every nuance of my condition as the months have gone by.
    The neurologist wasn't interested in my full symptom profile. He seemed to just want to focus on "his bit"; that was -reflexes and simple neuro tests. So he doesn't have a clue what has been happening either.

    Two is....I'm not even classed as an ME/CFS patient (yet) So no-one would think to wonder if I can tolerate procedures.

    Three is the "immunological response" to gadolinium which presumably would set up a bit of a cytokine fuss. Now that is what I feel I have already been dealing with over the last 6 months.

    It will be a brain/head/neck scan so I am guessing either gadolinium or iodine will be used.

    Fourth concern is that although the doctor says my blood results for thyroid are "fine" I think that's based on blood TSH alone. I don't think T3 and T4 and/or antibodies were run. So no-one knows so far if injecting me with iodine is a great idea or not!

    I would have to walk away with the consequences if I had exacerbated symptoms from the procedure, and live with them.

    I think I have come to a decision right now.
    When the appointment letter arrives I will speak to the department and talk to someone about all these other issues I have and my concerns. Meeting them ahead of the appointment wouldn't be possible in our health system, but it should be possible to speak to someone on the phone.
    I don't care if they think I'm a nuisance.
    I know I AM a nuisance! Believe me! LOL
    Gingergrrl likes this.

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