Hi every one! I’m going for a CT on Monday - CLL Support

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Hi every one! I’m going for a CT on Monday

Paulibiris
Paulibiris

I’m allergic to iv dye , Told My Hematologists because he is the one that is sending me for a CT scan, The hematologist is saying that I can do it with no contrast but it is not going to be the same and he won’t be able to see it very good..

41 Replies

Do you know what ingredient in the contrast dye you are allergic to? I am allergic to iodine but I have found that have had allergic reactions to the contrast but on other occasions not?

Paulibiris
Paulibiris in reply to fapumpkin

No, all I know is that it makes me hard to breathe

fapumpkin
fapumpkin in reply to Paulibiris

Within seconds of the First time I had the iv dye go in my eyes started itching, throat started swelling up - it was then put on my medical file, which went onto cause all sorts of issues, including whether I could go on the present medical trial. I am allergic to fish, shellfish, get both hay fever and asthma.

I have gone onto have contrast dye since with no reactions but each time the clinic have been aware of a past issue.

I am allergic to fish and shellfish too, same anaphylactic reaction, also same reaction to Aloe Vera. I am ok with the dyes - but the first time I had it done, no-one mentioned allergies - but that wasn't the hospital I am treated for CLL.

When I went with my mother to her cardiology scan they asked if she had any allergies, she cheerfully said know - I told them she is allergic to shell fish, so they decided not to use the contrast dye.

cllady01
cllady01Volunteer in reply to Paulibiris

That sounds Anaphactic and it is important that they know your reaction.

fapumpkin
fapumpkin in reply to fapumpkin

I found this on radiopedia

“An increased risk for an adverse contrast reaction can be identified and assessed by the application of institutional forms and pre-exam interviews:

history of a previous reaction to iodinated contrast media

details of the previous reaction should be obtained and alternatives (e.g. non-contrasted study, ultrasound, MRI) may be considered

nearly 200x increased risk 8

hyperthyroidism: ~3.5x increased risk

family history of hypersensitivity reaction to iodinated contrast media: ~14x increased risk

allergic diseases including asthma

not a contraindication, although these patients have 6-10x more risk of developing severe contrast reactions 1,

remember that the risk of severe reactions is small (0.04% to 0.0004% of the patients receiving a non-ionic and low-osmolality iodinated contrast)

previous history of multiple allergies

it is not a contraindication - a more detailed history should be obtained

keep in mind that shellfish allergy and skin irritation/"allergy" to topical iodine antiseptic is not associated with an increased risk of contrast media adverse reactions

anxiety

studies have shown patients with high anxiety have a somewhat elevated risk of 'non-vagal' adverse reactions”

Myths and misconceptions

myth 1: a previous hypersensitivity reaction to other iodine-containing compounds increases the risk of a contrast media reaction

it is a misconception that iodine is the antigenic component

allergies to elemental iodine do not exist, it is due to allergy to other chemical moieties

myth 2: a contrast media reaction will not be seen at first exposure in a patient

it is erroneous to assume that patients who are naive to contrast media cannot have a reaction

even anaphylaxis has been seen in patients with no documented history of contrast agent use

myth 3: concurrent interleukin-2 use increases risk of contrast media reaction

there is no sound evidence for this

Prophylaxis

Prophylaxis with antihistamines and change of the iodinated contrast material used can both reduce the occurrence of a recurrent hypersensitivity reaction”

Jm954
Jm954Administrator

Having seen CT scans with and without contrast, I'm afraid that what your doctor has said is true. That doesn't mean it's not any good but it does make the detail and measurements harder. It's a bit like looking at a complicated out of focus picture.I think fapumpkin 's suggestion of knowing exactly what you're allergic to and discussing it with the radiographer is a good one.

Jackie

Paulibiris
Paulibiris in reply to Jm954

Tks

cllady01
cllady01Volunteer in reply to Jm954

Would an MRI be better in that situation?

Jm954
Jm954Administrator in reply to cllady01

Probably but I honestly don’t know. The difficulty may be the time they take and access to a timely appointment.

They were talking about a PET scan for me, but went with the CT scan when he realised the previous one hadn't been done with dye, because they could get a cannula in.

I get reactions now too. Flu like symptoms 5-6 hours later...so after a lifetime of no CT issues, I don't do the drink anymore. Hematologist was ok with it. 🙏

Paulibiris
Paulibiris in reply to GMa27

Tks

SofiaDeo
SofiaDeo in reply to GMa27

IDK if you were using the stuff that's preserved and containing other flavorings and chemicals that they can give out ahead of time or not. When I was scheduled for a CT last summer, I read the ingredients on the bottle & informed them I could not use that preparation, it had some things in it I react to. They had me come a few hours early the day of the scan to give me something that got mixed up that day on site. I didn't react to that. However, my issues are more GI upset/diarrhea not true allergic reaction of hives, breathing problems, etc.

GMa27
GMa27 in reply to SofiaDeo

I was given the drink to put in my frig. I was to drink half at one time and half another. Can't remember exact directions. I had choice of banana or berry.

cllady01
cllady01Volunteer in reply to GMa27

The contrast dye is done through IV when I have a CT scan and they control the volume of contrast--at least that is what they tell me--they do a smaller amount.

GMa27
GMa27 in reply to cllady01

My PET scans were the only ones with iv dye. All my CT scans with contrast were drinks. Very confused.

cllady01
cllady01Volunteer in reply to GMa27

Here is an explanation link. It appears the drink gives more visibility to organs, blood vessels and I think the IV has the dye---both are contrasts. I just know the kidneys can be effected --but from the link below, I am now confused also as to which is which as far as the kidneys are concerned. So, thanks a lot for confusing me😀 Too much to keep up with isn't it.

imaginis.com/ct-scan/inform...

Drinking lots of water is most important following the scan. I do know that much.

SofiaDeo
SofiaDeo in reply to cllady01

Yes, and I didn't mention I was given something to drink PLUS an IV med. At least, that's how I remember it.....

cllady01
cllady01Volunteer in reply to GMa27

GMa27, here is a good description of and and explanation of use CT scan liquids and IVs----relating the usage and content of each to the specific need for a scan.

healthline.com/health/abdom...

GMa27
GMa27 in reply to cllady01

So helpful! Thanx

JigFettler
JigFettlerVolunteer

Hmmm... I tried to have a "no dye" CT. (UK) as Jm954 said - the images are not as good, and I was declined. I am not allergic - just averse to stuff going in to my veins.

As Jm945 also said - knowing what you are allergic to is important. However that could be a challenge unless you know exactly what you reacted to previously, and exactly what you reaction was. Allergic to is a little different to anaphylactic to. They are of course linked.

I had FCR - and reacted badly to the Retux first dose. I had the rest (5) of the infusions with piriton and steroids and all was well.

There is Ultra Sound! Depends on what the CT is for.

Lastly CT does carry a radiation dose, and should be used judiciously.

Tks

I was also told I am allergic to the dye contrast for CT scans, because about twelve hours after each scan, I would get very flushed cheeks. The flushing would last a few days. So, I have to take premeds - usually dexamethasone or prednisone and an antihistamine starting the day before the scan.

So, the last scan I had, the radiologist refused to do the scan with the dye for fear of a severe reaction, so I had it done without the dye. Well, twelve hours later, I had very red cheeks. That was without the dye! It leads me to believe that the flushing was caused by the premeds and not by the dye itself.

My doctor said that the scan without the dye would still give her the information she was looking for.

Cindy

Paulibiris
Paulibiris in reply to Jackpot

Tks

I have multiple allergies so when I was first diagnosed the consultant ordered a PET/CT scan to give a clear picture without the need for contrast. I had no problems.

Paulibiris
Paulibiris in reply to Ghounds

Tks

cllady01
cllady01Volunteer

When I have a CT scan from my hematologist, I get a drink when I go in--I choose the murky water taste rather than a flavored. The dye is inserted through an IV after they get me situated.

When I see the nurse, I always tell her that I am concerned about the dye because it can effect the kidneys. She ALWAYS says they are reducing my intake of dye. It is important for you to drink water for the rest of the day to help flush out the kidneys.

But, that said, if your reaction was Anaphalactic, I'd be concerned. I'd ask for an MRI if that is possible.

cllady01
cllady01Volunteer

Sorry, I know that my question is not on target to this post. I have replied to that concern.

My question is related to your "Confused" post of 17 days ago:

You had gone to a Specialist who said you do not have CLL and he was doing further blood testing. Out of curiosity have you gotten a clear diagnosis from your CLL specialist?

I hope you will begin to ask questions of your Drs. and ask for any and all test reports to have for your records. You can then have backup to remember some of the conversations and answers you get from your Drs.

It has been a learning experience for my with a chronic condition to be a partner with my Drs. and to let them know I am interested by asking questions--even if the question is "What does that mean?" --And, another think I have learned is that some Drs. are not so communicative as their RNs are. RNs. have training in relating to others, their concentration very much on the patient where as the Drs. are often looking at the disease. Not all of them, but many.

Paulibiris
Paulibiris in reply to cllady01

I did had some other test done.. and yes is CLL , My Hematologist is the one that order the CT scan because I’m having a lot of stomach and back pain

Paulibiris
Paulibiris in reply to cllady01

Yes! My Doctor doesn’t comunícate, he is always in a hurry , I lost weight plus the pain

Paulibiris
Paulibiris in reply to cllady01

Tks

I got hives about 20 minutes after getting contrast dye for CT, Diatrizoate Meglumine. I was driving home and took some antihistamines that I always carry. Those stopped the hives progression. After phoning the doctor about it they consider it an allergic reaction, made a No Contrast Dye note in my chart. My second CT was done without that dye and apparently provided the images they wanted.

In 2012 and 2014 I remember drinking the chosen banana flavor for the CT scans. When I scheduled the upcoming scan two days ago, I was surprised (in a good way) that all I need to do two hours prior to the scan is drink 32 ounces of water. Is this something new?

I had both CT scan & PET scan recently & they only did a contrast for the last few minutes of the CT scan & I didn't have any problems or reactions to what they put in. A bit surprised that whatever they put in only takes a few seconds to get around the body & as I say it was only for about 5mins or so of the total time I was in there which was around 20 to 30 mins, noisy though even though they gave me ear plugs & ear mufflers over them. Noise from the different frequencies they use. Told to drink a lot afterwards to flush the dye out.

With the PET scan they put in a radioactive dye put into me about an hour before I went in & the actual scan seemed a lot quicker to me.

Had an MRI a few years ago for a prostate & in total it was about 40mins & again they only put the dye in for the last 10 mins or so.

Pooldude05
Pooldude05 in reply to alexmcg48

Hi Alex I have had three pet scans ,that is radioactive sugar that they use for the pet scans ,I used to joke the techs asking them if I was going to start glowing 😀😀

Hello Paulibiris

You received the standard reply as to why they want to do contrast dye. I have always thought their might be a connection between the nuclear stress test that I under went 6 months before I was diagnosed with CLL. I was quite capable of doing treadmill stress test, instead of nuclear option. What is really bad is that I had an angiogram because the stress test was not conclusive, I was fine. As far as CT scan I had later, I decided it did not make any difference I already had blood cancer. I am not a doctor but question how contrast dye is going to make things more clear in checking lymph node and spleen size. Blessings.

SofiaDeo
SofiaDeo in reply to Big_Dee

With Pauli's stomach & back pain, I am thinking they want to check things other than lymph nodes & spleen. Sometimes a good doc will "add on" a test/rule out things, instead of sending a patient to yet another specialist just to get a test done. Like my GP is going to coordinate with my onc to have my HDL/LDL levels run intermittently during my blood draws for my CLL, so I don't have to have an additional blood draw at a different time & place just for him.

Hi, I had a bad reaction in the past (iodine), so now I'm told to take Benadryl, Pepcid, prednisone, and the barium sulfate drink on a prescribed schedule the day of the scan; haven't had any more problems. Sorry this is too late to help you tomorrow, but maybe ask your doctor for next time?

I am allergic to CT dye as well. It makes my blood pressure soar!! I remember having a CT with dye then going to another doctor appt. She took my blood pressure three times and looked at me weird and said her machine must be broken!! Doctors scoff at me. But it is the truth and I don't care what they think.

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