I got my confirmation letter today about my ct kidney scan appointment next week.It says CT kidney triple phase Both!
When I googled what that meant it mentioned iodine beng used as a contrast dye which as usual freaks me out.
Now that I’m confirmed with p.a is there any info I need to be telling them before this procedure and is there any thing I can say to avoid having the contrast, I just know I’ll have a bad reaction ,I do with anything and everything I have done.HELP lol.
Hi Thrones,
I know you were waiting for the appointment to come through and finally it has arrived. Sorry to hear you have bad reactions to medications, fillers and iodine which obviously can be quite worrisome.
You always have the option of not giving consent for the contrast but still having the scan. That is your ‘choice’ for a routine medical procedure. X
I swear I’m going doo wally lol I just noticed I asked about this previously,I’m def overdue my shot just did it there that’ll teach me sorry guys.
I’m not having it for sure I just need to reread things and come up with a good enough reason not to,that they’ll listen to.
I might give p.a a ring on Monday see if they can suggest anything but honestly if I had let them do these contrast dyes at every ct or mri I’ve had over last couple of years I’d be glowing in the dark by now lol.thanks all xx
Hi Thrones,
No need to apologise, you actually caught me out 😂. I usually look at similar threads to get a better understanding of situations.
Yes, ideally having contrast CT will give more detail. It is a great idea to ring Monday and discuss if there are other options available to you. X
I would discuss it at the hospital. They can get more detailed information with the contrast dye.
I dont know if they can use anything different if you've been l own to react to it.
Hope it goes okay . T c
Thrones
As others have said, contrast is used to enable specific images to be taken...and those views are often not obtainable without using contrast.
It’s sometimes possible to have alternative sorts of imaging done that doesn't require contrast...but they may not give the information your doctor needs.
Think I'd suggest contracting the doctor who requested the tests before you go to have them. You can discuss your concerns about potential reactions to the contrast and make an appropriate plan based on your medical needs. They could, for instance, suggest changing the images required or ways to deal with any of potential reaction to the contrast.
If you’re unable to contact your doctor, then it might be worth discussing your concerns directly with the imaging department, before your appointment.
It’s difficult isn't it. Whilst it is within your right to refuse any medical test or investigation, this might ultimately work to your detriment - so it depends on how essential your doctor thinks the test is, whether there’s another suitable (but perhaps not quite as good) alternative, and whether there’s an acceptable means of mitigating any potential risk.
So...discussion with the doctor who ordered the test may help you to make an informed decision...and perhaps reassure you about the right way forward, for you.
Good luck
Good advice as always Foggyme I will call radiology in the morning and have a discussion,because we have a history of stones,my brother has had lots of problems but I’ve no contact with him now so don't know all the details,I’m wondering if it’s a condition called Cystinuria that they are going to check for and I know they will check for tumours too so as you say it may be that they need to do contrast but I’ve previously read that this is not a necessity and is down to the radiologists personal preferences so I’ve always refused the contrast, even with the brain scan from head injury and they have always gone ahead.My last ct scan showed multiple calculi in left kidney and raised lymph nodes near the caecum and they focussed more on the lymph nodes ,I had a private colonoscopy done and biopsies and got the all clear I then saw a private haemotoligist,head of hospital here,and he redid all the tests and scans,no contrast again, and was satisfied with the findings but again stones were ignored.My Professor said right at the start to gp that he was concerned the stones hadn’t been properly investigated so I’m grateful that he’s systematically going through this stuff with me and we are treating or eliminating the health problems one by one so I’m making good progress but in every test I’ve refused contrast because my body would have been riddled with it by now lol.I think I had hoped that it would be a very clear “ no thank you I have p.a and can’t have contrast” a bit like nitrous oxide so I guess not lol.many thanks again x
I was in the ER once and they wanted to do a CT with contrast. I started crying as they began to prepare me for the CT because I was so upset as I have had previous reactions. (The doctor had not told me prior that it was going to be with dye) The technician doing the scan asked why I was so upset. I asked if she could use half the usual dye. (Seems like a 98# person should not need “standard” amount) She readily agreed without asking the doctor. It seems like the CT gave them the info they need. Since then I just refuse dye for CT’s and MRI scans. In my opinion, dye is often used by a radiologist to confirm their own readings of a scan and to decrease liability. I have told doctors I assume the liability of using no dye. It is often a stressful fight, but worth it for me.
Same here I wasn’t told it would be with contrast either whenever I’ve had any scans actuallly they just came over with the prep tray and I’ve refused it,had a nasty response my refusal last time and told technician I was gonna report him it felt as if he had threatened me so I informed the consultant. I just find it all very confrontational and I don’t like that when I’m already scared.x
Hi Thrones interesting question, I had an anaphylatic shock reaction, to MRI dye a couple of years ago, never been particularly allergic so hadn't expected a bad reaction. I don't know if PA or any other condition can raise the risk attached to MRI dye or if I was just sensitive to something in the dye but am interested in any insight on the subject.
Sorry to hear that onyx that’s such a huge fear with me that’s why I witter on about it,most of the usual antibiotics are on my no go list at the gps I have such bad reactions to them and so is aspirin and I just dread the idea of that foreign substance going in my body.I know im that one in a thousand who’ll react badly
I’ve decided to phone and cancel my scan this week I’m not feeling great still not totally over this virus from last week so it’s just the excuse I needed because I know I can’t go to hospital feeling like this.X
That’s a very wise decision to cancel if you have a virus. Wishing you better soon Thrones.
X
Many thanks Narwhal10.
I’m feeling a bit fragile still my muscles are still achy.
I actually put the time to good use I’ve recently moved house so yesterday I registered with a new gp practice,I was a bit hesitant because I wanted continuity of care but then realised actually that’s a bloody joke when I have never ever seen a gp at this practice,so anyway I’m glad I did because this new practice seems more patient orientated in as at least they are open so I’ll give things a week to settle down then make the dreaded appointment.you can actually ask for referrals via an Online form with these guys I’ve never seen that before,I’d really like to go to guys in London as they have a specialist kidney stone unit there and just once maybe the nhs will step up for me instead of me having to pay out all the time.anyway watch this space lol.thank you for the well wishes take care xx
This article is quite reasonable, I think. It does recognise the issue quite clearly.
Gadolinium contrast agents
Oh no Thrones, I didn't mean to put you off your scan, speak to your GP about the worries you have about the dye, medics must think a scan is needed, may be a scan without the dye would be better than no scan at all. Can understand why you are so worried though with bad reactions to common medicines
You’ve not put me off don’t worry I’d already made the decision last night my throats so sore and glands are all up so I can’t go anyway.I went to watch two of my grandchildren play football last week and I’ve not been well since ,it’s only a virus so I’m not thinking anything else but I can’t go to hospital still feeling like this.
Thank you for your concern though and I do think that p.a makes us more open to these things I catch everything going and I react badly to the simplest things,I darent put any kind of cream on my face now or it scalds my skin. really badly I have to be careful with shower gels can’t use underarm deodorants,I’ve tried everything over the years and it just continues,think I’m just allergic to life lol.take care x
Hope it all goes welli n the end, I'm sure if you explain how sensitive you are to many things how you feel about the dye wil be understood.
Feedback re advice to not self inject posted yesterday 
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