No CT scans for Graves patients?

[Belsize]

Recently i was turned away at the very last minute from a CT scan for a non-thyroid related issue. Because I have Graves disease.

I understand why the contrast dye might pose some risks for people with thyroid disease, but i would like to know the size of the excess risk. At the hospital, they told me that they dont have much information because 'Graves isnt a very common disease'. (!!!)

The thing is, NOT having the information from the CT could also provide a risk to my health. I want to be able to weigh up the benefits and risks of having versus not having the CT scan. Before I tunnel down in to PubMed, I wonder if anyone else has had a similar experience and done the research?

[PurpleNails Administrator]

Is your Graves under control?

It’s known that Iodine can affect thyroid function but it’s not always known if if will induce hypothyroidism or hyperthyroidism.

I would have thought If there was a concern an alternative contrast would have been used?

As unusual as Graves is I can’t believe someone with Graves has never needed a CT and ways to prevent issues or manage affects haven’t been dealt with before.

Usually Doctors are keen to proceed & downplay any concerns related to iodine / thyroid so it’s unusual to hear they have cancelled it.

[Belsize in reply to PurpleNails]

Thanks for responding. I am currently in remission and not taking any Carbimazole. I have also since wondered about an alternative non-Iodine contrast dye - but it all happened so fast that I didnt have time to think about the right questions to ask. Since posting, i have seen that others on the forum have had similar questions about CT scans. It seems that there isnt much information about the Graves-specific risk of relapse after exposure to iodine based contrast. Perhaps the radiologist was right - the number of Graves people with an intact thyroid is probably too small to allow a clear picture of risk.

[nightingale-56 in reply to PurpleNails]

PurpleNails and Belsize , I had a CT scan with Contrast and was very ill (projectile vomiting) for the rest of that day. I had, in the past, had a MRI scan without any problems. I am hypothyroid after a sub-total thyroidectomy for Graves.

[PurpleNails Administrator in reply to nightingale-56]

That’s sounds awful.

Did drs say about it? was the reaction related to having Graves?

Were you told if the need for contrast arose again, next time to arrange an alternative.

[nightingale-56 in reply to PurpleNails]

The Doctor dealing with the problem just patted me on the back and said 'Oh hard luck'. I will not be having any sort of X-ray or scan with Contrast again. In discussions about this problem in the past on this site, someone stated that they could just turn the Contrast up on the machines.

[PurpleNails Administrator in reply to nightingale-56]

How dismissive, I’d have been tempted to return that pat on back with one on their nose - full force.

I’d also read doctors view “iodine allergy” as a myth since it necessary for thyroid function.

They say it’s other substances in the mixture which causes a reaction.

[nightingale-56 in reply to PurpleNails]

Wish I had thought to do that! He was quite a nice Doctor though. Really wish I had known more about Iodine then.

[Belsize in reply to nightingale-56]

Oh this sounds very grim for you. I think its the lack of curiosity from many health care professionals that thyroid patients find so frustrating.

[birkie]

Hi Belsize❤️

All I can offer is my experience in my scan (my hospital gp called it an uptake scan I think thats the same as a contrast scan) I was diagnosed with hyperthyroidism in 2018 and put on those anti thyroid meds unfortunately I couldn't stomach them I have colitis and are lactose intolerant I just kept vomiting them bk, then went in to thyroid storm, eventually seeing an endocrinologist my hospital gp on the ward was quite alarmed I'd not been referred to one after my diagnosis, my bloods were not good very hyper but he still felt I needed an uptake scan to determine what kind of thyroid condition I had and what my thyroid was looking like, I had no reaction to the stuff they injected me with but were all different I suppose, but I did get the diagnosis of graves then full thyroidectomy as mine was thyrotoxicosis, it's down to the personal I suppose but I'm glad I got the scan with the help of the hospital gp as my surgery obviously didn't think I needed it and even when I saw the endo he said I didn't need it.. Soon changed his mind when he saw the results of the scan I needed a thyroidectomy as my thyroid was so toxic... 🤦‍♀️

[Belsize in reply to birkie]

I hope that you are feeling ok now Birkie. x