Rai question

[Fluffypip]

I'm just wondering about RAI (not relevant now but I'm doing research for future) when you have toxic nodules. Is it true that the radioactive solution just kills the nodules or is the whole thyroid destroyed? Does hypothyroidism always happen?

If you had no TED before is it safe in terms of eye issues?

[PurpleNails Administrator]

This is the leaflet hospital tends to hand out regarding RAI

btf-thyroid.org/treatment-o...

The radioactive iodine is taken up by any area of working thyroid and the cells nearby are damaged. Sometimes within weeks but full effect can take years. There is also 10% the first treatment is insufficient by 6 months at which stage doctors repeat the treatment.

Its highly likely function will be reduced to very low levels if not completely after several years. You will need replacement. Doctors view hypo as simpler to treat.

It says if you have active TED - RAI should not be used although sometimes steroid are given at same time.

Do you have confirmed TED?

Can be difficult to have TED diagnosis without Graves. Even when hyper.

I have a hyper nodule & an MRI confirms I have chronic (Not active TED) the specialist hid the MRI findings & discharged me saying I need no treatment for eyes & everything was fine. She’d previously been adamant I couldn’t have TED as I didn’t have antibodies.

Another point in leaflet - For some patients who are treated with radioactive iodine to reduce the size of a goitre, there is also a small risk that they may develop Graves’ disease.

So it possible the nodules are treated but you go on to develop Graves, & this could cause continued hyperthyroidism.

[Fluffypip in reply to PurpleNails]

Continued hyperthyroidism! So would they then surgically remove the thyroid too?? I'm also antibody negative though have a history of autoimmune issues. I do have small nodules, no eye problems i know of. So is mri the only way to check eyes? Did you have any symptoms?

[PurpleNails Administrator in reply to Fluffypip]

I think that’s exceptionally rare & only a recent addition to leaflet.

Graves can settle & go in remission but if medication isn’t a option you’d need repeated RAI or surgery.

TED is usually diagnosed by specialist with knowledgeable of symptoms & positive antibodies. MRI is used to look get a detailed view if for example there’s concerns regarding compression which can’t be examined in other ways.

Most doctors including specialists are happy to confirm your sight isn’t in immediate danger & then send you on your way.