Mixed messages

[purple64]

Endo says if I have RAI or thyroidectomy the antibodies will probably attack the eyes. Eye hospital says it's not a foregone conclusion that this will happen sounds to me that it's all a bit hit and miss. Think I will try and stay on Carbimazole as long as possible.

[bantam12]

Can happen but no way of knowing for sure. I had surgery and RAI and haven't had any eye problems, yet my sister who has only ever been hypo, no surgery or RAI had severe TED.

You could still get eye problems staying on Carb.

[purple64 in reply to bantam12]

Thanks for that. It all sounds like a bit of luck whichever one you choose. Will see what happens when the time comes.

[jimh111]

Can't see how this would make it more likely eyes would be attacked. Antibodies are not hungry wolves looking for food. I'd seek out expert advice. I.e. Not this endo.

[bantam12 in reply to jimh111]

It is well known that RAI can cause TED to either start or if already present to worsen, I was given 3 months of steroids when I had RAI to prevent any eye problems.

[jimh111 in reply to bantam12]

You're right that steroids are needed to mitigate any effects of RAI. As far as I know thyroidectomy does not have any harmful effects on TED. I would tend to avoid RAI if I could, purely on the basis of annectdotal reports of bad effects of RAI. I'd have a thyroidectomy if hyperthyroidism couldn't be controlled with drugs. If I had TED I would seek out the best advice from TED specialists as you need good treatment early on.

[Clutter in reply to jimh111]

Jimh111,

Removing the target thyroid can cause Graves to attack other organs, usually the eyes. Thyroidectomy is less likely to trigger TED than RAI. My sister's TED got worse after RAI. She was advised to have RAI to protect her eyes!

[jimh111 in reply to Clutter]

I'm aware of the link with RAI although the mechanism isn't understood. Perhaps due to TSH shooting up when not enough hormone is given after RAI (or thyroidectomy?). I'll have little Internet access for a while so will drop out for now.

[Clutter]

Purple64,

If you are comfortable taking Carbimazole there's no reason why you shouldn't continue taking it indefinitely.

ncbi.nlm.nih.gov/pubmed/286...

[shaws Administrator]

He sounds very blunt and would frighten the life out of someone who is looking to get help/advice. I think he could have stated it more kindly and reassure you.

[Valarian]

Is this the same endo who appeared quite keen for you to have RAI a few weeks back Purple64 ? (just been smiling again at your 'leprechauns' comment :).

I doesn't look as though you've been on carbi for all that long, and it seems a bit early to be discussing RAI seriously, although it's pretty unusual; to come across an endo who is so off-putting .

I'm with you though - provided my levels can be kept (more or less) stable on Carbimazole, I think I'd prefer to stick with it for a while even if I don'r achieve remission. There is no way back from RAI.

[purple64 in reply to Valarian]

It is one and the same endo 😂. The more I think about it the more I want to stay on Carbimazole. See what happens when I go back in June as she thought my GP should monitor my levels 😏. It's difficult when you are piggy in the middle.