Graves and PBC

[dollydaydreams]

has anyone with PBC had radioactive iodine for graves after their PBC diagnosis

[ninjagirlwebb]

I just had a recent discussion on thyroid issues with my endocrinologist & hepatologist. I am not on the iodine treatment, but I will share what I learned.

TSH levels can fluctuate on the spectrum => Hashimoto/hypothyrodism which blocks or slows thyroid activity to Graves/hyperactive which stimulates thyroid activity.

When we have thyroid nodules or a goiter that throws our TSH off, one can either have “hot” nodules or “cold” nodules. “Hot” nodules mean the nodules are producing TSH/thyroid producing hormones, & to limit too much TSH, the treatment is radioactive iodine. It specifically targets the nodules to stop it from producing TSH.

“Cold” nodules mean the nodules are not doing anything. If the TSH is low, it means the actual thyroid function is off & the treatment is to address the thyroid itself. Doctor said treatment is Methimazole.

In either case, your doctor will monitor you while you are on the meds. Usually after 1-2 years, when your thyroid is back to normal, doctor will take you off the meds. It could even be sooner than 1 year, depends on each patient’s response to the meds.

Hepatologist says thyroid issues are very common in pbc patients & we should treat it as needed. He said it was not a major cause of concern.

You should ask your doctor/doctors questions specific to your case to put your mind at ease.

Hope this helps.

[dollydaydreams in reply to ninjagirlwebb]

yes i get all this and have been on carbimazole for almost 2 years, but they mentioned the iodine to me last week but stated they did not know if it would cause any problems with the liver with me having PBC so i thought i would ask in a few places if anyone had had this treatment since diagnosis and it looks like it is a no so far.

[ninjagirlwebb in reply to dollydaydreams]

That is a question for your hepatologist. He can provide his insights on that. I think it is probably okay because my endocrinologist knows I have pbc & didn’t say that the radioactive iodine would be an issue. Either way, they should monitor your liver.

My aunt does not have pbc but she had Graves disease. Her doctor took her goiter out so she just takes synthroid instead of the radioactive iodine.