Graves Disease Atrial Fibrillation and Radioactive Iodine...

[KevJenn]

Hello

I was diagnosed with Graves Disease in 2017. At the same time I was diagnosed with Atrial Fibrillation. I was started on methazole and my T4 and T3 levels dropped very quickly. They were at the time of diagnosis my numbers were 4 to 5 times normal. I was VERY hyperthyroid. Antibodies confirmed it was Graves disease. They gave me cardio version for the afib and I went a year without problems. My blood levels T4 and T3 would be a lot of times mid range but sometimes go hypo and sometimes hyper but..my TSH never moved above the minimal level 0.1. I mean in two years TSH hasn't moved. Now we are at 2 years later from diagnosis and my endo wants me to strongly consider Radioactive iodine. He says that the bouncing T4 and T3 levels are causing my heart rhythm to be quite irrigated. I had two afib episodes two weeks ago and I was in hyperthyroid blood levels both times. I told him being hypo is no walk in the park either so I would be trading one set of problems for another. Although I feel people who get better tend to not hang around forums anymore I will ask the question. Have any of you had Graves or been hyperthyroidism and had radioactive iodine treatment and were glad you opted for it? Or are you more in the bad mistake..should have taken your chances remaining hyperthyroid?

Appreciate your input and time folks.

Kevin

[Comraich]

I had very similar issues to you and had radioactive iodine in about 2004. To be totally honest I have been absolutely 100% since. The alternative for me was a thyroidectomy - which just freaked me out too much a) it’s an inexact operation and b) the thought of having my throat cut!! So in my experience I would say yes but discuss all angles with your Consultant. Oh and you have to stay away from your loved ones for 7 days and pregnant women for about two months.

[KevJenn in reply to Comraich]

Thank you very much for taking through time to respond. I really appreciate it. The heart stuff is why I am at my wits end..

Kevin

[Greekchick]

Hi Kevin,

I had a TT 5 months ago for Graves’ disease and multinodular toxic goiter. You can see my history if you click on my name.

I thought I would provide you with some information that may help you decide what to do. The choice between RAI and surgery is not an easy one. You will find people on this forum who have both good and bad experiences with each. I am not a doctor and would not impose my opinion on anyone.

The research to date suggests that Graves patients do better long term with surgery compared to RAI. The reasons are not exact, but likely relate to the time of adjustment to meds after the procedure. Also, I don’t know how old you are but younger men tend to do better with RAI than older men and women. Also, the research indicates that Graves is more likely to reoccur after RAI than with surgery, and can attack the eyes and skin (more rare than eyes).

With your heart issues, you may not be a good candidate for surgery, so the discussion would be moot. However, even with RAI, you might eventually need surgery to remove the thyroid tissue. You may need more than one course of RAI, whereas surgery is usually a one time procedure. Also, ask your doctor about your risk for thyroid storm given your heart condition - if you have blood pressure issues as well this is also a potential concern with either RAI or surgery for Graves patients.

A skilled thyroid surgeon does not do “inexact” work - and should have an audited error rate of less than 1%. The scar is placed in a wrinkle on your neck and becomes invisible within about 6-12 months. Normally, they do 5-10 procedures a week. Anyone not fitting the description above is not a surgeon you would want to touch you.

So - there is no right answer - it is really a personal decision made in consultation with your physician. You asked if you should stay hyperthyroid - if you are on Tapazole and still have hyper episodes - you are not being controlled. I can tell you that being hypo is definitely not great - but with the right hormone combination you will feel much better and should not remain hypo once your meds are properly adjusted. In your situation with AFib, it would seem you don’t have much choice since the Tapazole isn’t working for you. You are not in remission if your blood work still shows you are hyperthyroid. Graves antibodies stay with you all your life - they don’t go away with either RAI or surgery, but they should normally be at very low levels after the procedures.

I hope this info is of help to you, and I wish you all the best. My brother had 3 cardio versions and one ablation - so I know exactly what you are going though and it’s not easy. All good thoughts your way today.