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Avatar universal

Surgery of Radiation???PLEASE HELP!!

I'm pretty new to all of this. I was diagnosed with graves disease/hyperthyriod  5 years ago and haven't really had a bad "episode" in about 3 years. Now it's back and bad. My Dr. put me back on PTU, and said that I could only be on this drug for a year and a half, and then after that it is either radiation of surgery. There is my problem I don't know which to do. I have two small children 2 years old and 3 years old,, so I really don't want to have the radiation and have to be away from them for so long, and I don't know how long that recovery is for the surgery. I just need to find out what will be best for me and my family.Does anyone have any advise
8 Responses
158939 tn?1274915197
Okay - by far no Graves expert (I've put a "shout out" to GravesLady - hope she chimes in soon) but I have been through the surgery and the radiation.

Surgery:  puts you down for about 3-5 days.  Not that bad of a surgery (I've had six or seven others and this was about a 2 on a scale of 1-10).  Downside is that no surgery, no matter how skilled the surgeon, can remove all thyroid tissue.  It's wrapped around too many nerves, vascular structures, etc.  I had both of my surgeries (I had half out each time) on Thursdays and was back to work the following Mondays.

RAI (radioactive iodine):  puts you "off limits" to others for about 5 days (my sister accomplished this by spending time in a hotel room).  Radiation doesn't typically "kill off" all the thyroid tissue (there are many on this forum who have had a recurrence years after the RAI) and it doesn't remove any of it.

There are a lot of good sites on the internet about RAI (Google "I-131 therapy") and thyroid surgery.

Hope this helps a bit.

Utahmomma
papillary carcinoma '03
RAI '06
213044 tn?1236527460
I am not speaking from experience, but I have been reading about this stuff a lot.

Most Grave's patients end up taking a small dose of RAI (radiation therapy) to try to shrink their thyroid. The idea is to kill a small part of it, rather than the whole thing.

Surgery is usually reserved for people who have signs of thyroid cancer. Those patients almost always recieve RAI after surgery to kill any cancer cells that may have escaped or been left behind.

Surgery is also used for patients with goiters or nodules that are causing a problem.

If you have RAI, and it is a small dose, the isolation time is less than a week. But, you have to be off your meds for six weeks prior to RAI, I believe. Then it is a waiting game to see how long it takes for the thyroid to be affected.

Eventually you will be put on Synthroid or a similar drug. Then it is a matter of finding the correct dose and adjusting it from time to time.

RAI carries a risk for Grave's patients as it may bring on TED, causing problems with your eyes.

Surgery is attractive in as much as you do not have to go off your meds first, but it has many risks that must be weighed. There is the risk of a thyroid storm, which may cause death.

It is not an easy choice.

The suppression meds you are on are hard on your liver, and will eventually damage it. That is why it is a temporary fix.

Hopefully someone with more experience can offer you advice. They may even point out errors in what I have said. I would hope so.

Best of luck to you.

176557 tn?1222890311
I was diagnosed with Graves and opted for total thyroidectomy after a little over a year on Methimazole.  I was never totally comfortable with the RAI idea, and once my endo explained there is some evidence that RAI worsens Graves Eye Disease (which I already had a pretty good case of), it made me much more comfortable with my decision to go the surgery route.  If you have any eye problems related to Graves, please ask your doctor about the impact RAI has.  The other thought I had about surgery was, since Graves is an auto-immune disease and antibodies were attacking my Thyroid, it made sense to me to remove the thing the antibodies were going after.

I didn't have to have RAI - that is only for those who have surgery to remove malignancy.

I wish you well in making the best decision for you.  The good news is that you sound like you have a little time before you have to.
Avatar universal
TM- what have you do to help your Graves eye diease symptoms? Has the total thyroidectomy helped? I am still on methimzole, but my eyes get worse with travel and stress. (my job comes with both) I am thinking its time for surgery- has it helped with your eyes?
332168 tn?1201026915
Well I have had both the radiation and now the surgery. As for being away from your children, I was only separated from my family for 48hrs. It was a nice little break! But then again I do not have small children in the home. The radiation is supposed inactivate the thyroid to decrease your thyroid levels. The object is not to Kill it as I was informed to decrease it's size as I was having compression symptoms. It's been 3 yrs and they were not able to decrease the size of my thyroid it had grown to 4-5 times it's normal size and was choking the daylights out of me.. I had the TT last week and am still awaiting the pathology on the mass. Keeping my fingers crossed for normal tissue. If I had to do this all over again I would not have waited. I was afraid to have surgery so I thought having the radiation would decrease the mass enough. I was wrong. It is your decision and you have to do what is best for YOU and your family. I wish you the best of luck with your decision..  Take care
Avatar universal
I know I am a bit late with this; I chose  none of the surgery or rai and tapizol was bad for me too. I chose a diet instead and did better on that. I have the grave's opthymyopathy(hope I spelled that right)or graves eye disease. As long as I keep the stress down and stay on the diet I am tons better but its not an easy diet.
291645 tn?1445338570
Hello Pat,what is the diet you are following? My husband is facing surgery or RAI in the future, and with his health issues they will probaly do the RAI. He is already loosing more of his sight. He is chair bond (might say) and spends his life sitting in front of the TV. Thank you.
Avatar universal
I had graves/hyper/goiter. I hit a thyroid storm before the RAI. I did the RAI, but still ended up hitting a second thyroid storm, so surgery was immediately done.I was dxd with Thyroid eye disease, so I deal with that. I ended up being in hospital for a total of about 2 weeks because of the thyroid storms. so either way I was away from my 1yr old.

This was 16yrs ago so don't remember much, other than I survived and am doing well. I do take my medication daily.
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