Here I go again.... Graves back

[jbiel123]

I was so hopeful to have my thryoid removed and be over with this...

on 3/5/10- my TSH was <.01
on 3/16/10- my TSH is now <.023

and taking HALF of Levoxyl 75mcg-

Went to see the Endo that did my RAI 2/09- she lowered my dose to 50mcg- but called on Friday to tell me to stop taking my Levoxyl all together! Apparently my Graves is back. I tried to take the thyroid removal approach with her at my visit on 3/16- but she is totally against it- saying that I do NOT have much thyroid tissue left since I already had one RAI treatment- and she did not think going thru such a risky surgery is a good idea- and that a lower dose of RAI should knock it out. UGH!!!!!!!!!!!! I am very discouraged and upset!

Does anyone know of people who have had thyroidectomy after RAI???

[Andros]

I was so hopeful to have my thryoid removed and be over with this...

on 3/5/10- my TSH was <.01
on 3/16/10- my TSH is now <.023

and taking HALF of Levoxyl 75mcg-

Went to see the Endo that did my RAI 2/09- she lowered my dose to 50mcg- but called on Friday to tell me to stop taking my Levoxyl all together! Apparently my Graves is back. I tried to take the thyroid removal approach with her at my visit on 3/16- but she is totally against it- saying that I do NOT have much thyroid tissue left since I already had one RAI treatment- and she did not think going thru such a risky surgery is a good idea- and that a lower dose of RAI should knock it out. UGH!!!!!!!!!!!! I am very discouraged and upset!

Does anyone know of people who have had thyroidectomy after RAI???

I personally do not know anyone that did that. But,as you know, I had 3 RAI. It just would not die. LOL!

Your doctor may be right though. Perhaps another professional opinion?

{{{{jbiel123}}}} I know you are upset; I do hear you!

[khop]

Hey jbiel,

I have been going through the same exact thing you are!

I have had Graves, and 2 RAIs and will be having a full thyroidectomy in May. I had the same experience with my endo. She absolutely DID NOT want me to go see the head and neck surgeon. Basically, I told her I just wanted to TALK to him to get information....and very reluctantly she agreed and gave me the referral.

I went and saw a head and neck surgeon on March 15th and had SUCH an opposite experience than I did with the endo. He was awesome and listened to me and said I am a perfect candidate. He said that since I have exhausted all options and know the ins and outs of Graves Disease, he trusts my choice to get my thyroid removed and he told his MA to put me on the surgery schedule for May (so I could get my levels a little more balanced with aggressive medicine before surgery...helps avoid complications).

I encourage you to tell your endo you want to see a surgeon...just to consult and ask questions. They can't make you do RAI again, and you can talk to a surgeon about the complications that might arise with doing the surgery after RAI...my surgeon said it complicates things "a little" but he does 4-5 surgeries a week and a little scar tissue is nothing they can't work around.

Hope this helps! I know how discouraged you feel :winking0014: Just remember that it is YOUR CHOICE to get RAI again, you don't have to.

Kelly

[Lovlkn]

A surgeon's job is to do surgery.

If you need a referral ask for one to see a surgeon, if no referral is needed make an appointment with a surgeon.

I could almost guarantee you a surgeon will remove your thyroid if you have a diagnosis of Graves disease and if you have failed RAI attempts it's pretty much a guarantee. Bring as many records as you can and you'll probably be able to schedule a date on your way out.

[Andros]

Hey jbiel,

I have been going through the same exact thing you are!

I have had Graves, and 2 RAIs and will be having a full thyroidectomy in May. I had the same experience with my endo. She absolutely DID NOT want me to go see the head and neck surgeon. Basically, I told her I just wanted to TALK to him to get information....and very reluctantly she agreed and gave me the referral.

I went and saw a head and neck surgeon on March 15th and had SUCH an opposite experience than I did with the endo. He was awesome and listened to me and said I am a perfect candidate. He said that since I have exhausted all options and know the ins and outs of Graves Disease, he trusts my choice to get my thyroid removed and he told his MA to put me on the surgery schedule for May (so I could get my levels a little more balanced with aggressive medicine before surgery...helps avoid complications).

I encourage you to tell your endo you want to see a surgeon...just to consult and ask questions. They can't make you do RAI again, and you can talk to a surgeon about the complications that might arise with doing the surgery after RAI...my surgeon said it complicates things "a little" but he does 4-5 surgeries a week and a little scar tissue is nothing they can't work around.

Hope this helps! I know how discouraged you feel :winking0014: Just remember that it is YOUR CHOICE to get RAI again, you don't have to.

Kelly

Good for you, Kelly!! And knowing what I know now and did not back then, I would be suspicious of cancer for I don't believe solid nodules really if at all uptake the radioactive material and that may be why the RAI does not work.

You (and I) will know more once you have your surgery. I will keep you in my thoughts and prayers for this and will you please let us know? Stay here and hang out w/ us!

[khop]

Andros-

I will definitely keep everyone updated. I am currently waiting on May surgery schedules to come out so the nurse can schedule me.

I didn't realize they did that so late! However, I am ready whenever they will take me :) I am so encouraged and like I said...I will post the date and process leading up to the surgery as I figure out what it is.

jbeil...GET A REFERRAL!!! (Or just make the appt if you don't need a referral) I hope you will get the same kind of encouragement I did!!!

[Andros]

Andros-

I will definitely keep everyone updated. I am currently waiting on May surgery schedules to come out so the nurse can schedule me.

I didn't realize they did that so late! However, I am ready whenever they will take me :) I am so encouraged and like I said...I will post the date and process leading up to the surgery as I figure out what it is.

jbeil...GET A REFERRAL!!! (Or just make the appt if you don't need a referral) I hope you will get the same kind of encouragement I did!!!

Very excellent and I hope you can at least maintain a holding pattern in the interim.

We are here for you...................anytime.