RAI and TED

[MMcK]

I have a couple of questions.  First, I have had Graves disease for the last 3 1/2 years, and have been treated successfully with propylthiouracil (PTU).  At first my case was hard to diagnose, because my labs were pretty normal.  I had just been pretty sick and fatigued with both eyes swollen, and I thought I had something like mononucleosis.  After about 3 weeks, I went to my internist, who misdiagnosed it as a virus I needed to wait out. I mentioned I noticed my left eye looked a little bigger than normal, but he couldn't see it.  After 2 more weeks I went back, and then he could see it since the swelling was pretty much gone.  He thought it was an eye problem, and sent me to an eye doctor, who sent me to an endocrinologist.  She is not a Grave's specialist, but seems pretty knowledgeable about it.  After several tests, (MRI for eyes, further labs, uptake for Grave's, etc.) it was diagnosed as subclinical Grave's disease with TED.  I was put on a low dose of PTU, and just waited to see what would happen with the TED.  My left eye got a little bit worse (not much), and my right eye is still not affected.  After about a year with stable labs, my endo decided to have me quit taking PTU and see if my thyroid would remain balanced by itself.  It did for about 5-6 months, then became unbalanced worse than before.  My endo wanted me to have an RAI, but I talked her into letting me do another round of PTU to try again. I had to go back on PTU at twice the previous dose to get stable again. My labs have now been stable for almost a year, and she wants to take me off PTU again in a couple of months and see what happens.  If it becomes unstable, she recommends an RAI since I have a blood clotting issue, (which is also an auto immune problem: Anti-cardio lipid antibody, IgM) so a Total Thyroidectomy ( or any surgery) would be a little risky.  (I take one whole aspirin a day to treat that issue.)
  Question #1:  Many patients say their doctors recommended TT instead of RAI because of the elevated chance of aggravating their existing TED.  I asked my endocrinologist, and she said that is old information; in the last year or so, there are new reports that say RAI does not affect TED at all.  Is this true?  I want to know what the most up-to-date truth is, because once TED becomes worse, there is no going back. (& eye surgery is risky for me)  
  Question #2:  What are the risks of just staying on PTU indefinitely since it seems to work, and is a less severe treatment?
  Question #3:  What % of RAI's are not always effective, and sometimes need to be re-done, or have a TT done
later?
  Question #4:   I read an article that said they are seeing a greater % of urinary tract and reproductive organ cancers much later, since that is where the radioactive iodine seems to settle after RAI treatment.  Is this true?  

[tm514]

The decompression was a little more involved, and I had to stay overnight in the hospital.  It was done under general anesthesia.   The swelling and recovery weren't too bad, though.  I was driving within a few days.

The eyelid retraction surgery was done under local and "twilight" anesthesia.  Weird, but cool, too!  At one point I sort of became conscious of my surgeon on the telephone during my operation!  But, I didn't really feel a thing, and the recovery from the anesthesia was minimal.  I was on my way home within 2 hours of my surgery.  The swelling from that round was quite impressive, but I was always able to see - it took well over 3 weeks for the swelling to really become unnoticeable.

With all things Graves, patience was the key.  I often thought I got Graves Eye Disease so I could learn a little patience since I was never lucky enough to have children.  I am sure glad I am on the "fixed" side.  I just hope everything stays that way.

[MMcK]

I noticed you had a bilateral orbital decompression surgery, with eyelid retraction surgery later.  Which surgery is worse (or more dangerous), the TT or the orbital decompression & eyelid surgery?

[MMcK]

Thanks for the info!  I have a Dr appointment today, and I will ask her where she got the info that says RAI doesn't affect TED.  I have several other questions, too.  I feel stuck because it seems I have big risks no matter which route I take...RAI or TT.  So frustrating!!!  
                       I really appreciate your input!

[stella5349]

It is not old information on RAI effecting TED. Ask her to reveil this information.

If you remain on PTU's indefinately it could effect certain organs.

I don't know much about the UTI stuff - sorry - I have had no problem and RAI was done 5 yrs ago on me for Grave's (I had no TED symptoms)

It is pretty much praticed now that when administrating RAI they no longer give the patient a guessed amount to destroy partial gland. A complete distruction is now done (as much as they think will kill off the entire gland) and you remain on thyroid meds for life.

I think my gland b/c of thyroid storming - the RAI done did not kill off the entire gland. I believe mine works to some degree at times and that sometimes throws me into a bit hyper mode once in a while.


I have listened to how I feel and have the flexability to up my dosages or lessen them if needed to adjust better throughout the day.

[MMcK]

Thanks so much for sharing your info.  I have tried to post my questions to Dr. Lupo, but it is so hard to get to him.  I will keep tryng.  I really appreciate hearing from people like you who have "been there".  You are ahead of me in this journey, and any help along the way is a blessing.

[tm514]

I can tell you what my doctor told me - I have Graves and Graves Eye Disease.  My doctor offered RAI or TT, but suggested TT because sometimes RAI makes eye problems worse, and it can't be "taken back" as you say.  Worse eye problems was not something I was looking forward to, as I as already having enough issues, so I chose TT.  I believe Dr. Lupo over on the Doctor forum has said much the same thing recently, if you are able to get a post over there, it might be worth the time to ask the questions you ask above.

I do know when I was originally started on anti-thyroid meds, I was told there are risks of liver disease and also problems with white blood cells, which fight infection, which is why they don't like to treat with them for more than 12-18 months.  I believe the side effects are relatively rare, so maybe those risks are acceptable to you vs. the other issues you have.

I'm sorry, I don't have any idea on what the answers are to your last two questions, but if you can get a post in for Dr. Lupo, he might be able to provide more info.

Good luck.