[Anonymous]

#1050027

Hi my fellow sufferers, I have not been out on the bulletin board for some time, think I try and forget I have Graves Disease although we all know that is not easy.

My question is for those of you who have had RAI treatment, or may know the answer to this, I had RAI at the end of May and my Endo put me back on PTU’s real soon after, he gave me beta blockers too, but I just took them for the first week after RAI, but I am still on 6 PTU’s a day – 300mg, is this normal 2 months after RAI?

Thanks, look forward to receiving your feedback.

[Anonymous]

#1148314

Hi there!!

My treatment was similar to yours!! One month of PTU prior to the RAI, and then two days later I was back on PTU for the next two months. Treatment varies from patient to patient and from doctor to doctor. That I am baffled about!! At least it worked nicely for me. No, I was on PTU to keep the hyper symptoms in check, which I was thankful for. I read some patients were on the fast lane and visited the nuclear medicine right away after their diagnosis, no prior preparation. Maybe it might help if you ask your endo why you are following this kind of treatment while the others are doing things differently… Hope it is helpful

[Anonymous]

#1148315

Dear TJ,

I also took PTU after RAI. It took some of the edge off the hyper phase post RAI. However, it made the later plunge into hypo much worse. Be sure to take note of any change in how you feel and request a bloodtest promptly if you notice hypo changes. I didn’t know any better and waited too long.

This bb should help you a lot! Welcome.

Elisa

[Anonymous]

#1148316

I have only been diagnosed with Graves Eye Disease for a few months
so still have some basic questions! I’m taking PTU and am wondering
if the goal is to get off it and get the radiation or thyroid removal?
Or should I just be patient, take PTU for as long as possible? I of
course just want to “hurry this up”. Once off PTU do I face having my
eyes reacting any more than they do now? I know that there is no such
thing as a timetable with this disease, but I can’t help wondering if
the goal is to get off PTU or not?

[Anonymous]

#1148317

Well, my goal was to eventually get off ptu and go into remission. I don’t
have any eye involvement so I’m not sure about how it is going to go for you.
I had been on ptu for 2 years, and except for a bobble over a weekend, have
been off it for a couple of months. I go in again in Sept for another blood draw
to see how I’m doing.

Jean C

[Anonymous]

#1148318

The thing about PTU is that it has side effects. And one of the
side effects is liver damage. I was on PTU. It even had me go from
hyper to below hypo. Then my doctor took me off of it for one month
to see if I was in remission. No such luck. So I figured I needed to have
the RAI done. I did on friday. I am just glad not to worry about
the side effects anymore nor hoping I don’t miss my heart medication.
I am still on the heart medication. but no PTU anymore.

It is much harder to control over activity than underactivity. so I opted for
the radiation. I was tired of feeling sick.

Annette Marie

[Anonymous]

#1148319

I was on PTU for 1.5 years, went in rfemission for 4 months and now I’m hypo and taking synthroid, Everyone is different, The choice has to be your’s. Read all you can and decide what you think is best.

[Anonymous]

#1148320

I can tell you my experiences with PTU as I was diagnosed three years ago, went on PTU for two years with the “hopes” of getting my levels in order and going off PTU completely. Unfortunately after two years my levels were being sustained in a normal range, but, only while taking PTU. I think from my experience I learned the value of having an ENDO who monitors your levels (thru blood tests) on a monthly basis and who will adjust your PTU accordingly. I never had any liver damage, however, I did go to a low white blood count as a result of being on PTU for too long. This happened three weeks before I chose to have my thyroid removed which I did do three weeks ago and now I feel awesome. My advice is to try the PTU and if you are not successful take care of it immediately with surgery. I haven’t felt this good in three years! Good luck to you.

[Anonymous]

#1148321

I know someone (my first Graves contact here in my area) who took PTU for ONE year and has been in remission for TEN years and is still. BUT he has had problems with his eyes and required two surgeries. The last time I saw him his eyes look ‘starry’ and he said it was frustrating. I feel for him. As one poster here said, everyone is different. In my case, I hope I will be in remission. I hope things go well for you.

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