Bobbi
I stick around here on this bulletin board, not because I still consider myself sick, but to give those of you who are in the throes of battle with this nasty disease a bit of hope. No, to give you LOTS of hope. I know how ill you feel, or how downright scared you are with the eye disease. I've been there. I was dreadfully ill. But, I am the norm. I am like thousands of other people who, through one treatment or another, got well again. Our treatments work to give us back our health. Please keep that thought firmly in your minds while you are casting about for what treatment option to choose. They are ALL better than remaining hyperthyroid.

Thank you. It does give us LOTS of hope. I know it did me when I was super sick a month ago. And it still does now when I'm starting to feel better. Please continue sharing your experience Bobbi.


On a positive note, even though I'm afraid of RAI and lean right now towards surgery as a second option if the medication does not work for me, one thing that does attract me about RAI is that I've read that there has been a small % of people who have become euthyroid after it without having to take pills. It is a small % but I like that about it. One never knows if one would be in that small %, right?

Caro

Hello - This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach in this thread:

(Note on links: if you click directly on the following link, you will need to use your browser's “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.gdatf.org/forum/topic/42509/ [gdatf.org]

As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.

Take care – and keep us posted!

To Bobbi:


First I apologize. I had you confused with another facillator who is on Methimazole for years. The only comment I thought I really wanted to convey to you was when you stated I was being SOLEY emotional with my decision (left side of brain versus right side). I even added LOL. I wantd to clarify. Enough about that, I know you are knowledgable and I appreciate your input and I said I did.

Alexis you are amazing and you really do help alot (as do everyone who esponds) because you are/have been in my shoes, especially with the doctors saying “you must do this, don't do that…” I know they have the education, but we do research as well. I just want to keep all options that are best for FOR ME as you said. Thanks so much for your response and I am truly glad you are recovering well.

Thanks Kimberly. I will check out the site. You are truly insiteful, and generous with your kind responses and never judgmental. You state the facts and you always give links, research to back up your responses. This is truly helpful and I really appreciate you.

If I left anyone out..please do not take offense. At work and can only jump on periodically.

Here is to good health and me seeking a second opinion from docs…

Just a short comment.
I was euthyroid for over 20 years after my thyroidectomy.
I think we have to remember, that when we were our
“normal” selves, there were probably small adjustments made in the loop between the pituitary and the thyroid gland, made all the time, and all of our lives. Lots of variables govern it, probably some of them are not know. Certainly the passage of time (ie, aging!) is one of them.

So, I don't think there are probably many valid conclusions comparing a euthyroid state, ie, no need for supplemental hormone, can be reached.

Plus, the current standard of care is, I understand, to obliterate the thyroid gland, so the dose can be regulated by docs more easily to our benefit.
The old standard of care was to leave a “little bit” of thyroid gland, with the goal of preventing us from being HYPER, but able to give thyroid hormone pills when we are HYPO.
My two cents.
Shirley

Kimberly
Hello - This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach in this thread:

(Note on links: if you click directly on the following link, you will need to use your browser's “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.gdatf.org/forum/topic/42509/ [gdatf.org]

As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.

Take care – and keep us posted!

Kimberly, I have left you a message in the link you recommended

I was diagnosed with graves back in 1997. In 2005 after it going hyper for a third time, I reluctantly went on PTU (first tried Tapazole but was allergic) I as severely hyper with every possible symptom both physical and mental. I stayed on PTU for 4 years. At the end of that time I was staying normal for at least 2 years and dr decided to take me off after PTU had a warning on it. I had antibodies rechecked and miraculously they were almost zero. Dr said chance of remission was high. That was October 2010. I've been in remission since.

My endo was awesome about not pushing things, and he believed in stress management, healthy living etc. he believed remission was possible. (well known and endo for MANY years) he recently retired and the new Endos I've followed up suck. They push RAI and tell me not to get my hopes up for long term remission. I refuse to believe it can't be possible.

Don't give up hope and don't let anyone push you into something your not ready for. You have to do what's best for you, wether it be surgery or RAI but it should be your decision and you should be comfortable with it

Sorry you are being pushed into making a decision that you are not ready to make.
My partner also had the same sort of pressure after 12 months on PTU, but she was firm in her belief she could kick this and her and the Endo “agreed to disagree” on that point. She continued on PTU, 5 yrs+ now, and when her TSH returned this year the Endo admitted that “they lost the bet on that one”, she is progressing fine, feels great, has no symptoms and is looking forward to remission.
Individuals that are going to have an adverse liver reaction to ATD's generally see this within 6 weeks of starting med's otherwise most seem to have no adverse effects from the ATD's, even with long term use.
In “my opinion” GD is a “wake up call” that requires one to pay more attention to their health and if one does not change their ways they will have ongoing issues irrespective of what treatment path is taken.
I hope you can find a resolution that is appropriate to your needs.

I have been thinking about this topic – long-term use of the ATDs – a lot this week. Yes, in other countries they will allow their patients to use them long term. And long-term generally means really a lot of years. I've seen reports of people being on the ATDs as long as 18 years…in Japan, I think. Harpy's partner has been on PTU for five years now? So, what are we talking about then? Long years, without remissions, on drugs that are known to be hard on the liver. Contrast this to long years spent on replacement hormone which is a substance naturally used by our bodies….i.e. no liver problems. Add to this, that as we age, our livers become less efficient at processing out toxins (the by-products of the metabolism of drugs like our ATDs) and side effects start to increase.

I do understand the concept of every person making their own decisions. But I don't think we should criticize our doctors when they suggest an option that they believe they have evidence has fewer adverse consequences in the long term.

All three treatment options carry their own set of potential risks and rewards. With regards to ATD's the risks are as you say potential liver issues, but these are most likely to manifest in the first 3 months of treatment and are more often associated with high dose treatment and MMi is a lower risk than PTU.
While the reward is potential remission with a fully functioning thyroid gland and no need for ongoing medication/hormone supplementation to maintain normal body functions, and if they should have a relapse they still have all three options open to them.
With regards to doctors & criticism, like anyone with a firm position on anything, they should be able to produce a raft of data to refute the opposing view, failure to do this can only indicate a lack of knowledge or time, both of which in “my opinion” are an indication of poor medical care with a focus on the welfare of the system rather than that of the patient.
A good doctor will have the confidence of their patient and will take the time to discuss, inform, reassure & support them through this difficult time in their healing journey and the need for internet support/discussion groups would fade away into history.
So to Darcy43 and all GD patients I hope you find a healing path appropriate to your needs, there are rarely any easy choices in life usually they lie somewhere between hard & not so hard. Everyone will apply different weightings to priorities in their life and this will then govern why they choose A over B while others will go the other way, both are appropriate with respect to the individual, no matter what ensure it is your choice and you are prepared to take ownership & responsibility for it.

thanks Harpy

I am taking my time and not being forced into a “one size fits all” decision. Although we are all made of flesh, bone and blood, we are different. What works for one may not work for another. All three treatments do have risk and I need to just chose the lesser of the evils if you will. Getting will is not something that I think is evil btw, but it just depends on the person and what they can live with.

I am glad there are so many success stories on all treatments, whether long term ATD, RAI and TT. I will continue to pray, research and communicate with my endo and most importantly STAY CALM and wait for my next two lab results. Whether we hit a homerun or strike out eventually we have to swing that bat, so I know I will have to make a decision soon.

I just want to make a fully informed one.

Thanks for all the encouraging responses EVERYONE.