[beebello]

#1058663

Hi – I’m doing a lot of reading and research on my own. I want to be as educated about GD as possible. I was diagnosed in July 2011 and started taking beta blocker and Methimazole. I have really been feeling so much better! My T3 & T4 have improved and my endo cut back my meds a bit. TSH had not improved as of my last lab, but had more blood work done this morning so we’ll see… I have an appointment to see my endo next week and am working on a list of questions for him.

It’s really starting to sink in what is happening to me and my options to treat it. I’m concerned about RAI and the relationship to TED. I thought I’d ask the question here where real people living with GD might be able to help – Has anyone here done RAI and then had NO issue with TED or bulging eyes?

Thank you in advance for any input!

~Becky

[beebello]

#1169236

I should also mention that I have been seen by an opthamologist recommended by my endo & GP and at this time he sees no evidence Graves in my eyes. I will see him again in another month or two just to monitor. I’ve read that it can just appear and that’s what I’m worried about. I just found out that someone I’ve known for a while has GD and some time after RAI her eyes bulged. I know there is much success with RAI, but I’m hoping to hear some success stories where TED was not necessarily a result of RAI.

Thanks again

~Becky

[snelsen]

#1169237

Hi, I am glad you are feeling better with treatment. I imagine someone will answer your post who has had RAI with no incidence of TED afterward.
I took some time just now to look, but could not find, the latest guidelines for RAI which address this subject. In summary, it states that there is an higher risk of TED in some degree after RAI than after a thyroidectomy. IT also states that this might be alleviated or deceased by administering a steroid before the RAI. But I think this is now evidenced based information.
Of course this does not preclude people having RAI with no eye issues, or very mild symptoms. And I think the whole subject refers to the short period after RAI.
Kimberly had a good post and reference about this, but I tried all combinations of terms in the search engine, could not find it. So hope she sees this post.

Of note, TED can appear anytime after we have had Graves’. Even decades, as it did for me.
Shirley

[snelsen]

#1169238

I am assuming you know there are three treatment options. ATD’s, RAI and surgery. Most people make their choice based on their own personal thoughts and feelings for/against the options.
I think the right answer to you title question is, that RAI will not always lead to TED. Having said that, any of us can develop TED at any time because we have Graves’. That is over a lifetime.
Shirley

[beebello]

#1169239

Thank you Shirley for your response! I do know about the surgery, but, from what I’ve read, it doesn’t seem to be as popular in the US? Maybe I’m getting too ahead of myself trying to predict what’s going to happen and I really can’t control that. I’m becoming content with learning as much as I can and doing the best that I can with the input from my doctors. It is what it is.

I do feel comforted to see on this board that I’m not alone and that really does help.

Thanks again (:

Becky

[snelsen]

#1169240

Hi Becky, Hard to know all the variables that are associated with each choice. Lots of times, in all surgical and some medical treatments, the variable is geographic. Or an endo recommends one treatment over another, because where he trained, one was more predominant. He/she are familiar with it.
I think there are some things to consider when choosing each option. Specifically for surgery, which I chose, you need to be able to find a surgeon who does plenty of thyroidectomies, maybe 50 a year. I think that is the number we heard at the conference last year. For me, it seemed the fastest way to MOVE ON! So it was right for me. And for no reason at all, I was not excited about RAI.
And that tends to be in metropolitan areas or at academic institutions with major medical centers.

You sure have time to check it out, and it really does help to hear the experiences of others, and their thought processes toward that. Many, many of us have agonized over their choice. Once they made it, the big burden of decision was gone, and in almost every post I can think of reading, people were happy with their decision. Probably the biggest caveat I can think of, is a doctor who insists on one option, and does not present all three treatment options. The pros and cons are pretty much up to us
You can argue convincingly for or against any of them. IT’s all about you. The exceptions depend on access to good people, and on rare occasions, the surgical option is the one that must be the choice, usually for extenuating circumstances, which,, of course the patient needs to thoroughly understand.

I am a big proponent of 2nd, and even 3rd opinions. It is quite an experience, to hear a polar opposite view, or even a balanced one, on a choice you might like, but have been told NO by your endo.
Hope you get more responses.
Shirley

[Bobbi]

#1169241

The better question is probably does GRAVES always lead to some kind of Thyroid Eye Disease? And the answer is, most likely, "yes." According to an article written by a doctor that I read a few years ago in The Bridge, the newsletter of the American Thyroid Foundation, doctors were finding that we ALL had "some" eye changes associated with TED. Signs of the eye disease were found in autopsies; soft tissuing imaging like MRIs, ultra-sounds, etc. finds it in others of us with little or no sign of the disease. The vast majority of us do not develop significant symptoms, but if we were all examined closely enough, the article’s writer suggested it would be likely that symptoms of TED could be found.

People develop the eye disease before getting treated for hyperthyroidism; during treatment for hyperthyroidism; long after treatment for hyperthyroidism. Trying to control whether or not you get it by choosing one treatment option over another is not likely to be effective. Choose the treatment option that offers you the very best chance of eliminating your hyperthyroidism with minimal adverse effects for your health. That choice will be different for each of us. There are sound medical reasons why one person should choose/avoid some of our treatment options. But eliminating the possibility of getting the eye disease is not one of them.

[snelsen]

#1169242

Hi, just to clarify. THat was not the question Becky asked. I think my posts addressed her concerns and her questions. Here is one reference on the subject. I also encouraged her to check this out further, asking this question.
http://www.medscape.com/viewarticle/584576_4 It is from the journal THyroid.
The more recent studies, as well as this one, state that administering of steroids in conjunction or before RAI, reduce chances of any eye involvement. I think Kimberly has a more recent reference. This study was in 2008.

In my posts, I also addressed the relationship of Graves’ and TED. I am living proof of that, having developed TED decades after I initially had Graves’ diagnosis.
Shirley

[beebello]

#1169243

I really appreciate all the information I can get Bobbi & Shirley! I feel I’m getting a better grasp on what I’m dealing with. I read somewhere that RAI can actually make TED worse or bring it on stronger. There’s information out there that I’m just not sure exactly where it’s coming from – how valid it is. Especially when I get it online I really don’t know who’s putting it there. My doctor said to be careful about online info & I am. I ordered a couple books & like them, but they even have mixed reviews. I like this board because of the personal stories.

I’ve only seen my endo once – when I was diagnosed – and have an appointment coming up this week. I like him so far, but am curious to learn more about his philosophy on treatment. I know the route I’d like to take, but I also know I have to be safe about it. I’ve followed his instructions & feel like it’s under control. I’m thankful for that right now. I’m concentrating on staying calm & am looking into meditation because I know that will help me in the long run.

Thank you so much for your responses!!

~Becky

[Bobbi]

#1169244

There was a study about — I don’t know 12 years ago? — that observed temporary increased symptoms of TED with RAI in 16% of patients observed. Patients who did RAI while taking prednisone, however, had no temporary increase in symptoms. That study, apparently has not been completely validated by other studies, and if Kimberly were online, she could respond better about more recent studies’ results. (Kimberly is on vacation.)

The thing is, there are always new studies. If they are peer-reviewed and published in respected journals, the results are tentatively accepted as valid, unless new studies come along that either refute or substantiate them. The problem for us, though, is that typically these studies have a very small group of patients involved, so results are not necessarily universal. So, we have to accept a certain amount of uncertainty when it comes to making our decisions, and that is never a comfort.

What is known: TED occurs in people who have never had Graves; TED occurs in people long, long, long after they get treatment — whatever treatment — for their Graves. Shirley, for example, developed the eye disease decades after having her thyroid surgically removed, and surgery has not been associated with increased TED in the studies I’ve seen. Obviously, others develop the eye disease closer to treatment, which makes them then blame the treatment. It doesn’t make it true. And it doesn’t help anyone in your position, who is trying to evaluate what is their best treatment option.

[Kimberly]

#1169245

Hello – One of the early studies that highlighted the correlation between RAI and TED was Bartalena, et. al. from 1998. They found that about 15% of patients experienced a worsening of eye symptoms following RAI versus 4% for Anti-Thyroid Drugs. Of these patients whose symptoms got worse after RAI, about 2/3 eventually saw enough spontaneous improvement that they did not need medical treatment. The remaining 1/3 had symptoms that were serious enough to require further medical intervention. Patients who had RAI, but were treated with a course of steroids did not show a worsening of the eye disease. However, steroids come with their own risks and benefits, so this is a decision to be made in conjunction with your doctor.

Other more recent studies have yielded mixed results. A study in 2009 by Traisk, et. al. showed that 38.7% of patients who were treated with RAI experienced a worsening or new development of TED, versus 21.3% for the Anti-Thyroid Drug group. Yet another study concluded that there was no additional risk of worsening eye disease following RAI as long as the patient was treated aggressively with replacement hormone and NOT allowed to remain in a hypOthyroid state for too long.

There was some new guidance released this year on the treatment of hyperthyroidism by the American Association of Clinical Endocrinologists and the American Thyroid Association that does recognize an increased risk of eye involvement with RAI treatment.

The new guidelines are based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

Bottom line, not *every* patient who has RAI will experience a worsening of TED — and some patients who select ATDs or surgery can still end up with eye issues. However, the increased risk *is* something to be aware of when making a treatment decision.

[beebello]

#1169246

Thank you Kimberly! I really appreciate the added information!

I have an appointment with my endo this afternoon – wish me luck!! (:

~Becky

[DeaKai]

#1169247

Wow, I’m so glad you are all so well-learned in this arena. I’m hoping for surgery because of my high-risk eye problems since birth. I was suprised to learn my doctor didn’t order GD lab testing as I thought after he prescribed metham. ? (of which I had a severe allergic reaction to) in the meantime I’m so glad you are all on this sight with such great resources, thank you so much! I’m hoping for surgery.
D.K.

[beebello]

#1169248

I had a really good visit with my endo yesterday. My T3 and T4 are still *almost* normal, but not there yet, but considering in July they were both 5x over normal, they have come down A LOT in just 2 months. TSH hasn’t changed a bit ” title=”Sad” /> I’m feeling really good on 10mg of methimazole a day (I started on 30mg) so we are just going to stay with that for now. I also am taking a half of one beta blocker pill (25mg) a day and Vitamin D. It’s amazing to me how different I feel compared to before I was diagnosed – I had no idea how bad it was until I started feeling good – I’m sleeping better, I’m calmer, I don’t over-react to stressful situations and I’m not sweating & irritated by the heat anymore! Oh, and my hands don’t shake!!! yay!

I really feel at this point that my endo and I are on the same page. I’m very honest with him and all my doctors. I’m doing my homework and really felt accomplished at my appointment because I totally understood all the terminology – nothing he said surprised me. We are not going to rush any other treatment at this point since we’ve seen results with the meds. I even got the *OK* to start exercise.

As far as TED, my endo said to keep monitoring my eyes with my opthamologist – he’s sending all my labs to all my doctors. I told him I wish there was something I could do to prevent TED and he said I am – I don’t smoke! Now we’ll shall see what happens over time.

I was so scared and upset when I was first diagnosed, but doing research has really put my mind at ease. I’m still living my life…just a little differently. I don’t stress about it anymore.

All the info you all have posted in this tread really helped me in preparing for my appointment yesterday – thank you!!

~Becky

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