[Hannah]

#1017930

Hello,

I need some advice.

I was diagnosed Graves’ when I was 17, was then taking Tapazole 5mg daily. I also have the eye proptosis (TED, Thyroid opthamology) which is ~ 20 mm for both. I’m now in my early 20s.

Last year I wanted more advice with controlling my thyroid so my GP sent me to another endo. The new Endo told me that it’s not recommended to take Tapazole for more than a year and that I needed to stop taking Tapazole as it can lead to liver and bone marrow problems. So with his supervision, I stopped taking meds to see how my Thryoid was doing.

A few months ago, going to my first endo, I told him that I stopped taking Tapazole and he said that my blood levels were fine, I was in remission and that I no longer needed to see him. Hurrah.
Then I went to see my Other endo to see if he would say the same. He said that I needed to take action quickly. RAI or Surgery, I told him I wanted to double check the blood work and think about it.

I went back to see my endo this week. He said that I needed to have RAI and give him an answer within the next week.
I’m not confident about RAI. I’ve read that peoples’ TED worsens with RAI.
I asked my endo about it and he said that surgery was not an option for me as my thyroid is small.

After asking my questions he told me that RAI would be about 80% successful in ablating my thyroid. With steriods, I would have 50% chance in any further eye problems.
He also mentioned something about radiation (??? I may have heard wrong) if the eyes were to be affected.

My question is, is it dangerous for someone like me to be on Tapazole for the rest of my life? I’m a young female student.
Also, with existing eye proptosis, I’m already self conscious with my appearance, I fear that RAI may worsen my eye problems. Not only with the obvious appearance, but fear of further visual problems.

What should I do? Is RAI a safe option for someone like me?

[Kimberly]

#1061684

Hi Hannah – First, keep in mind that patients who come out of remission can choose any one of the three available treatment options to control their hyperthyroidism: Anti-Thyroid Drugs, Surgery, or RAI.

With Anti-Thyroid Drugs, we are seeing more docs who are supporting longer-term use of ATDs in patients who are able to maintain stable levels on a low dose – as long as they can avoid liver and WBC issues. (There is some anecdotal evidence that testing antibodies prior to withdrawing the drugs — and that weaning off the drugs slowly — may have some benefit.) Keep in mind that the worst of the side effects with ATDs generally occurs within the first 90 days of starting or re-starting the meds.

Unfortunately, no one gets a “free pass” with the eye disease, even if treated with ATDs or surgery. However, there are several studies out there that indicate that a higher percentage of patients who are treated with RAI seem to have a developing or worsening of eye issues versus patients who are treated with surgery or ATDs. One study concluded that there was no additional risk of worsening eye disease following RAI as long as the patient was NOT allowed to remain in a hypOthyroid state for too long – but most of the studies I’ve seen do indicate that a higher percentage of RAI patients have eye issues.

In one study that looked at the use of steroids with RAI, the steroid use prevented eye complications in 100% of the patients. Of course, steroids come with their own side effects, so this is not a decision to be taken lightly.

The “radiation” treatment that you heard about is probably radiotherapy, which is sometimes used to treat thyroid eye disease. One doctor who presented at our conference last year was not a big fan of this treatment, which is generally delivered over the course of several visits in conjunction with a course of steroids.

Did your doctor give a reason why you had to give him an answer within a week? This is a *huge* decision for you, and one that you need to be comfortable with!

[Hannah]

#1061685

Every visit with the Dr, he wants me to get something (RAI or surgery) done to "control" the thyroid problem.
My Dr emphasized that Tapazole is not favourable for long term therapy. He said the side effects of liver failure, and bone marrow damage. Also he didn’t want me to be "in a situation where you’re cornered" and would rather have me do something now when I have options.

I wonder if it’s because he works with cancer/research? (perhaps my condition is something that might be seen as something that could be controlled easily???)

If RAI is most likely to worsen my TED, it’s making me steer away from that option — which is the only option my dr is giving me.

However, you mentioned that steroids with RAI prevents the eye problem 100% — sounds good to me?
What are the risks/side effects of steroids?

Also.. you mentioned that after RAI, my eye problem MIGHT be fine if I don’t remain HYPO.
(from reading these posts, most people seem to become hypo after RAI/SURGERY)
What is the chances of becoming hypo after treatment (RAI/Surgery) ? — or How long does it take to figure out the correct dosage of meds to NOT be hypo?

[Bobbi]

#1061686

Hi, Hannah:

Weighing the pros and cons of various treatment options is never easy. Everything comes with potential side effects. Speaking generally, though, being hyperthyroid is the worst option we have; our treatment options are all safer than that. So keep that positive thought in mind as you are trying to decide what to do.

Some endos, with all of their experience with patients, may have seen enough problems with the antithyroid drugs like Tapazole, that they prefer to have their patients remove their thyroids and go on replacement hormone. Replacement hormone IS thyroid hormone: the "side effect" issues have to do with getting too much or too little, but replacement hormone doesn’t cause the type of side effects that can happen with the antithyroid drugs. So, these endos consider it safer. There was an endo at one of the conferences who talked about the horror of having a patient develop one of the major bad side effects of the drug (which happens VERY rarely). This particular endo truly wanted his patients to avoid long-term use of those drugs.

That said, there is a lot of literature that suggests that long term use of the drugs may be appropriate for patients who tolerate those drugs well. In Europe for example, it is a lot more common to see long-term use of drugs like TApazole. And some endos in this country are willing to continue prescribing them for patients, again provided they seem to be working well and that their patients are tolerating the drug.

Back to TED. TED has a very defined disease curve. We get it (develop the hot phase) and we experience a period of time with fluctuating eye symptoms — double visions, bulging, etc. Then things stop getting worse for a while, and start to get better (however slightly). Then we stabilize completely at some level (cold phase). For some of us there can be very little obvious impairment. Others of us need surgical intervention to repair our appearance. But once the cold phase hits, the disease is, typically, done. If you have active (hot) thyroid eye disease, it is possible that you will see a worsening of your eye conditions after RAI. It is also possible that you will not. The frustrating thing about medical research is that one study often contradicts a previous one, and then we don’t know which one to believe. Some studies have suggested that being hypo (having depressed levels of thyroid hormone) causes a worsening of the eye disease. Some studies have suggested that RAI can stimulate the immune system which then would cause a temporary worsening of the symptoms of the eye disease. Neither being hypo nor doing RAI CAUSES the eye disease. The symptoms just worsen. Now I can speak to the issue of being hypo and how it might appear that it causes the eye problems, when it doesn’t really. I have experienced TED, and gotten into the cold phase. I totally panicked one year because my double vision started to worsen, and I went to the opthamologist who calmly told me to get my thyroid levels checked. He said if I was hypo, that my eye muscles would be working harder to provide regular vision, and that if I got back to normal levels of hormone, things would improve. He was correct. I needed a slight tweak to my replacement hormone, which I got, and my eyesight went back to normal. So, being hypo wasn’t causing a return of the disease, it was simply interfering with the proper function of my body. We corrected that, and things went back to normal, overall, including the eyes.

If you have active eye disease, taking prednisone at the same time you do RAI has been shown to prevent any worsening, temporary or otherwise, of the eye condition. You could ask your pharmacist to tell you about possible side effects of prednisone, but a lot depends upon 1) the dose and 2) the length of time you would need to be on it — if you would need to be on it. (Remember if your eye disease has already gone cold, you might not need to take it.)

I know this is a long response, but you also asked about going hypo after RAI and the studies that suggest that the hypo condition can cause the eye disease, or worsen the eye disease. Some folks assume that removing the thyroid makes them hypothyroid for life. That is only true if they were not taking replacement hormone. "Being hypothyroid" is a technical term that refers to the level of thyroid hormone in the blood. If we are taking appropriate levels of replacement hormone (which is chemically identical to T4 -thyroxin) we are not hypothyroid, we are "euthroid." If we are taking too much replacement hormone, we will become hyperthyroid again.

[Kimberly]

#1061687

Hello – Here’s a link from the National Institutes of Health that includes info on the uses and potential side effects with Prednisone, which is one type of corticosteroid drug:

http://www.nlm.nih.gov/medlineplus/drug … 01102.html

I know of TED patients whose symptoms have significantly improved with steroid therapy, but of course, the potential side effects need to be considered.

Also, a note on the risk of worsening vs. developing TED with RAI. The studies have actually been somewhat conflicting on this issue. In one of the earliest studies (Bartalena et. al., 1998), the risk was more weighted toward *worsening* of TED. In a more recent study (Traisk et al., 2009), the risk was much more weighted to the *new development* of TED. For reference, here were the percentages of patients experiencing complications (either worsening *or* development) with TED following the different treatment options:

Bartlena 1998:

RAI: 15%
Anti-Thyroid Drugs: 4%
RAI + Steroids: 0%

Traisk 2009:

RAI: 38.7%
Anti-Thyroid Drugs: 21.3%

Eye complications are certainly not guaranteed with RAI — 85% of the non-steroid 1998 RAI group and 60+% of the 2009 RAI group did NOT have eye complications. However, the increased risk is certainly something to take into consideration when making a final treatment decision.

[Ski]

#1061688

You’ve got great advice here ~ just weighing in on the dangerous side effects of ATDs, since we heard something about this at our last conference. It appears that MOST of the time, if you are going to experience the very worst side effects (liver damage or severely lowered white blood cell count), it typically happens in the first six weeks of taking the ATDs. Not to say that’s the same for every patient, but most patients present with these symptoms quickly, so you can have some level of comfort after you’ve passed that point and all is well. Unfortunately, once you’ve been successfully on ATDs for a long period (and then stopped), you cannot say that you are out of the woods in this regard, because every time you begin taking the ATDs, the clock starts again and it COULD rear its head in the first six weeks. Still, it’s nice to know there is some specific length of time, after which most patients do not experience the scariest side effects.

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