[kareng89]

#1058855

Hi,

I was diagnosed with Graves in 2009, went into remission after taking methimazole for a year, and then started back on 30mg of methimazole this past August 2011. I have been grappling with the idea of RAI for the past couple of months–as my endocrinologist has been suggesting it from the beginning.

I am almost 23 and am in pretty good shape despite frequent weight fluctuations. I am tired of dealing with/ worrying about my Graves Disease and have seemed to convinced myself that RAI might be the solution. However, after doing extensive research (online, books) it seems like there are many people who REGRET doing RAI treatment.

For those of you who have gone through RAI treatment and the after effects–was it the right choice? Do you struggle with your weight, mood, energy level? Is the hypo worse than the hyper?

I appreciate any support/advice!

[Kimberly]

#1170416

Hello – Hopefully, you will get some additional responses, but in the meantime, you might use the “Search Posts” feature (in the top right-hand corner of the screen) and look for posts under RAI, radioiodine, etc..

I have not had RAI, but here are a few thoughts…

1. First, understand that the people who post on the Internet are generally those who have had a negative experience. Regardless of treatment choice, we love it when patients stick around here post-treatment to offer support and encouragement to others; however, for the most part, patients don’t come here to say “I was treated with XYZ and I feel great!”

2. Keep in mind that RAI isn’t a “quick fix”. (None of the three treatment options are). It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once you do go hypo after RAI, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.

3. I don’t know if you have any eye involvement, but the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists is that Anti-Thyroid Drugs or surgery are the preferred options for someone who has moderate to severe eye involvement, due to concerns over a worsening of eye symptoms. For mild eye involvement, some docs will recommend a course of steroid therapy in conjunction with the RAI to reduce the risk of subsequent eye complications.

4. I don’t know if you have small children, but with RAI, it’s important to fully understand the radiation safety guidelines and make preparations in advance for using disposable dishes, keeping distance from small children, etc.. Also, if you are planning a pregnancy in the future, keep in mind that there is a recommended 6-12 month waiting period after RAI…and antibodies can potentially remain elevated beyond the 12-month mark, which requires extra vigilance.

Bottom line, you will want to do your own research and make the decision that you feel is right for you.

Take care!

[Bobbi]

#1170417

I have to emphasize what Kimberly pointed out about the predominance of sick people on these websites. If you go back through our archived posts, you will see that the stories remain the same, but the names of the people posting change every few months. Only rarely do we get someone posting here who has gotten well again. We DO see that, but not often. Once people get well, and get back to living their daily lives, they do not spend time reading these bulletin boards.

That said, both Ski and I, as moderators here, had RAI. And we got well again. It took longer for Ski than it did for me. I was given an “ablative” dose of RAI. What that means is that my doctor, with my consent, wanted to eliminate my thyroid. Ski’s nuclear med doctor, without her consent if I remember correctly, decided to try to give her a dose that would make her “euthroid” (i.e. normal levels of thyroid), and it didn’t work, so she had to have a second round of RAI a while later.

Anyway, RAI does work. It is a process, though, and many people are impatient with that process. For someone who wants more instantaneous results, surgery is quicker, but there are also other side effect considerations to weigh with respect to surgery.

I wish you good luck with your decision. I hope you are feeling much better soon.

[LadyGrey]

#1170418

Hi Karen,
I had RAI and was very happy with my choice (although now I may be out of remission after 27 yrs). You have to consider the possible side effects of both radiation and surgery. As has been posted several times, if you opt for surgery, please choose a surgeon who is VERY familiar with Graves and thyroid issues. There is no quick fix with either. Your body takes time to readjust to yet another change. For me it was the better part of a year. Don’t let that worry you though. Right now you have to concentrate on a method to get better. Once you have made a choice – go with it – do something to take your mind off your illness – read, sew – you made the choice for better health – give your mind and body a break from the stress and you will heal. Be patient, keep us informed. Hugs and prayers, Priscilla

[gatorgirly]

#1170419

Hi Karen,

I am 27. I was diagnosed at 25 and after a year of PTU with very little symptom improvement, my endrocrinologist advised that remission was highly unlikely. He had been warning me of that for several months, so I had some time to weigh my options. I met with an experience thyroid surgeon but in the end, decided at my age, the risks associated with surgery were too great since I was in otherwise great health.

I had the RAI in February 2011. I experienced nothing unusual – sore throat for a few days, hyper symptoms after about two weeks. I went back on the PTU for a couple of months and then slowly weaned off them until I eventually became hypo. To answer your question – no way. In my opinion, nothing is worse than hyper. Yes, the weight loss was nice but I lost all my muscle tone, slept like crap and was a horrible friend, daughter, sister and co-worker to everyone around me because I felt so miserable all the time. Yes, the post-RAI journey was longer than I expected but it was a journey to being well again, so one I was willing to take.

It took 22 weeks for the RAI to do the trick, and as soon as I went hypo, I developed moderate TED. That was a lot worse than any of my hyper/hypo symptoms. I started a very high dose of prednisone for the swelling and it did a number on my weight and my face (I never had acne until six months ago). I am now on a steady dose of Synthroid, alternating 50mcg and 75mcg every other day. I am so glad I chose RAI because I am finally well again and after much struggle in the past two years, can finally go back to intense workouts, long days at the office and still have energy left for a social life.

It’s difficult being young with Graves. We are expected to be healthier than our aging parents but for you and me, it’s hard to explain to our friends and peers how sick we really are even if we look fine. The weight fluctuations are so harder to handle in your 20s when you’re supposed to be in the greatest shape of your life. Please make your decision based on you and your instinct, not what anyone on here or anyone else in your life says – unless it’s a health care professional warning you against one treatment or another because of something else going on that RAI or surgery could affect.

Good luck with your decision!

[kareng89]

#1170420

Thank you for the responses! It is nice to know there are people out there who understand the struggles of Graves Disease. It is reassuring to hear positive results from RAI, because it seems like a path I need to go down, some of my worries have subsided.

I will update on my decisions and stay active in this community.

[Oberon]

#1170421

New to this and struggling with my decision for treatment.

Gatorgirly,
Was the TED brought on by the RAI or did you have symptoms of that before? I have no eye issues now and do not want to bring them on with RAI.

Thoughts? By the way I found your post extremely helpful. Thanks.

Lisa

[Bobbi]

#1170423

Understand, Lisa, that RAI has not been shown to “cause” TED. People develop TED whose thyroids have never yet gone wonky (and therefore, they’ve never done any treatments for hyperthyroidism). Shirley, here on the board, had her thyroid surgically removed, and DECADES later developed TED. It is more likely for us develop our symptoms of TED within about a year or so of getting treatment for hyperthyroid, and thus explains the rush to “blame” one treatment, or another, or blame going hypothyroid. The mechanisms are just not well-understood. At one point I read, in a Thyroid Foundation bulletin that with the advent of soft-tissue imaging capability doctors were finding so many of us with “some” eye muscle swelling, that they thought it was possible that all of us have “some” TED. Kimberly has kept a file of some of the studies, and will probably post the links for you, but it seems to me to be all speculation at this point in time. I got treated for Graves in late 1996. At that point in time the eye disease was still called “GRAVES” opthamopathy. Since then, its name has been changed to THYROID-related opthamopathy, and the explanation given to me by my opthamologist was that the name had changed because they were finding it in people with thyroid issues unrelated to Graves.

So, the bottom line is that you should work with your doctors to determine which treatment option will rid you of your hyperthyroidism with the best chance of success and the least impact on your overall health. Don’t pick an option solely based on trying to avoid the eye disease. If you already exhibited serious eye disease, then treatment decisions weigh that into the mix. Otherwise, your other health issues are the dominant consideration typically.

[gatorgirly]

#1170422

Lisa,

I had very minimal eye involvement before the TED. However, neither my endocrinologist, neuro-ophthalmologist or the hospital radiologist think RAI made my symptoms suddenly severe. Personally, the timing seems to fit as if being hypo brought on the severity, since hypo and sudden moderate TED symptoms happened within the same week. Again, I do NOT regret my decision to have RAI. Like Bobbi said, since you have no eye symptoms, your eyes should not factor into your decision.

[Kimberly]

#1170424

Hello – Here are a couple of studies that looked at the percentages of patients who had a worsening of the eye disease or new development of the eye disease following different treatment options:

Bartlena, et. al. 1998:

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

Traisk, et. al. 2009:

RAI: 38.7%
Anti-Thyroid Drugs: 21.3%

Another study (Perros et. al from 2005) concluded that RAI was not a risk factor for patients with “minimally active” eye disease as long as hypothyroidism was prevented with early administration of T4.

The latest guidance on the treatment of hyperthyroidism from the American Association of Clinical Endocrinologists and the American Thyroid Association refers to RAI as a “risk factor” for progression of the eye disease. This doesn’t mean that every patient who has RAI will experience this (as noted in the studies above), but it *is* a factor to be aware of when making a treatment decision.

The ATA/AACE guidance on the use of RAI is 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. You can access the full guidance here; the section on RAI and eye involvement starts on page 622 of the journal article; page 30 if you download the guidance as a PDF doc.

(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. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf

Take care!

[kareng89]

#1170425

Update:

Received RAI treatment on April 23rd and so far have felt alright. Started atenolol (beta blocker) due to experiencing hyper symptoms and have felt okay since. Hoping things will be “normal” soon and will keep updating my progress.

[adenure]

#1170426

Hi!

I would really appreciate you keeping us up to date on your progress. I was on methimazole (5 mg. daily) for the last 7 weeks. It did a great job on my thyroid However, it beat up my liver which I just found out after getting my labs done on Friday. So, tomorrow I go for more lab work to make sure my liver is “righting” itself after stopping the meds on Friday. I don’t know if I’ll be a candidate for surgery as I was only on meds. for 7 weeks, and even though my thyroid was fine Friday, not sure if it will stay that way or not. RAI might have to be my “choice”. I have 4 young boys, so staying away from them would be hard, but I will do what I have to do. I call my doctor tomorrow to figure out what the next plan is.

Alexis

[mvk]

#1170427

Hi,

I had RAI on 4/23/12. Spent the first week isolated and the second week I actually felt mentally better and maybe a bit physically better. Now I am 16 days post RAI and my muscle pain is back full force. Sharp pain in my legs . Really hurts a lot. I seem more tired too. Can someone advise on my symptoms. I really would honestly say I feel worse now than I did a week ago. Is this normal? I wasn’t expecting this turn and would like to know if this up and down process is normal and hopefully will turn the other direction again soon. Thanks for any and all information. I really appreciate it and this forum in so many ways.

mvk

[Bobbi]

#1170428

mvk — approximately one week (give or take) after RAI we become very much more hyper than normal. While 16 days is a bit long for the process, it is possible that what you are experiencing has something to do with your damaged thyroid cells eliminating their stored supplies of hormone into the body pretty much all at once.

Then, another possibility is that as those cells are not making any thyroid hormone any longer, we sink towards going hypo. Our bodies react to the swing out of hyper in varying ways, but I remember muscle cramping, which I tried to alleviate with warm baths, and with slow stretching manoeuvers on the floor. Also, I was able to sleep for the first time in a long time, so I felt very tired, and did a lot of resting. Try to keep in mind that NONE of what you have been experiencing to date is “normal” for your body, and that it will take time for you to feel normal again.

[mvk]

#1170429

Thank you Bobbi for your encouraging words. Today I have the tremor not only in my right hand but now have added the left as well. There is definitely something going on. I will start taking my pulse and BP again more regularly to make sure I don’t need additional betabreaker dosage right now. I slept a long but restless night because of my muscle pain and still feel tired and overwhelmed. It is what it is and I will get better.

mvk

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