[Thila]

#1018378

Hello,

I am new here, but have been reading so many useful posts. You really have a nice group and I am so happy I found you. I am going to summarize quite a bit of information about my background and hope this makes sense…

I was diagnosed with Graves disease in 1998 and have been on Methimazole. I was on high doses of Methimazole at first to get things under control then I went on low doses for quite some time. It seems like my thyroid does not want to cooperate with me the last few years and my numbers have been up and down then WAY up again. This had led to two endocrinologists that I have visited in the last few years insist on RAI.

My current endo has told me that my goiter had enlarged and wanted me to get an ultrasound which I completed. The ultrasound showed a hot nodule on the left and a mass on the right. My endo wanted the mass biopsied which I did a few days ago and now I am waiting on results to the test. I am prepared for the worst, but hoping for the best. My current endo has already said that my thyroid will need to be treated with RAI or surgery if it is cancerous.

I am sure you are wondering why I have not completed RAI at this point. I have read so many books and too many articles to count on the net. One day I think, "Yes, RAI is the route to take!" but then I read a horror story about it and change my mind. I know there are alarmists on the internet and not every source of information out there is reliable, but it still poses more questions than answers in my brain. Maybe I have read too much? I may no longer have a choice depending on my biopsy results. I am so confused right now but I feel a wee bit better by typing this out. Thank you for listening.

[Kimberly]

#1064367

Thila – Welcome to the boards…glad that you found us! Hopefully, you will get good news from your biopsy results. As you said, this will really be the key to helping you and your doctor determine next steps. The one bright spot is that if it *is* thyroid cancer, this is one of the most treatable forms of cancer that there is.

Once you get the results, we can’t *tell* you what to do…as we are not trained medical professionals, just fellow Graves’ patients. However, we are happy to serve as "sounding boards" as you work through your decision.

Please do check back and let us know what the results are…and feel free to stop by to vent anytime! ” title=”Smile” />

[Bobbi]

#1064368

It makes me angry that people are still trying to scare others away from a perfectly good treatment option — i.e. RAI. I do understand why some folks do not want to try it, but if you HAVE to remove your thyroid, please know that RAI has been used for a long, long time and the studies that have been done to actively LOOK for problems arising because of it, haven’t found anything. In fact, one study that looked at the death certificates of people who had had RAI — tens of thousands of death certificates — found that the predominant causes of death in the group could be related to having been hyperthyroid, not to the RAI. If the methimazole is not handling your hyperthyroid issues, you need to try to listen objectively to your doctors, and stop listening to scare mongers on the Web.

As to the possible thyroid cancer issue — if you do find the biopsy results show cancer, there is a really good group on the web for support for you. I cannot remember if the end of the web address is "org" or "com" by the group is ThyCa. My husband had to have a mass biopsied long ago, and the ThyCa folks sent us some very good information.

I wish you good luck.

[Thila]

#1064369

Thank you so much for your responses. I am going to keep reading the posts on this board and hopefully will hear some news in the next few days about my biopsies. This forum seems to be the first one that I have visited in a long time that is objective and non biased which is a huge plus.

I have a couple of questions about RAI. I am a high school teacher and I worry about exposing any of my kiddos. I have read about how safe it is but I really want to use caution. I am also curious if RAI exacerbates any other conditions. I ask because I was diagnosed with skin melanoma three years ago and had a nice chunk cut out of my arm. I know this sounds crazy, but I do worry about RAI creating or exacerbating another problem. I also have super dry eyes. I have never been diagnosed with any thyroid eye disorder but my Systane eye drops are my best friend. These are just some of the things going through my head at the moment. I appreciate everyone letting me vent!

[Harpy]

#1064370

Apart from sharing experiences and information with others a very important function of the forum is to allow people to vent, a place to release some of those frustrations, it helps in a small way to relieve some stress and thats always good.
As for the treatments available, ATD’s, RAI or Surgery, each has it’s own pros & cons and I don’t think anyone could say which is better or worse, each individual needs to look at what option is most appropriate for them and the most appropriate option is dependant on each individuals current state, needs, fears, health etc.
James has a similar story to yours, he went into remission a couple of times and had a couple of relepses, but each subsequent remission was longer, and each relapse was shorter and currently he’s sitting at 7 years in remission and he sees this as positive signs, I’m sure he’ll come and correct me if I have misrepresented him.
My angle is whatever treatment path you choose, try to compliment it by also making positive changes in your diet & lifestyle in addition to some actions in stress reduction, as these things contribute significantly to healing the body.

[Bobbi]

#1064371

I certainly can understand, Thila. If I had had a bout with melanoma, I, too, would be somewhat skeptical of RAI, and I would spend quite a bit of time questioning the doctor about it.

As for your specific question about RAI and your high school students. I131 — which is the form of radioactive iodine used in our treatment — is a) very soluble in water and b)relatively short-lived (a half life of 8.1 days). So, because of the solubility issue, any RAI that is not captured by thyroid cells within the first day or so after we take the treatment is excreted from the body, primarily through the urine, but also through saliva and sweat. After a couple of days, any excess RAI is gone, and only the RAI that is left inside thyroid cells remains in the body. We are told take in sufficient fluids, to double flush the toilets for a few days after RAI, and to use plastic eating utensils, not to share anything that goes in the mouth, to double wash sheets, for this reason.

Then, the issue becomes one of the remaining radioactive material which is at our throat level. We are told not to hold small animals or children — because we would be holding them up by our throats, right? We are told to keep a distance of a few feet from adults and older children, for at least a week. After a week, half of the radioactive material in our thyroids is gone. These recommendations are largely to prevent anyone else from receiving a dose of unnecessary radiation. RAI has not been shown to harm US and is unlikely to harm anyone around us, either. But we know that radiation exposures are cumulative over a life –todays’ sunburn adds to yesterdays chest xray, etc. etc. –so we are given specifics to help avoid giving someone else exposure. I mention all of this because many folks time their RAI for a long weekend (unless they have really small children). By the time they go back to work, they have eliminated the excess RAI from their bodies, and they keep a small distance between themselves and co-workers (or students) for the next week.

[Kimberly]

#1064372

I wanted to add my perspective on treatment choices, as someone who might still have to make a choice one day between continuing on meds or pursuing RAI or Surgery. I do read personal histories from people who have chosen various treatment options…and those experiences are valid from that individual’s perspective.

*However*, the thing to keep in mind is that the people who create their own web sites and post on groups/message boards are usually people who are NOT feeling well. You don’t see very many posts from people saying, “I was treated for Graves’ and I feel FABULOUS!” (Although we occasionally see them here, and we definitely appreciate it!) Nope, for the most part, these people stop posting and go back to living their normal lives. And we really don’t know what the ratio is of people who feel great compared to those who are still struggling.

I do take issue with folks who tell others, “DO NOT USE XYZ TREATMENT” without knowing anything about that patient’s background. (Yes, there are certain cases where you should NOT use a particular treatment, such as RAI not being recommended during pregnancy.) The problem is that all three treatment options have pros and cons. What if you tell someone that they SHOULD use one particular treatment…and they end up with complications?

As Harpy said, the best that we can do is learn as much as possible about the different treatment options and the potential upside/downside of each. Then we have to make the choice that is right for *us* at that particular moment in our lives.

[Thila]

#1064373

Thanks everyone for your replies. I got my biopsy results back and they ruled out Papillary cancer. I thought/hoped they would come out and say "you have no cancer whatsoever" but I didn’t realize they only tested for one form on the biopsy. I am still somewhat relieved and just taking things day by day. My Endo says I still have an abnormal nodule though (4 cm) and I am still under his directives to take 40mg of Methimazole a day to control my "extreme hyperthyroidism". They do not feel another biopsy is necessary. I feel good at this point but no chest pounding waking me up in the middle of the night and my thoughts are not those of a mad woman. I still drive everyone mad at team meetings at work by tapping my pencil way too much and swinging my leg or foot under the table. It’s funny that you don’t even realize you do these things until someone points it out. I am looking forward to just focusing on one task and being able to complete it and to sit still. And dare I say it…maybe meditate?

I go back to see Doc in a few weeks to run more tests and they want to talk about a thyroid uptake scan. I am fine with this and have accepted that it is ok if I need my thyroid removed or to complete RAI. I just want to work on being healthy again and getting back to my early morning walk/jog. This is so silly but one of the hardest parts has been when I was told to stop exercising. The last week has been pure hell with too many highs and lows. Maybe this is what I needed to put things into perspective ” title=”Smile” />

[cynthia]

#1064374

good morning I am also a relative newbe to this site however have been on it everyday since I got really sick played with graves for years mostily ignoring it big mistake anyway… am on the way to "wellness" it is a slow process and hard to tolerate but will happen with treatment I had surgery and love it felt better the day after surgery this is proablily not normal but that is what hapened to me good luck

[savtanee]

#1064375

I had the RAI and had to stay away from my husband and other adults for several days and from my grandchildren for longer (don’t remember exactly how long). I also had to carry a note from the hospital as to why I was radioactive in case it showed up on a monitor- presumably from Dept. of Homeland Security! At first I sort of laughed but the whole thing was not at all funny and actually upset me. be that as it may, the RAI worked very well. I think the key is to find a doctor that you trust. The internet can be overwhelming and although you want to be educated and informed, the best advice should come from a trustworthy medical professional. And btw, it is relatively easy to get information on doctors. A good rule of thumb is to go to a doctor who is associated with a hospital that has a medical school and if you want a second opinion, to go to a doctor with a DIFFERENT hospital/med school affiliation.
Wishing you best of luck and good health!!!

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