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Hi smj78,
you re doing a great job. Further, it sounds like you have good access to good docs, whatever your decision. Ask Ski said, bottom line!? Treatment is treatment! I have had a need to have anesthesia several times, always an excellent experience.
YOu will slug through this, and pretty soon, one of these choices will seem "right." The one factor that you will probably want to include is the length of time from RAI to beginning to conceive, is longer than after the surgery. As lhc11 said in her post, that was one of the compelling factors for her.My experience for myself has always been that indecision and limbo is quite stressful. Once I make a decision, I feel at peace with it.
Nice that you were able to see all those docs this week!
ShirleyHi again,
This may not at all be the case with your endocrinologists, but my general impression from when I was looking into all this (and wondering why so many more people had RAI than surgery despite the bad experiences I was reading about online) is that there is such a long and successful history of RAI for Graves that many endocrinologists (in the US in particular) do think of it as the first choice for treatment. There are obvious reasons for this–the invasiveness of surgery and its potential for complications (as with any surgery), the overall rarity of skilled endocrine surgeons (this varies by location)–and then some reasons I think are less obvious, like what health insurance plans will/will not cover. My surgeon told me, however, that he is just now starting to see more people–and particularly women who want to have children sooner rather than later–turn to surgery for Graves (when it is available and covered by health plans) instead of RAI. I’ll say one more thing about RAI that is entirely about what I knew I needed for myself and is not meant as a comment on anyone else’s choice: I didn’t want to wait after the procedure to feel hypo (as pinky35 notes, she is only now hypo after 3 months past treatment) and only then know that it was time to start thyroid replacement; I simply couldn’t deal with the uncertainty of knowing how long that might take and of needing to monitor myself in that way. I just wanted the thyroid out and to be on the replacement immediately (which is what they do post-surgery, or what you want to confirm with a surgeon that they will do) and have that part of things be over. I also want to second what Shirley said about anesthesia. That is the *last* thing to be afraid of if you have access to good doctors. My anesthesia team did a perfect job and when I told them I was worried about being sick (I had been once before after a surgery) they made sure that I was given motion sickness medication both before and after surgery. Nothing bad happened in that regard. And by the way, my surgery took only 45 minutes and my surgeon apologized to my husband that it had taken him that long, but my thyroid was more enlarged than he had anticipated. I have a tiny scar that is already fading (and that I think of as a badge of courage).
But in terms of what you are reading re: regretting RAI, what you were wondering and what Ski has said is really important to keep in mind; she said it to me once too and it was very helpful. The people who come onto online support boards tend to be either those who have been newly diagnosed like yourself (or me last May), those with ongoing issues, and those–like our generous facilitators–who are simply donating their time to help others. MOST people who have successful treatment of whatever sort do not spend their time in online communities, because they are busy getting on with their lives. (For myself: I’m an academic, always in front of a computer, and I check in here off and on to procrastinate [which I really need to do less of!]; when I see something I think I can help with, I step in because I’m "paying back" the help I got here when I was ill). I have a close friend who, it turns out, had RAI for Graves over 10 years ago (it was an obvious choice for her, since she was truly beyond terrified of surgery); it worked great for her and she would be horrified at the thought of spending a single minute discussing it online. She also went on to have a healthy baby a few years ago, by the way (10 years after having been treated for RAI, and that delay only because she wasn’t ready for children before then).
Hope the above helps a little rather than makes things more confusing for you. This board is a great place to debate your choices even with yourself (though folks will of course also respond).
Hang in there,
lhc11I understand not wanting the anesthetic: I am petrified of general anesthesia. I only do it as a last resort. So, I had RAI, and no problems.
Part of the "no problems" however, may be that I had a more realistic view of what RAI would, and would not, do prior to doing it. I didn’t expect (as many people seem to do) any "instant" fix. I knew it would take a few weeks before I would even be able to start replacement hormone. I knew that once I started replacement, there could be a few months spent tinkering with the dose, to get it right. I also did not expect to feel "normal" again right away. I don’t precisely know why that was. Perhaps it was the information on this board. I knew that it would take some time for my body to heal from being hyperthyroid. Some people expect to feel normal right away — and it can be a frustration for them when they don’t. What I kept track of, instead, was progress. Every day I felt even a little bit better, could sleep a little bit longer, was just a wee bit less crazed and jangly, was a blessing. I noticed those things. And it helped me to stay patient through the healing process.
I mention this because even if you decide to do surgery, there will be a process of healing. You would start replacement hormone a bit sooner, because the thyroid tissue is gone all at once, not over a bit of time (as with RAI). But the tinkering with the dose will be similar; and the need for time "at" normal hormone levels for your body to heal will be the same.
Wishing you good luck with your choice.
Even though there are times that I wish someone could make the decision for me, I am actually very thankful that everyone here will give their expereince but not pressure me to do what they did or did not do. It is amazing how another site made me feel this way.
I go from peace to a true basketcase over this. I have found comfort in finding this site’s advice and experience. I feel less alone. Maybe my opthomologist appointment results will help steer me in a direction. I’ll probably be on here a million more times before then. ” title=”Wink” />
Sorry- this is my latest. I have been on methimazole for 4 week. My latest blood test results are:
Free T4: 1.90H
TSH: <.006L
Triiodothyronine, Free, Serum: 8.5 H (Is that just Free T3??)Bad thing is that I do not have much to compare b/c my internist did the original blood work and did total T4 and T3.
My TSH was <.01L a month ago. So, this looks like I have gone even lower since treatment. Ok-whatever. How does that happen?I was told to increase the meds from 20mg to 30mg. I will find out how to meet with a radiologist. If I decide RAI, then I have to stop the meds a week before. Is there anything I can do or convey to the radiologist in order to assure I would have only one dose of the RAI? One book I read stated that the size of your thyroid will impact this. How do I know my size? I have a large goider I guess. I don’t think it is visible, but you can feel it protrude from my neck. Does this put me at risk for needing a possible 2nd dose? Also, b/c my levels are still so high, does this put me at risk for needing a 2nd dose or thyroid storm? Maybe I should make a new post for this?
When I spoke with the nurse I actually had this feeling of calm and internal push for RAI.
Hi again (my, I am doing a lot of procrastinating today),
Someone with more experience with RAI can give you a better set of answers than I can, but one thing about your levels: in order to make sense of them (or have someone else make sense of them), you also need to know the "normal" range that the lab your tests were done at was using. This can vary from lab to lab (and sometimes even from test to test; mine, all done at the same lab, have varied a few times in this way).
Re: your lowered TSH, I don’t know, but my guess might be that you are hyperthyroid enough that the dose of meds wasn’t doing enough to keep things from still heading south (which is why they’ve now upped your dose, to try to counteract that).
Re: the amount of radiation they will use. I don’t think there is anything you yourself can do other than carefully follow instructions. My understanding is that first they do a "thyroid uptake scan," a kind of "test run" that measures how quickly your thyroid takes up the iodine; that rate, along with the size of the thyroid, gives the radiologist the numbers he/she needs to calculate the appropriate dosage of radioactive iodine. Another thing to know about this is that in preparation for RAI you both stop the ATDs and eat a low-iodine diet for 10 days (I think it is) beforehand — this is so that your thyroid doesn’t have iodine in your system to work with and so takes up the radioactive material at the expected rate/dosage.
One other thing that no one has mentioned here yet is that after RAI, as you may already know, you can’t go near other people (but especially small children) for a few days. There’s a whole set of precautionary measures you have to take, even though the dosage of RAI is usually much lower than the higher amounts they use for thyroid cancer patients. Others on this board can speak much more authoritatively about all of the above than I can, and of course the radiologist will also explain things to you. Also, they will want to see your levels in the "normal" (euthyroid) range before either RAI (I believe?) or surgery — that is one way they avoid the risk of thyroid storm (I know this is especially true for surgery, though I think it applies to RAI as well….). In other words I think you can expect to be on methimazole for a bit longer–which in a sense is good because it gives you a little more time to make your decision. It’s important not to feel rushed, if at all possible. (In my case I literally scheduled both surgery and RAI for the same day, and only cancelled RAI once I was really, really sure I wasn’t doing it, if you can believe it–but that is how torn I was!).
I did want to just briefly comment on what Bobbi said about surgery/RAI having the same time to heal for you to feel normal again. She is totally right that it will take time to heal, but as I understand it, how much time after either procedure depends on many individual factors, including how long you have been hyperthyroid. In my own (very individual) case, my thyroid levels were normal after surgery and remained normal (the TSH slowly crept back up into normal range, but the FT3 and FT4 remained fine) and, remarkably, I’m still on the same dose of thyroid replacement that I was put on the day after surgery (but I am keeping a close eye on how I feel and also asking for blood tests if I think I feel even a little bit off). And I was able to go for a jog about nine days after surgery. I healed quickly, both from the surgery and from being hyperthyroid, but then again I was only severely hyperthyroid for about 2 months, and even during that time, as awful as I felt, I had been doing yoga (the only thing I could manage to do at all, in fact), and I think that helped a lot. The point I am making, I guess (and let me be clear that I am not disagreeing with Bobbi), is that you have to expect that things will take time with either surgery or RAI, but that there is no way of knowing whether that time will be longer or shorter than anyone else’s since it’s all about your body and how it responds. The only thing that is certain is needing to wait 6 months after RAI to try to conceive.
Trust me when I tell you that you will be ultimately happy with whichever choice you make; everyone who has come back to this board to report on how things went testifies to that (yes, you need to avoid the "crazy" sites–I was on a few of those before I found this one too). Now is the hard part, being torn between the options. I know just how it feels but once you decide and the plan is put in place, it gets MUCH better. It sounds like you may be starting to have that "I know what I want to do" feeling — and I think all you can do, in the end, is trust that, whichever way it points.
lhc11
ok, in () are the limits given me
Free T4: 1.90H (.82-1.77)
TSH: <.006L (.45-4.500)
Triiodothyronine, free, Serum: 8.5H (2.0-4.4)I completely get recovey time. While I would love to be fully recovered the next day, I know that is not realistic. I think these blood results also put that in perspective for me. I thought "Man, I’m gonna be the one in remission after 1 month of meds." Well, yeah right, that did not happen. I know that there is a minimum of 6 months after RAI for trying to get pregnant. I recognize that I may not be regulated even then, although I hope so. With my personality, at least knowing that there is a time frame is helpful. If I go with RAI, then at least I will not freak anymore about pregnancy, until 6 months have passed. It took me 5 and 6 months to get pregnant with my other 2, so I will also not expect to get pregnant on the first try either.
I’m feeling like as long as I take care of myself after RAI/surgery, then I have to leave it in God’s hands, b/c my faith helps me too.
You are doing beautifully in your process! You can tell from lhc11, Bobbi’s, Ski’s and my comments that our own views, needs and opinions- AND fears, valid or not..come into play. A fear is valid if someone has it, but sometimes goes away with more information. I do think we should pretty much respectively and respectfully address our own experiences, though. My experience is that after surgery, I went back to work full time as an RN on a very busy floor. I was never nauseated. In retrospect, I wish I had gone back part time, to simply enjoy the extra time off when I felt good, to organize stuff in my house and go out to lunch with friends. I cannot see my incision, neither can anyone else. There was not any fiddling around with my Synthroid dose when I started it. It was several years after my surgery, and two more babies, before I needed to begin Synthroid, because I had a little thyroid tissue left (on purpose) which supplied just the right amount of hormone to be in a euthyroid state.
I happen to have worked in a recovery room for the past 10 years. My experience at a very large academic medical center, where i have prepared hundreds of people for various surgeries, is that I have not met one person who is worried about anesthesia. In the pre-op area, there is plenty of time to visit with the anesthesiologist, say any concerns you have, and have them addressed. A few worried about being nauseated, primarily hearing about it from people who had surgery a long time ago, or had huge long surgeries. But this is not the subject here. It is almost a total non-issue for today’s world in medicine.
The relationship of nausea is directly related to lengthy procedures of 5 hours or more, and/or big abdominal surgeries.
P<S. the day after surgery, I went for a walk.
Re your labs, no matter what you do, they say you are hyperthyroid, so your ATD has been increased. Whatever your choice, you will not have either procedure until you are more regulated with the ADT’s. Lhc11 explained that very well.
ShirleyOk-Hmm… I asked the nurse if I had to be more regulated on meds before RAI. She said "no,’ and that they would not do the RAI if I was in the normal range. Once again, totally confused. I mean, what if I’m not regulated for a year??
I don’t know! It has always been my understanding that treatment with either RAI or surgery needs to happen after hyperthyroidism and the associated clinical symptoms of being hyper, are managed by ATT’s and beta blockers. It is been my understanding from docs that it is dangerous to move forward with either treatment before while having too much thyroid hormone circulating, ie, a hyperthyroid state. I guess on Monday, you should call your endocrinologist, ask his thoughts on the subject.
As I said, I am operating on what I have been told. Perhaps there is new literature and evidenced based studies on this subject. But hyperthyroidism is a relatively dangerous place to be, so it seems safe and logical to me to be close to, or in a euthyroid place, accomplished by ATDs and beta blockers, before the next treatment of RAI or surgery is done.
ShirleyHmm, I don’t know about the being on meds and having it controlled before RAI–this was NOT the case for me at all. I was on beta blockers for heart symptoms, but never went on the antithyroid meds. The dose was calculated based on the result of the thyroid uptake scan. I was told the RAI had to be done within a certain timeframe after the uptake/scan or I would need to have are repeat uptake done, since they use the percentage uptake and size (from scan) to figure out the dose.
There definitely was a waiting period, as was mentioned above. I didn’t really have to monitor anything, I had blood draws every 4 weeks–I did feel when it started happening though. Mostly exhaustion and my hair falling out more then usual (nothing dramatic, just more then usual) and weight gain, even though I was still doing weight watchers. I do think sometimes it would have been nice to just get started right away (like is done with surgery), but honestly the few months hasn’t been bad at all (especially considering I have a 6 month wait anyway until ttc).
Hello – There is actually quite a bit of controversy over the use of ATDs prior to RAI. Some docs believe that the thyroid should be “cooled off” before doing RAI, in order to reduce the risk that the patient might experience thyroid storm when the thyroid starts dumping its stored hormone. Other docs say that this is such a rare occurrence, it isn’t worth putting the patient on ATDs first. One more thing that the docs can’t agree on!
I’m jumping in late on the issue of RAI and Thyroid Eye Disease, but this is another controversial issue. This was actually discussed at our most recent conference.
The most widely cited study 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. Of these patients whose symptoms got worse, 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.
Other more recent studies have yielded mixed results. Some have shown an increased risk of eye involvement following RAI. Another 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.
The individual who presented on this issue said that she would recommend a course of steroid therapy for any patient who had active eye disease and was classified as “high risk”. (High risk being defined as smokers, patients with existing eye involvement, and patients with high T3 and high antibody levels at the time of diagnosis).
However, there is still a lot of controversy around this issue. One doctor at the conference indicated that he would not recommend RAI for any patient who had active eye disease. (This gentleman was from Europe, where they are much more conservative about using RAI as a treatment option).
Plenty of patients have RAI and never experience eye issues. Some patients choose Anti-Thyroid Drugs or Surgery and *still* wind up with eye issues. However, until there is more conclusive evidence one way or another regarding RAI and eye issues, this is certainly a consideration that patients will want to weigh when considering treatment options.
I’m worried about the eye issues too, but I did have the endo say that who’s to tell I would not get worsening of the eye issues anyway. I’ll feel better after hearing what the opthamologist says. My issues are puffiness at the moment. No vision issues and they don’t appear larger to me.
Well I’m on the meds, so I guess I’ll see what happens to my levels before, if I choose, RAI. I proabably will not have it before a month anyway.
I did not have an antibodies test. Do you think I should request that?
My uptake test was 74.9% with normal being between 12-35% by the way. I had it in mid-December. If I do not have RAI until Feb/March, will I need to retake that test? So many questions……sorry!
I really do appreciate all of this. I hope I am not being a pest!
Hi Pinky, the issue here when a Graves’ patient is hyperythyroid, by symptoms and by labs. If you were NEVER on ATD’s (anti-thyroid drugs) then the issue is not an issue.
I am glad Kimberly wrote. I did not have the accurate information from the conference.
I sure would want to be on ATD’s when diagnosed with Graves’. Being in a hyperthyroid state, with all the associated symptoms of tremors, intolerance to heat, irritability, inability to sleeo. anxiety, etc. etc. From my view, what I have learned from my own experience, and from what I have read from (I think all posters) and the facilitators, the first steps to protect your body and your heart is to begin ATD’s, and beta blockers for fast and racing heart rate. All of this is to feel better, and decrease the risk of thyroid storm, which is an acute medical emergency.Re Kimberly’s reference to Batelena’s study (which was referenced in a lecture at the conference.) As she said, it is a controversial issue, that is for sure. My personal experience with steroids for TED is that I had them several times to reduce the swelling, which, in turn, reduced the pressure on my optic nerve, which, in turn saved my vision until I could have an orbital decompression. Steroids are an anti-inflammatory, and they have big time serious side effects. They are absolutely wonderful in certain situations, such as mine with my optic nerve atrophy, and with severe asthsma attacks, and more medical conditions. BUT they work when you are receiving them, and the symptoms come back after they are tapered and the steroid is discontinued.
I think it is good to gather information from our endos, read opinions on this site, which empowers us with more good questions to ask them.
Here is one review of Bartalena’s study by a guy named Ahlquist in the British Medical Journal. If you read it to the end, you will see that (as Kimberly said) there is controversy among the medical community. And is not even close to being recommended as a standard of care to recommend prednisone for eye symptoms and RAI.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116915/If I had eye symptoms, I would not have RAI, and I would not have steroids so that I could have RAI. There is certainly room for other thoughts and opinions on this issue.
ShirleyI’m unsure why the nurse answered your question that way. I can relate my experience, though. I was on ATDs for some months (cannot remember now how many) before deciding to do RAI. Prior to RAI I had to go off the meds for a week. I was on PTU, which has a very short "life span" in the body, so I became very hyper in that week. Not, perhaps, as hyper as I would have been had I gone directly to RAI without meds, but still, really hyper. The reason, I was told, was so that the thyroid cells would need iodine and have space for it (the RAI form of iodine). They didn’t want the antithyroid meds blocking the uptake of iodine (and, therefore, blocking the uptake of the RAI).
Yes, the size of your thyroid does enter into the decision for the dose of RAI. Usually/often(?), our doctors order an "uptake and scan" to provide them with more concrete information about the dose required. For this test we are given a very small amount of a different radioisotope of iodine. It is not the treatment form of RAI (which is I131). This test isotope has an even shorter lifespan than RAI does. Anyway, we are given a measured amount and told to come back, typically a day later (but sometimes a few hours later). At that time, the amount of the test iodine that made its way to our thyroids is measured (the "uptake"). That involved (for me) sitting in front of a microphone-like object that clicked like a geiger counter. Then, I was taken to a table where a machine passed slowly over my neck area, making "pictures" of the thyroid (the "scan"). This test is sometimes done as a diagnostic tool for Graves. The scan shows where precisely the iodine was collected in the thyroid. Sometimes its all over (Graves), but sometimes it can be in isolated clumps (autonomous nodes in med-speak). The scan also shows the size of the thyroid. From the amount of uptake (given in percentages typically), combined with the size of the thyroid, our doctors can come up with an amount of RAI to give. But I suspect endos are pretty good, also, at estimating size (if not uptake) from the way they touch the thyroid area when they give us their exams.
The thing is, if you want to assure that you only need one RAI, then the goal should be to "ablate" the thyroid. That means get rid of most, if not all of it. It is important to talk with the endo about that aspect of things. The endo does communicate with the doctor who administers the RAI. Ski’s RAI doc didn’t listen, apparently, and she had to do it twice. But the medical term you need to know in this case is "ablate."
As to needing to stay away from others for a few days. Yes, sort of. A lot depends upon the dose of RAI you specifically are given. A lot relates to the type of people with whom you spend most of your time. We need to put space between ourselves and others specifically to protect them from [i:3tclkjfu][b:3tclkjfu]unnecessary[/b:3tclkjfu][/i:3tclkjfu] exposure to radiation. Radiation exposures — whether they be from sunshine, or from xrays, or whatever — accumulate in the body over our lifetimes. Avoiding unnecessary exposure is beneficial. So, the reason to keep space between us is the same reason that the xray technician leaves the room before turning on your dental xray. It isn’t that the exposure by itself would be harmful: it is that all the exposures, over time, could be harmful. If you have small children, you would need to be more careful. ( I’m sorry, I cannot remember what you’ve said on this point.) Typically, with small children and small animal pets, we tend to hold them close to our necks — hugs, etc. And the smaller the individual (age-wise, particularly), or the smaller the pet, the more likely that radiation exposure could, possibly, be more damaging. There are a few other, more specific types of precautions that we could talk about later, if you do decide to have RAI. But keeping to yourself for a few days is a typical instruction.
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