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advice from a mother who has been around the loop with thyroid. For THREE YEARS we have listened to doctors with the iodine, the pills, the weight gain and loss, many many prescriptions, high blood pressure and only God knows what else. right now we are getting ready for surgery. My daughter is worried it won’t work, but the only way it can get WORSE is if she dies.Other than that it HAS to improve. If I knew then what I know now, it would be surgery. This is the slowest, most confounding disease ever and every treatment takes MONTHS to see that it is NOT working. Surgery… I’d do it. wanda
I had my thyroid removed a little over a year ago. It took me 3 years to get to that point. I did everything I could to avoid it because I hate surgery and really didnt want another one. Anyways I decided that was what would be best for me. It has to be a decision that you, your daughter and her doctors make. You have to weigh all the options. I was hospitalized for 2 days. The incision is not large but mine is still red and raised after a year. The recovery was up and down. I felt kind of lousy after because we could not start on the synthroid until pathology came back to verify it wasnt cancer. I have been on the mend every since. I do believe that this was the best decision for me. It is however very up and down. I think no matter which way you go it is pretty much the same good days and bad days. Hope this helps. Katie
Do you have Graves? Did you ever do the radioiodine? If so how was that? How long is the scar? How noticable is it? How long were you away from work? I know these are a lot of questions, I am just so confused and dont know what to do.. My daughter is 15 and she is a cheerleader which starts next month.. this all just come up and she doesnt want to miss out on that. plus theres homecoming and friends and these are all her concerns.. I understand with the radioiodine she would have to stay inside for a couple days after taking the pill and her activity must be limited? Thanks for all your help!!!! I really appreciate it Cindy
It seems like most endos push the radioiodine simply to avoid the standard risks that come with any surgery. If you go to a surgeon that is VERY experienced in thyroid surgery the risks are small. An experienced surgeon will be able to minimize the scar. You may want to find out about the surgeons in your area before you make a decision. If they don’t perform thyroid specific surgery on a regular basis you may want to reconsider. My wife traveled to San Francisco for her surgery because the surgeon there does dozens of these every year. She is happy with the results.
My 15 year old daughter was just diagnosed with Graves Disease about a week ago. I need help.. the doctor is recommending the radioiodine to kill the thyroid and I wondering are there any side effects and would it be better for her if we just did the surgery? How big is the scar? How long is the recovery from surgery? Does anyone thing that one is better than the other? Please Help Me. Thanks I am going to the endo today and he wants me to make a decision and I dont want to put it off because her symptoms are getting worse. Thanks to all. Cindy
Cindy,
I do have Graves Disease. I did not try the RAI. It was just a decision I made for myself. The scar is 3-4 inches long. It is very noticable right now but I have been told it should fade within time. I keep putting Vitamin E on in hopes it will go away. I was out of work for about 3 weeks. The reason was I couldnt take the replacement medication because of the growth I had and I was just too exhausted. I have heard some people have been back as soon as 10-14 days.
KatieMy wife never had the radioiodine(RAI). She chose the surgery over the RAI because of the risk that the RAI could make her eye condition worse. She has been pretty fortunate with her eyes. Just a little puffy and dry sometimes. I don’t think anybody does both RAI and surgery unless the first procedure didn’t completely work. Her scar is roughly 2.5 inches long. You can’t really see it though because the surgeon made the cut in a normal crease line in her neck. You wouldn’t know she had the surgery unless you really looked hard. I have to say though, I have seen some people that have had the surgery and the scar is very visible. Again I think it has a lot to do with the surgeon’s expertise. The fact that your daughter is 15 may impact the healing process. I would imagine in a positive way. You would want to check this out with the surgeon to make sure.
Being hyperthyroid for any length of time is extremely bad for our long-term health issues. Compared to that, the treatment options we confront are relatively benign.
Doctors make recommendations based on what they see as the “safest” option for each individual patient. One patient might have surgery recommended, while another might be advised to stay on antithyroid medication. Quite a lot of the time RAI is recommended.
I did RAI, because I wanted a definitive end to my diseased thyroid’s attack on my body, and because I am afraid of surgeries. That said, my RAI worked fine, and within months I was well on the way back to health. RAI has beend used, successfully, to treat Graves disease for over 50 years, during which time the patients who did it have been watched and studied scientifically to determine whether or not the treatment brought adverse, long-term health consequences. Essentially the studies have shown that it is safe in the long-term. Additionally, women have gone on from having had RAI to have successful pregnancies, without any risk to future babies, provided they waited long enough (6 mos or so) before getting pregnant. Whatever treatment option chosen, pregnancies in the future will need to be watched more closely, because there are “normal” variations in thyroid levels during pregnancy that will have to be done “manually” by adjusting medication doses. RAI’s down-side is that it takes time for the thyroid cells to die off (up to 6 months). This waiting period drives many patients up the wall. We are so very ill with hyperthyroidism, that we want it gone, yesterday. Also, in a small percentage of patients (about 16%), RAI has been shown to temporarily aggravate the symptoms associated with the eye disease, TED. It does not “cause” the disease, but is thought, instead, to stimulate the immune system, which in turn makes the symptoms of other autoimmune diseases more pronounced for a period of time.
Surgery is recommended for some patients (for example — and only one example — in patients who have pronounced TED, where even a temporary worsening of the condition might be disastrous). Surgery, in the hands of a well-qualified, experienced thyroid surgeon can be reasonably safe. I have two friends who had thyroid cancer, whose thyroids had to initially be removed via surgery, prior to RAI being given (to kill off any residual thyroid cells). Their scars are minimal, folding (now) into the normal folds of the base of their throats. But the scar does go across the front of the the throat, just above the shoulder blades, and it appears that the incision is at least two or three inches long. I do not believe this operation is done arthroscopically yet, but you could check. In addition to the normal side effects of surgery (i.e. infections), in a small percentage of patients there can be damage to the parathyroid glands, and damage to the nerve which is responsible for the vocal cords. (RAI does not damage parathyroids or vocal cord nerves.)
It was hard enough deciding on a treatment option for myself. I cannot even imagine making the decision for one of my children. So I have a lot of sympathy for the position you are in. I can recommend a book called “The Thyroid Sourcebook,” by Sara Rosenthal to you. Ms. Rosenthal is a thyroid cancer survivor. And as I mentioned, people with thyroid cancer also get huge doses of RAI after their surgeries. So there is a lot of good information in this book about both treatment options.
Good luck, and I hope your daughter is well again, soon.
Bobbi — NGDF Online FacilitatorI am probably one of the few that have done RAI, PTU and then surgery.
The amount of RAI I was given didn’t do the trick. So they kept increasing my PTU but I was having some problems with the PTU so my
Endo wanted to do RAI treatment a second time. I opted for surgery.
I saw three surgeons before I made a choice. I was in the hopsital one
night and out of work 1 week. I had a very ill father and choice surgery to try and move the process along a little quicker to have more time with him. I am glad I made that choice because my father died 3 months later. The recovering from the surgery wasn’t bad just a real stiff neck for a few days. It has been 8 months since surgery and I am doing better except still trying to get the right dosage for my synthroid. The scar is not that noticable and like people said it is in the crease. I will say that the surgeons wouldn’t do surgery until they got my levels down quite a bit and this meant taking alot of PTU. I think everyone has different reasons for picking which way they want to go with treatment. The one thing I learned these past 2 years is to be patient. It is hard and I have been hard on some people but this board has been so helpful when no one else understood.
Good Luck with your choices and be thankful we have this board to express ourselvesHello Tim,
Just one point — it is not necessary that you have a goiter or suspicious nodules in order to choose surgery. Any Graves’ patient has the choice of surgery in order to remove your thyroid (barring other issues such as hemophilia) — it’s just a different way of doing what the RAI does, which is to render the thyroid ineffective so it will stop pumping out excess thyroid hormone in response to the antibodies.
~Ski
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