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I had thyroid ablation for Graves Disease three weeks ago... I was diagnosed with Graves a year and a half ago but have actually had it for 10 years. Because I have had leukemia twice, I was never put on anti-thyroid meds (I agreed with my docs that we didn't want anything messing with my bone marrow/white cells), but, as I delayed ablation and tried to research my options, my body went into a spontaneous remission -- something it has evidently gotten good at over the last 10 years. I found out in July that I had relapsed, and after 10 years of emotional rollercoaster, sleeplessness, headaches, tremors, etc. (AND after switching to an endocrinologist I trust), I agreed to have the ablation.
I was give 12 mCi, which seemed like a very small dose, and the following week was a piece of cake. About day 8 my neck started throbbing, and by day 9 my thyroid was huge and I felt like it was going to pop out of my neck. I had constant pain and non-stop, debilitating headaches. I couldn't lay down because the pressure on my esophagus made it hard to breathe... food got stuck when I ate, etc. I have been through natural child birth four times, many, many bone marrow biopsies, a placental abruption, etc. So when someone tells me I am going to experience mild pain, I don't sweat it. But this was crazy! Messages to my doc went unanswered (I guarantee he never even got them), and when someone finally called me about a clerical issue, and I told them about the pain, they checked with another doc (not my own) and called me back to say I had been given a "fairly large dose" of radiation and all of this was to be expected. So I have been taking Naproxen and Tylenol around the clock for two weeks, which has kind of been like putting a bandaid on an open fracture.
Over the last couple of days (this is day 22 post pill swallowing), the headaches have become intermittant and my neck/throat only hurts when I swallow, turn or lift my head, or talk too much. Thank goodness you don't have to do any of those things with 5 kids. :confused0031: I see my doctor on Thurs., and I have a feeling I am going to get this look like, "I am dumbfounded by what you describe." No one prepared me for this - nor did anything I have read -and I have been having serious regrets. HAS ANYONE ELSE EXPERIENCED THESE SYMPTOMS? And when can I expect to feel better?
 

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Is it to be expected? Yes. Is it common, yes and no. RAI ablation causes thyroid swelling, but you really can't predict it. Mine swelled too, but not to the point yours seems to have. I had 15mcgs and they are small doses, I don't really care what a doc says cause others here have had 100-150mcgs. Hopefully you will only have to deal with this a short time, but again, I really can't tell you. I noticed swelling maybe a week or two after the RAI and it started to go down about a week or two ago, which means it was swollen for 3-4 weeks for me.
I'm about 9 weeks out from my RAI.

I wish you the best with it and hope the swelling starts to go down soon.
 

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Thanks, JPGreco. It's nice to know what your timeframe was/is... I understand that, compared to cancer patients, Graves patients receive very small doses. I have read that 5-15 mCi is the acceptable dosing range for Graves treatment, and in Elaine Moore's book she states that "many clinics have settled on an arbitrary dose to result in the delivery of... 5 to 7 mCi." Cancer patients have most of their thyroids removed before they have RAI... With only a little bit of thyroid gland left in there, the higher RAI dose is given to kill any remaining cancer cells, but they aren't going to get the kind of swelling/pain some Graves patients evidently do. I have three friends that had thyroid cancer, and none of them experienced what I have. I seriously considered doing surgery instead of ablation, but, as you know, surgery is not without its dangers -- one of my friends had a trachea collapse as she was waking up from surgery. I must not be searching the right sites because I have not been able to find anyone complaining of really bad pain 3-4 weeks after (unless they experienced thyroid storm). I read Elaine Moore's book twice and still didn't expect this. It would be nice if doctors warned people that there is a chance they might have a more severe reaction. I am glad you are doing better and hope things go well for you in the months ahead. Thanks, again, for responding.
 

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Partyof7 said:
I had thyroid ablation for Graves Disease three weeks ago... I was diagnosed with Graves a year and a half ago but have actually had it for 10 years. Because I have had leukemia twice, I was never put on anti-thyroid meds (I agreed with my docs that we didn't want anything messing with my bone marrow/white cells), but, as I delayed ablation and tried to research my options, my body went into a spontaneous remission -- something it has evidently gotten good at over the last 10 years. I found out in July that I had relapsed, and after 10 years of emotional rollercoaster, sleeplessness, headaches, tremors, etc. (AND after switching to an endocrinologist I trust), I agreed to have the ablation.
I was give 12 mCi, which seemed like a very small dose, and the following week was a piece of cake. About day 8 my neck started throbbing, and by day 9 my thyroid was huge and I felt like it was going to pop out of my neck. I had constant pain and non-stop, debilitating headaches. I couldn't lay down because the pressure on my esophagus made it hard to breathe... food got stuck when I ate, etc. I have been through natural child birth four times, many, many bone marrow biopsies, a placental abruption, etc. So when someone tells me I am going to experience mild pain, I don't sweat it. But this was crazy! Messages to my doc went unanswered (I guarantee he never even got them), and when someone finally called me about a clerical issue, and I told them about the pain, they checked with another doc (not my own) and called me back to say I had been given a "fairly large dose" of radiation and all of this was to be expected. So I have been taking Naproxen and Tylenol around the clock for two weeks, which has kind of been like putting a bandaid on an open fracture.
Over the last couple of days (this is day 22 post pill swallowing), the headaches have become intermittant and my neck/throat only hurts when I swallow, turn or lift my head, or talk too much. Thank goodness you don't have to do any of those things with 5 kids. :confused0031: I see my doctor on Thurs., and I have a feeling I am going to get this look like, "I am dumbfounded by what you describe." No one prepared me for this - nor did anything I have read -and I have been having serious regrets. HAS ANYONE ELSE EXPERIENCED THESE SYMPTOMS? And when can I expect to feel better?
To a certain degree. I had RAI 3 times and I did have mild pain in the goiter and a mild sore throat upon swallowing but it was nothing I couldn't deal with.

Wonder if they gave you too much radiation? This sounds unusual to me. Maybe you should contact radiology; they would know much more, don't you think?

 

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Thanks, Andros. I have an appt. with my endo. tomorrow. 12 mCi is a reasonable dose, so I don't know what happened. I've had chemo twice, lots of bone marrow biopsies, given birth naturally three times, had a placental abruption and emergency c-section (and was up walking around a couple hours later)... and I have never been as miserable as I was the last three weeks. Oh well...
 

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Today is 3 weeks post RAI I had 18 mci first 2 weeks was a breeze now this week everything I eat is going straight through me, feels like someone is kicking me in the stomach really hard continously, my throat feels like there is a little person inside with sandpaper and it feels huge in there trouble swallowing. Shakey but then again my stress level is over the charts right now. Headache every day nothing I take is helping at all.
 

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Partyof7 said:
Thanks, Andros. I have an appt. with my endo. tomorrow. 12 mCi is a reasonable dose, so I don't know what happened. I've had chemo twice, lots of bone marrow biopsies, given birth naturally three times, had a placental abruption and emergency c-section (and was up walking around a couple hours later)... and I have never been as miserable as I was the last three weeks. Oh well...
 

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Discussion Starter · #8 ·
dLewis1958 - So sorry you are not feeling well either! I completely understand about the swallowing and the headaches that nothing will help. I also had an increase in hyperthyroid symptoms (tremors, stomach problems, etc), which is normal after treatment. Those things lasted a few days, went away, then came back for a few more days. I am four weeks post-ablation today and while I am not in debilitating pain most of the time, I still have a sore neck, it is hard (and hurts) to swallow (and it hurts if I talk too much) and besides the on-again, off-again headaches, something in the back of my neck is now out of whack. It's like my head is too heavy for my neck, and it hurts just to have it sitting there. I need to see a chiropractor, but I can't lay on my front or turn my head to the right (because of the swollen thyroid), so I'll have to wait.
I finally saw my endocrin. doc. this past Thurs. He was out of town for two weeks after my treatment, which explains why he didn't call back. He had no idea I had been in so much pain, and while apologetic about the way his office responded (or DID not respond), it was kind of a waste of time talking about it, considering the worst was over. He said he WOULD have prescribed a steroid to help reduce the thyroid swelling and said, based on my symptoms, I had radiation induced thyroiditis. I pretty much already knew that. : S He cannot explain why the right side of my thyroid is so much worse than my left, and the only explanation for the terrible headaches is the release of thyroid hormone following ablation. He said most people do NOT have this type of response but it is not unheard of (I read that 1% of those treated end up having radiation induced thyroiditis).
Right now I am on the metoprolol (beta-brocker), 500mg Naproxen 2X daily (anti-inflammatory), 500 mg Tylenol (I was taking two 500mg Tylenol per the bottle instructions, but he said that was too much, esp. if I was taking it around the clock),
.25mg Alprazolam (muscle relaxant for the back of my neck) and 10mg Zolpidem (for sleep). I was really hoping he would prescribe something for the pain in the back of my neck, but he didn't want to prescribe anything I might get addicted to, which I appreciate. Sleep was non-existant for many nights, even with my sleep meds, but the very low dose muscle relaxant he gave me, in addition to the sleep meds, knocks me out now. Good news is that my T4 and T3 were back in the normal range just 16 days after treament.
I don't know how long it will be before the neck (front and back) subsides and the headaches stop... Probably right about the time hypothyroid symptoms kick in, but this current amount of pain is bearable, and I can function normally. In hindsight, I would have demanded the thyroidectomy. There's no way that could be worse than what I have experienced; then again, my body seems to find a way to do the unexpected no matter what the treatment.
Hang in there! I would recommend calling your doctor for a prescription steroid.
 
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