Surgery vs Radiation

Sharon_C
Sharon_C Posts: 2,132 Member
edited December 1 in Social Groups
I've been fighting it for 8 years but today I found out that it's time to get rid of my thyroid. I have hyperthyroidism. What do you recommend? Surgery to remove it or radiation to kill it off? I was leaning toward surgery because I have nowhere to go for the 3 days that you can't be around anyone for the radiation. But there are risks with surgery. Any advice is appreciated.

Replies

  • twinkles2121
    twinkles2121 Posts: 137 Member
    edited April 2016
    I had severe graves. I wanted the surgery but ended up with radiation twice. I was leaning towards surgery only because I was scared to death of the radiation. (Swallowing an iodine pill did not seem like the best action for my health) but honestly, i'm glad i went this way. Few reasons specifically

    1) Shorter recovery and no scar
    - I felt tired and sick for the first 2 days, and after VERY hyperthyroid. The radiation irritates and inflames your thyroid badly and it produces a lot of excess hormone. Plan to ask your specialist for a beta blocker to ease your discomfort during this time. (I was prescribed propranolol, best decision ever)

    2) Less hormone replacement required after
    -I asked my specialist for smaller doses of I-131 to kill off part of my thyroid only. I was hoping for the sweet spot, you know? kill off enough so that the remaining is actually producing the right amount of hormone without medication. Lol of course it didn't happen that way, but my dose of Synthroid is much smaller (alternate between 125mcg and 137mcg, my sweet spot is in between) than it would be if I had killed the whole thing or removed it with surgery.

    Once the inflammation went down, and my hormone levels dropped, it was kind of like the "ah ha!" moment, where I felt great, so motivated, able to sleep without waking constantly, my eye lids closed all the way. I completed regretted waiting so long to do it.

    You can stay with other people during your 3 days, but keep several feet apart, wash your hands continuously, make sure you separate your food, dishes and laundry from others, and use a private rest room. My husband actually moved out to his parents for the 3 days, we lived in a small 1 bedroom, 1 bath apartment, separation was impossible.

    The only other advice I will offer is make sure you have a doctor you can trust to watch your blood test and levels carefully, and will supplement your levels with meds immediately. If you go radiation, and once the inflammation goes down, if your hormone levels drop below normal, you will start feeling hypo and honestly, in my opinion, It is literally the worst feeling in the world.

    -Brain fog, low memory/concentration
    -Ultra sensitive to the words of others
    -Extremely cold/tired
    -No appetite
    -Back pain between your shoulder blades
    -15+ day periods

    My doctors were watching my blood tests so closely, I started feeling crappy, so i went for a blood test (I have a standing order) and within the hour I got a call from my doctor's office who said they faxed a prescription to my pharmacy.

    One last thing, make sure your doctor is willing to treat you like a person, and not a statistic. Once your hypo, your doctor will want to monitor your levels to make sure your within a certain range. Thing is, some people FEEL better at the higher end, and some at the lower end. You want your doctor to be willing to change your medication and/or medication dosage if you don't FEEL right. Even if you are "within the range"

    That's my experience with radiation, if you have any questions you can pm me anytime. Maybe someone else can chime in for surgery? ;) Either way, Good luck with whichever you choose!

  • Sharon_C
    Sharon_C Posts: 2,132 Member
    Thank you so much twinkles. This gave me a lot of much needed information. I was leaning toward surgery yesterday but today am leaning toward radiation (even before I read your post). I just want to kill off part of my thyroid. I have no idea where I will go for the 3 days though.
  • MeepleMuppet
    MeepleMuppet Posts: 226 Member
    Radiation will kill all of it. You go on a low iodine diet for several weeks, starving your body of iodine. Then your thyroid takes up the radioactive iodine and dies. Surgery is easy, but like you said, has complications. I needed both (twice!) because of cancer and had absolutely no trouble either time. The scar is very small and in a wrinkle. The radiation was the best vacation I ever had. There are certainly pros and cons either way.

    I do not envy your decision. I wish you luck and keep us posted. Let me know if you want procedural details on either process or both. Like I said, mine was easy and nearly painless, so I have the complication-free perspective. I'm also very familiar with levo as the hormone replacement.
  • twinkles2121
    twinkles2121 Posts: 137 Member
    Radiation will kill all of it. You go on a low iodine diet for several weeks, starving your body of iodine. Then your thyroid takes up the radioactive iodine and dies.

    The first part is not exactly truthful. The hospital orders in the radiation. It's a pill made of I-131. Depending on the dosage of I-131 it is possible to kill off your entire thyroid. Talk to your specialist, you can request smaller doses. As I said, I've been for radiation twice and my thyroid still functions.

    http://www.endocrineweb.com/conditions/hyperthyroidism/radioactive-iodine-hyperthyroidism
  • ChelleBelle2708
    ChelleBelle2708 Posts: 131 Member
    I was overactive and have Graves disease. For me I had surgery as my Thyroid become very enlarged and was suffocating me at night. I had my surgery in August 2013.

    I've never regretted my decision. I went in to hospital that morning, called for surgery at around 12.30pm, and think I was back up and awake by 4pm. Not entirely sure as I was out of it. For me I was very sick after, couldn't keep water down. This went on for approx. 2hrs until I had a sickness jab and was fine. They said it was effects of anaesthetic (My Mum has same problem). After the sickness I was starving, and polished off a Fish & Chips dinners around 7pm/8pm. So no problem with eating. My throat was a little sore, and I sounded like Barry White for a few days but nothing major. I polished off a second meal that evening too (Even before Thyroid disease, I was a big eater and love my food!!).

    I went home in the afternoon the following day after lots of bloods were done. I was initially put on Calcium tablets as levels were a little low (common with the op), and straight onto Thyroxine.

    I went back and saw surgeon after 3 weeks (who has done a marvellous job I must add) and was given the all clear by him, and went off to see endo again.

    For me personally, I have stayed seeing endo every 3-6 months since. My levels were very up and down, and didn't add up. After lots of investigation, specialist blood tests and scans, it was revealed I have a very very rare antibody in my blood that would latch onto the TSH, making it unreliable. I have to add this is so rare even a bio chemist lab were quite surprised and now request a sample of my blood every few months to keep track of it.

    Endo also started me on T3 along with Thyroxine which has worked great for me, and checked all vitamin levels - especially B12, Calcium, Vit D, Ferritin and Folate (these are often low in people with Thyroid conditions). I was found to have low B12, and started on Methyl B12 supplements.

    All in all, its been a very bumpy ride since my op, but for the past year I have felt the best I've done in a long time. It isn't just about having an op or RAI, and then on a couple of pills a day, there is more to it. For me I put on weight after my op (I think this is common), and last April after I felt my most stable I overhauled my diet, added supplements where needed and started exercising. Since then I've lost 12kg, feel so much more alive and healthier than I have done in a very long time, and keep fingers crossed it stays that way.

    Sorry for rambling on. If you have any questions about surgery, I'm more than happy to answer if I can x
  • Sharon_C
    Sharon_C Posts: 2,132 Member
    For me I put on weight after my op (I think this is common), and last April after I felt my most stable I overhauled my diet, added supplements where needed and started exercising. Since then I've lost 12kg, feel so much more alive and healthier than I have done in a very long time, and keep fingers crossed it stays that way.

    Sorry for rambling on. If you have any questions about surgery, I'm more than happy to answer if I can x

    Thank you so much for answering me. Putting on weight is my biggest fear. I mean, really, really big fear. I have worked so hard to lose and I've been lifting weights and I'm so happy with my body that I don't want it wrecked by this stupid, dumb thyroid.

    This is such a serious concern for me that I would even consider putting off doing anything and stay on the methimazole (sp?) because I'm actually doing very well on it but the doctors say I can't be on it forever.
  • ChelleBelle2708
    ChelleBelle2708 Posts: 131 Member
    [/quote]

    Thank you so much for answering me. Putting on weight is my biggest fear. I mean, really, really big fear. I have worked so hard to lose and I've been lifting weights and I'm so happy with my body that I don't want it wrecked by this stupid, dumb thyroid.

    This is such a serious concern for me that I would even consider putting off doing anything and stay on the methimazole (sp?) because I'm actually doing very well on it but the doctors say I can't be on it forever.[/quote]

    I do understand your fears. I was so worried about the weight aspect too.

    The problem with that drug is that it can kill your white blood cells, leaving your immune system shot apart. Worst case you'd require bone marrow transplant. I've yet to hear of anyone needing this, but I have heard of some people staying on the drug for a good few years with no problems.

    That aside you can just as easily gain weight on that medication as you do if you were underactive. It is swings and roundabouts. Definitely not an easy disease to live with
  • Sharon_C
    Sharon_C Posts: 2,132 Member
    I've been on this medication for 8 years. It's definitely time to get off it. Right now I'm leaning toward surgery, probably toward the end of the year. I have an appt with a new endo at the beginning of June so I'll discuss all of this with her. My old endo was horrible, so fingers crossed this one will be better.

    Thank you for all of your input!
  • CSARdiver
    CSARdiver Posts: 6,252 Member
    I had both, but had the total thyroidectomy in 2000 when they were far more conservative. The surgery was a breeze and I was mtn. biking a week post op (against doctors orders). I had radiation 3 months later and that was rough, but more so being sans thyroid during those 3 months. Both very short term issues and resolved rather quickly once balanced out with Synthroid.
  • shvits
    shvits Posts: 249 Member
    I had surgery as I am allergic to iodine. The surgery is VERY tricky and not just anyone can do it correctly. My Dr. N. Duh of UCSan Francisco said he NEVER removes the whole thyroid, just 1/2 at a time. I have half of a thyroid and still some of my own thyroid function. Replacement is not as good as your own production of thyroid hormones. If your are hyper and do not have cancer then you really don't need the whole thyroid removed in my opinion.
    After surgery the main problem is that I can not sing anymore, but have another problem with my lungs and that also caused problems with singing.
  • Sharon_C
    Sharon_C Posts: 2,132 Member
    Thank you
    shvits wrote: »
    I had surgery as I am allergic to iodine. The surgery is VERY tricky and not just anyone can do it correctly. My Dr. N. Duh of UCSan Francisco said he NEVER removes the whole thyroid, just 1/2 at a time. I have half of a thyroid and still some of my own thyroid function. Replacement is not as good as your own production of thyroid hormones. If your are hyper and do not have cancer then you really don't need the whole thyroid removed in my opinion.
    After surgery the main problem is that I can not sing anymore, but have another problem with my lungs and that also caused problems with singing.

    Thank you for sharing your story. I saw a different endocrinologist last week and she basically told me the same thing. She's pretty positive that she can kill just the nodules with radiation and I won't be on any medication at all after that. I'd like to hope that is true but am not putting a whole lot of faith in that. I've heard it's very hard to get the radiation exactly right so you're not on any medication.
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