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Radioactive Iodine - should I have it??
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Questions in the Thyroid forum are answered by Mark Lupo, MD. Topics covered include Goiter, Graves Disease, Hyperthyroid, Parathyroid/Calcium Problems, Thyroid Cancer, Thyroid Nodules/Cysts, Thyroiditis, Thyroid & Pregnancy, Thyroid Stimulating Hormone (TSH), Thyroid Tests, and Thyroid Surgery.

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Radioactive Iodine - should I have it??

I was diagnosed with hyperthyroidism 4 months ago. I can track my symptoms for about 8 months (just shortly after my daughter was born.  My meds are not improving my TSH level (which has stayed at 0.02).
My Doctor wants me to have radioactive iodine next month. I don't understand why it is so important to have this treatment straight away. Is it really necessary? I haven't really been sick for that long (although I do feel really sick most days). Has any one had this treatment? I REALLY DON'T WANT TO GO HYPO!!!!! And my doctor pretty much said I would. What will happen if I don't have it?
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16 Comments
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Avatar_f_tn
Hi there,

Have you been tested for antibodies? some women may develop thyroid disease after giving birth, but it's reversible after a while. This is only a suggestion and I'm not a Dr, but you should make sure you get tested for antibodies and you should be working with an endocrinologist (not your GP) that you feel confortable with. By this I mean, someone that doesn't rush you into doing anything you're not confortable with. But first, make sure your hyper condition is due to antibodies (Graves Disease) and not other condition.

Now, in regards to RAI. I was diagnosed with Graves almost six years ago. The Dr I had wanted me to rush into RAI and I didn't feel quite confortable with it. We're talking about radiation here, and although they say it doesn't affect anything but the Thyroid, I don't think they're sure about it, how can they?. I've always thought that one day (maybe in 50 years or so) they'll come back and say that "it wasn't that safe afterall" or "it has such and such side-effects". I didn't like the fact that my Dr at the time didn't want to discuss any other alternatives. So, I changed Drs, twice, then I found an endo that was willing to sit down with me and discuss my alternatives along with pros/cons and allow me to make an informed decision. These are: meds, RAI, surgery. After a lot of research, I decided to go with meds and it's work out perfectly, with the exception of when I'm under sever stress, then my thyroid usually goes off.
But I know that and usually check my levels when I'm under such situations. Now, in regards to RAI, I found a lot of info about people who had it and deeply regret it. What happens with RAI is by using radiation your thyroid is slowly "burned", this process can take several months and your meds need to be changed and monitored closely as it'll need to change while you're thyroid slowly dies....at the end, yes you end up been hypo, usually very hypo. Maybe someone else can talk about his/her experience with RAI, but this is what I found out and don't regret it. Remember is a type of radiation. If I had to chose I'd go with surgery (you need to find an experienced surgeon for this as your parathyroids are located in your thyroid and if accidentally removed may cause a problem regulating calcium). Again, many people I "met" doing research regret having done RAI. Don't rush into anything, and look for a Dr that's willing to listen and work with you. And don't forget to make sure you get tested for Antibodies before making any decision. Hope this helps and keep us posted!
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Avatar_n_tn
so do you think that the thyroid function is actually affected by stress?? If so..does that mean that we can help to keep it going good by lowering our stress levels??
goodluck with your situation.
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Avatar_n_tn
Thank you so much. I have talked to my husband straight after reading your response and I've decided I won't go ahead with it until I have seen a specialist and looked for other choices.
I think my doctor may have done that test - she seemed pretty convinced it was Graves although I have no family history. I am seeing her this week and will check and get a referal for a specialist.
Did you try different kinds of pills? I am an Australian and theres apparently only 1 pill (Neomercazole - a carbimazole). How long should it take to make a difference.
And YES when I am stressed I get really sick with all my symptoms and can not sleep even if I am tired - being stressed is such a huge factor - although In think my hyper makes me extra stressed.
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Avatar_f_tn
yes, stress is a huge factor! according to my endo, in my case, when I got diagnosed with Graves I was going thru an extremelly stressful situation, so my endo says that it was a trigger of the disease onset. I may have developed Graves anyway later on life but it coincided with this event. And yes, I tried to control stress reminding myself that it's no good! sometimes it's difficult so I just keep an eye on my thyroid levels during those times.

It seems like in different parts of the world, there are preferences for different meds. I'm in the states, and the preference here is to start people on PTU (too long to spell out). So I was started on PTU and didn't react very well to it. So my current endo switched me to Tapazole, which happens to be the prefered med in Europe. I have talked with different Drs that have practicing experience here and in Europe and they don't know the reason. Tapazole worked wonders for me and continues to do so. So maybe you can suggest to your Dr to change medications while you wait to see an endocrinologist.

Good luck and hang in there! I know how it feels having been there myself. It's not fun :-)

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Avatar_f_tn
Also, try to get a copy of your lab results for your records. I don't know Australia, but here in the states it's the law, a patient can request a copy of labs.
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Avatar_n_tn
I got sick while I was preg with my 1st child. But, didn't realy realize that I was sick until he was a year old. I was diagnosed with Graves. I was on 13 pills a day for a year. Trying to get everything under control. This was 11yrs ago and I can't remember what I was on. After a yr of being checked every month I was taken off to see if I would stay under control. I went up up up again. So I took Radio Iodine. It took several months to get to "normal" and took another 5-6 yrs for my thyriod to finaly die off to be hypo. I wouldnt change what I did. (excpet for being sick in the 1st place) I wouldnt go back to having graves for anything. The stress was horrible, I looked like a hampster when it was being squeezed (eyes popping out)My marriage was failing I wasnt being the best mom I could be, the depression was horrible I couldnt have sex anymore, my heart rate was 160 just walking into a store, and I couldnt breathe. Even tho I lost 50lbs in a month I looked like ****. Takes a lot of patience to try and get back to normal. My mom also had Radio iodine when she was the same age as me. They told her it would be in her system for 10yrs, they told me for 1yr and not to get pg in that time. Even tho I don't know what this Radio iodine will/has done to me. I would do it again in a heart beat.
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Avatar_n_tn
Hello -  When I was 11 I was diagnosed with Graves at 15 I had RAI because I wasn't responding to PTU.  I also had a huge goiter (my thyroid was 6x its normal size).  I am and have been hypo since three months after the treatment of RAI.  I do battle with the dosage of Synthroid but all in all it really isn't that bad.  One thing you have to realize is that you will always have symptoms just the severity of those symptoms changes.  As you know Grave's disease is an autoimmune disease, like diabetes, lupus, etc. you will always have it.  There is now cure for Grave's or Hashimoto's.  Drs can only treat the thyroid be it hyper or hypo. If you had surgery and removed the thyroid all together you would ultimately end up being hypo...you no longer have a thyroid gland.  Its been 13 years and I have had no adverse effects from the radiation.  You get a very tiny amount of radiation.  Its no where near the amount of chemo..its something like 3 mercury.

I have not gained any weight.  When I was hyper my physical activey was restricted by my drs because I could of gone into cardic arrest.  My metabolism was that messed up plus I had high blood pressure.  A lot to handle at 11 years old.  I actually gained weight with the PTU (45 lbs).  Once I had the RAI my metabolism straightened out and I was able to workout, loose weight.  It actually did wonders for me.  Now I don't want to leave you with the impression that I haven't had problems but like I said before you always will one way or the other.  What my doctors always told me is that hypo is a lot easier to treat than hyper.
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Avatar_n_tn
Thanks for telling me your story. I am really worried about being hypo forever until I die!(If I get RAI). What is it like? Did they have your meds figured out straight away?
Do you think I should try the pills for longer? I have been on them for 3/4 months.
Did you have to stay away from your kids after? Some people have told me I will have to stay away for 2 weeks! ( I have 3 children under 4 & am a stay home Mum)
It's encouraging to hear you're okay now. Did you get sicker and sicker. I feel I am getting progressively worse the longer I have it.
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The test you need to document graves vs post-partum thyroiditis (the transient hyperthyroidism after pregnancy) is an I-123 uptake and scan.  The antibodies are interesting but not conclusive.  Usually anti-thyroid drugs are used for 12-18 months then weaned off and you are monitored for relapse.  8 months into treatment the TSH may remain low for a variety of complicated reasons, so I would not rely on this test in your situation but on the t4 and t3 levels.  

If you need RAI - most people do very well with it, but expect to be hypothyroid and make sure your levels are followed closely after the dose to document when you are getting hypo and start replacement therapy to minimize symptoms.

Good luck.
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Avatar_n_tn
Nomes,
Dr told me to stay away from my boy for 2 days. I was told to clean the toliet after I was done and do my wash seperatly from everyone elses. I slept on a sheet on the couch, I can't remember he told me to do that or I just did it anyway. I had tests done every month then every 3 months to make sure I wasn't going back to hyper. I was "normal" until my 2nd pg. When I shot back up to hyper and was on meds to try and calm it down again, but also getting ultrasounds done to make sure the baby wasn't getting a goiter. After he was born -poof- I was back to "normal" After that I was getting tests done every 6 months, then fell to every yr. 4-5 yrs ago I was noticing I was gaining weight. I went in before my checkup and I had gained 30lbs. And I was hypo. The weights came off in 3 months, and I was back in every 6 weeks trying to get my dosage right. Seems someone who has been sick notices the changes in their body more. So I was stable on my right dosage, and I felt funny, and I was a little off. Now I am pg again and this time I have uped my dosage twice in 3 months. I have tests done every visit, if I dont produce thyriod the baby can become special needs.
I think that weather your fighting hyper or hypo it's always going to be a battle. If you do have Radio Iodine you will go to hypo. I have thought it's much better then Graves. When I fist was on my meds before Radio Iodine my Dr thought after a year I would go back to normal. So I guess sometimes it works, you never know. Here is a story that makes me giggle now..but not then. I went to my first endo, and he told me to take my shirt off. He was looking at my goiter, skin etc. I had terrible trembles and I couldnt focus. After I was done I bawled all the way home thinking he was trying to molest me! I laugh now because I was out of my dang mind. It(thyriod) messes with you. You and your hubby talk it over and do lots of research. Just remember to take care of yourself.
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Avatar_n_tn
When I did my RAI this was 11yrs ago so maybe it has changed since then. But, they put me into a room, like a lab. This guy comes in with a BIG pill (I call it a horse pill) I swallowed it with LOTS of water. When mom had hers done they put it in a IV. That was 30yrs ago. Your doing so good on getting all the info you can, for you and your family.
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Avatar_n_tn
Thank you. You are so bubbly and positive. It is great to hear your story. I just can't believe this is happening to me! Some days I feel so sick but I still think it might be all in my head even though the tests show it. I SO don't know what to do. I am overwhelmed and all fuddled in my head. So many relatives are shoving advice down my throat. I just want to be normal again. I don't know what I'll do - I'm seeing my GP tomorrow.
I hope everything works out okay with your baby. It must be a little freaky being pregnant and trying to sort it out.
At least I have finished with the baby thing! I am 25 and have 3 children (That's definately enough for me). I live in Australia and my husband and I just moved halfway across the country for his work - which was stressful and that's when I started getting really sick. We don't have any family near us and I have been so freaked out looking after the kids and being sick everyday. I just want to lie in bed and be looked after.
This whole thing is sending me irrational and most nights I stay up anxious and I don't even know what i am anxious about. It's crazy.
Do you think if I don't have RAI I will keep getting progressively sicker? I an getting worse each week.
Thanks for listening and caring. I think you are fantastic - I've gone over a lot of the archives and seen you in there cheering people on and encouraging them. Let us know how you baby goes!!!
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Avatar_n_tn
Had my RAI in June, Had to stay away from close contact with my grands for 1 week. Slept alone for 1 week. The best part didn't have to prepair any meals for 1 week. Washed clothes alone 1 week. I used the 1 week because it was so easy to remember. Some things you can do sooner than that week. I was given the pill in a room that was off limites to all others. had to stay there for 1 hr to make sure there were not effects that would harm me. Then told to I could go home. If you take the RAI think of it as a weeks of vacatione away from the kids. If you can do it when school starts it might be less on you. If your kids are of school age of course.
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Avatar_n_tn
I would Absolutely love a vacation for a week!
What I am worried about is being sick after - and being hypo. Are you totally okay now? Did it work out for you and is your thyroid normal?
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Avatar_n_tn
I would Absolutely love a vacation for a week!
What I am worried about is being sick after - and being hypo. Are you totally okay now? Did it work out for you and is your thyroid normal?
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Avatar_n_tn
hyperthyroid versus hypothyroid
            hyperthyroid:    paranoid
                             sweaty
                             shaky
                             heartrate of 140
                             skinny (lost about 30 pounds)
                             a little crazy   (lol)
                                                                            hypothyroid:     forgetful
                             cold
                             slow
                             chubby (gained 65 pounds)
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