radio-iodine

[russkenzie]

I have just had my thyroid removed because of cancer I had a tumour the size of a lemon.I am going for radio-iodine treatment in two weeks not been told much about it anyone got any advice for me

[YeahMi2]

Hi there....would you mind going to check out the post by me (YeahMi2) in general and see if what I have is similiar to what you had? I'd appreciate your input!!:p

[azelea4]

Hi, I too have just had my thyroid removed and will be receiving the idoine radiation pill on 4/6, if you haven't been told anything about it I suggest you call your Dr office and ask questions, you need answers that your doctor should give you because he knows your history. I do hope that they did advise you to go on a low idoine diet and to stop taking your thyroid medication at this time, if not then you won't be able to have the treatment, so call that office and get answers.:)

[russkenzie]

I did ask about low-iodine and was told not to eat seafood for a week before hand and stop taking my liothyronine tablets two weeks before treatment:confused:

[Kimemitch]

I had a really hard time as the thyroid was depleted from my system. By the time I went to hospital and after, I was sleeping 23 hours a day and depressed the other hour. The second time I did it, I was much more prepared. Took daily walks on the beach, limited stress around me, rested a lot without feeling guilty and it wasn't quite as bad. Its not that is painful, its just some people have a hard time with the severe hypo state. I also, felt instantly better the 1st day they started the thyroid hormones back. Don't want to worry you, you prepare yourself to be tired until its done.

[azelea4]

Russ, here in the states if the iodine levels are not low enough then they won't give you the treatment, I can't have any dairy, eggs, or frozen meals from the store, I have check all lables if red dye #3, soy, milk or salt is on it then I can't have it, Kosher salt is ok, but can't have sea salt, can't have any kind of sea food either, they must do things differently there. Good luck hope all works out well.

[mel6]

I had rai about this time last year. I did the low iodine diet for the two weeks before - it's more difficult than you think if you are being totally strict (most U.S. sites and recommendations are very very strict) but my dr's advised me to avoid salt, seafood and green veg - I did this and also avoided anything pre-packed and just tried to stick to fresh food - easier said than done when you are off your thyroid replacement drugs - I was exhausted and I hardly had the energy to make a cup of tea - never mind prepare a fresh meal. Beg your mum/family/friends... anyone to look after feeding you in the second week if you can get away with it! I was allowed to stop the diet as soon as I took the rai (tablet form for me) and my dr's told me this beforehand so I took crisps and biscuits and even booze into the hospital with me (fridge in room) as I've never been a fan of hospital food!! Drink plenty of water and have good long showers whilst you're in and this just help speed up getting it out of your system - and you can go home sooner!

[pamokc]

I had the same thing (thyroid removal due to cancer) in September; had to wait six weeks before they would give me the radioactive iodine. Going so low with no replacement meds was the WORST. Throw a fit and do what you have to do to get on the replacement meds as soon as you can after the RAI. Also look into the Armour thyroid and keep yourself educated. I am going to try to get on the Armour myself. It evidently has the full range of thyroid as produced in the body rather than replacing just one aspect (T4/Synthroid). Another good site to look -- search for 'stop the thyroid madness' and see what you get.

[mikej2007]

Did anyone have pain in the neck right after treatment? I had it done last yr and 24 hours after the treatment the pain in my neck was horrible...like every gland was on fire. I was hot one min and freezing the next and my heart rate was so out of control I had to take heart meds until the rai had done its thing. I went to the e.r. at one point and they said "oh this is normal for rai"...my endo mentioned NOTHING of it.....glad its over but I will never forget it.

[worried mom]

Hi there, my daughter,36, just had total thyroid removed. papillary cancer, we don't know what to expect. Any info would help.

[neekneeka]

Hi there, my daughter,36, just had total thyroid removed. papillary cancer, we don't know what to expect. Any info would help.

Sorry to hear that, this site will help this is her personal website

http://www.thyroidcancer.org.uk/

[rmar]

I have just completed surgery for papillary cancer and am waiting to begin the radioactive iodine treatment. My thyroid and 27 lymph nodes were removed and most of them were cancerous.Everything that I can find says that we have an excellent chance to be cured and live a very normal life. I am a 57 year old male but am optimistic.

[Kimemitch]

Hi Worried Mom!! The very best thing to do is get educated on thyroid in general especially the numbers such as TSH, T3, T4 etc. I would recommend that she keep copies of her blood test and document what meds she is on at the time of the tests. Hopefully she will have no trouble getting regulated and back to normal once the hormone therapy is started, but if not she will have a jump on what is going on numbers wise. I also had the papillary and the protocol was to keep you in a hyper state or suppressed TSH which results in high thyroid. I had over zealous doctor who was pushing me over the edge with such a high dosage - so I had to get another doctor to get him to back off a little. So the biggest advise is to listen to her body and get educated. Its been 13 years and I am still having to push for what I need or don't need. I have a thalium scan next week (its an alternative to the radioactive iodine scan) that became available after I had some clean scans done by going totally off thyroid (hypo state). This is what she probably has to look forward to next. I had a hard time with that, so be prepared to really take it easy. Good luck - Mom she will be okay!!

[Scottie Dug]

Hi there, I had the radioactive iodine ablation treatment 4 days ago and I have not had any side effects at all. I have had a bit more energy than usual but the hospital said I would not feel the real benefits for a few weeks. Can't really tell you much more, nothing to tell. Doug

[hammers]

hi, l too was 36 when diagnosed with papillary thyroid cancer, i had two boys aged 3 and 9 and thought my life was over!
l live in the U.K and was sent to see a specialist who told me that i would have to go into an isolation ward for a week, from anything from 3 to 10 times with six months between rai treatments. l was given this in the form of a drink by a physicist. He returned evey day at 2pm to check my radiation levels. On the friday if the levels had dropped below a certain level he took me for a diagnostic scan and l was then allowed home to my family.
The whole procedure was completely painless although i did get very bored and lonely on my own in an isolation ward. However l do realise that this is a small price to pay!!!
After i got home i started on my thyroxin once more(having stopped it six weeks before treatment) and that was basically that.
l am now 40 and feel like nothing ever happened. l don't know whether you will be treated anything like this but l hope that if you are expecting to be this will be of some help.
Good luck and above all don't worry, l'm sure it was far worse for my family than it was for me.x

[Fiddles]

Thank-you for being so positive. On May 1st I have my thyroid removed because of cancer and I was worried about rai treatments. You have given me a more positive way of thinking. Thanks Fiddles

[hammers]

hi, have no worries about the surgery either, l was up watching tv in the day room about four hours after my op. Good luck for tomorrow don't worry and if i can be any more help let me know. x

[kalogan912]

I am going to have to take the radiation pill in a couple of weeks and I was wondering about the isolation part of it. I have 2 children one 12 year old girl and a 9 year old boy. Any info will help.

[Fiddles]

Hi, I have not had the radiation pill as of yet but from what everyone told me you will need to be in complete isolation til your levels are down. It apparently doesn't hurt but you will be bored because the average time is 3 days before you can go home. I was told to take lots of books, telephone numbers to call people, crafts, and even some of my own food because that hospital food is not that great. I was also told that the first day is like a holiday and then after that it becomes boring. When you get home you still cannot have close contact with your kids for approx. 4 more days. Anyone who has been through it let us know from your experience because like I said I haven't been there yet. Tip I was given....Drink lots of water!

[russkenzie]

I went in to hospital 11am thurs took pill no side affects bored out of my mind .Food was terrible.Monday morning took radiation scan got out 11am. had to keep my distance from kids for further 5 days could still see them for short spells. After that you wonder what all the fuss is about.Touch wood don't need to do it again

[ninib]

i'm going thru rai now. no pain, normal hot/cold, could be menopause..antsy about going out. i'm concerned about gaining weight... have lost 120lbs so far and i read something about my body would return to 'normal'? i appreciate any info.

[Fiddles]

Can't answer your question but................how did you lose 120lbs????????? Fiddles

[Jeff Houtz]

In order to find any residual thyroid tissue (that produces Tg) the suppression from your hormone replacement therapy needs removed, hence the 2-3 weeks of feeling horibble prior to the Tg test. One caution is that 20% of people have Tg antibodies that will prevent the Tg assay from working, make sure you get tested for TgAb's too.

[lall]

Hi, im going for RAI. ON 03/12 and have been told to stop my thyroxine for 4 weeks , which seems longer than other people,asking doc why. intrested to read that people have been advised to stop eating shell fish no advice re this , but i have felt the need for prawn sandwichs lately any comments ?

[lall]

how did your rai go?, Did you loose any weight ? im going on 03/12/ for rai and am worried about weight gain beforehand .!! thanks