Radioactive Iodine Treatment

Keea

Hi,
I'm 34 and booked in radioactive iodine treatment for an overactive thyroid and am just wondering if anyone has had this treatment in st. Lukes Hospital, Rathgar? If so, can you please share your experience with me. I have to go up one Thursday and they do measurements and then the following thursday I go up and take the 'capsule'. I have 2 young kids (age 1 and 3) but met the consultant from St. Lukes who said that I can go home after taking the capsule and I can be around my kids but just be careful not to hold them close to my neck for too long. I did question him also on future fertility and he said that you have to wait at least 6 months before ttc but then there should be no problems with ttc. The other option is surgery but I don't want to take this route. I'm feeling so tired lately also. I am on medication - neomercazole and elthroxin (block and replace treatment). Has anyone got any experience with the radioactive iodine treatment? Did anyone have it and then go on to have kids?
Please let me know. Thanks.

CathyMoran

I had that treatment when I was a young child (it is no longer given to children normally now). Had a son since. I can not comment on anything else. I would have had the surgery if I had the chance (please note that this is my personal opinion). My daddy had the surgery and was fine afterwards.

Keea

Hi Cathymoran

Thanks for the reply. Just curious as to why you say you 'would have had the surgery if you had the chance'? Is there a reason for that.

Has anyone else out there had radioactive iodine treatment?

Judes

Hi Keea!

I had that treatment back in 2003. Like you an over-active thyroid - was on neomercozole on/off for several years, as I was diagnosed in 1999 whilst living in London with over-active thyroid. But I eventually became allergic to the neomercozole and broke out into a rash. They say you shouldn't be on it too long and four years was far too long to be on it.

Re. the radioactive iodine tablets - I still laugh at the experience. I went into the room, where lovely nurse/doc not sure of her exact position but she was wearing a massive big protective apron, opened a solid cabinet, took out the cannisters and then gave me a glass of water to help swallow the tablets, I'm thinking oh yeah, you want me to swallow things that you're wearing protective clothing whilst just handling. Really inspiring!!!

But all jokes aside -no problems - I was told to avoid very young children/babies/ pregnant women for about 2 weeks. So I just hung out at home for the 2 weeks and drank lots of water. I think to help flush things out of me and clean up my system a bit.

So now I'm on the eltroxine tablets, no problems - just get my TS blood levels checked by the doctor every few months - to make sure I'm balanced ok. I was on 100 mg eltroxine for a few years, but sometimes felt a bit low, nausea etc. so I'm up to 125 mg now. Seriously, don't worry about things - you're better off getting this treatment and once the levels are sorted, you will feel much better. But avoid hugging and kissing the little ones for a few weeks.

Good Luck, JUDES X

hazelhand

I am currently going through thyroid cancer, I've have 2 operations, the first was to remove a nodule and that half of the thyroid- results came back to show the nodule was cancer and so the second half was removed a week ago and I should be getting results of that in about 3 weeks, all going well I should be having radioactivte iodine treatment in dublin in about 8 weeks nothing confirmed yet, I would also be interested to hear from people that have gone through this. Happy to hear there shouldn't be any problems with future babies, I've one little girl so far... I was never on any tablets, since the second half of my thyroid was removed they put me on liothyrionne a t3. I don't know a whole lot about thyroid medication, I'm just hoping it or the radioactive iodine treatment won't affect me in a bad way long term. Good to hear from others that are going through or have been through it

Keea

Thanks for your experience Judes. I'm on neomercazole myself nearly 4 years at this stage. Haven't had any real problems with it but know its not meant for long term.
Hazelhand - sorry to hear you have thyroid cancer. Best of luck with your results. Hope everything goes well for you.
I suppose I shouldn't question things too much because I did meet with the consultant who deals with Radioactive iodine and he did say that everything would be ok with me taking it. As its coming nearer though, I am just thinking about it more and wondering if I'm doing the right thing...or should I have surgery instead!

tk123

Keea wrote: »

The other option is surgery but I don't want to take this route.

I had the surgery a year ago and it was grand! 2 of my grandparents died of cancer (one 6 months before I had the surgery) so I was really paranoid and wasn't taking the risk of the iodine no matter how tiny it was. Also my neck was pretty swollen so that was another factor too.

Anyhoos I had a cystic nodule on one side but then it got HUGE and spread all down into my chest and squashed my airway a good bit.. It also turned into an overactive hot nodule (my levels were up in the 80s) giving me hypertension, sharp pain when I took a deep breath/bent over, palpatations etc and the other side turned off.

The surgery itself was fine - I was in for 2 nights and had 1 side removed along with the inches that were wrapped up inside my chest so took about 5 hours. 3 weeks after the surgey my remaining half switched on and that was it - no more neomercazole and my bloods are fine! The only problem I had was my neck being stiff but it got better with time. Also I've developed asthma from all the airway compression but nothing an inhaler can't sort.

My history was:
- borderline levels so on neomercazol for 4 years
- got pi$$ed off with my rubbish GP never doing bloods but charging me full whack for repeat perscriptions :mad:
- switched GPs and they were shocked I'd never had an ultrasound so off I went
-ultrasound showed a nodule so referred to consultant
-(old skool) consultant sent me for a biospy - no probs and pretty much did nothing and watched it for 2 years
- old skool consultant retired :pac: and referred me to a brilliant new consultant who i saw the next month
- brilliant new consultant was puzzuled that the other one left it so long and was concerned about the side affects of being on neomercazole for 6 years and referred me to a surgeon
- saw the surgeon the next month (who I let examine my vocal chords because I didn't know that scope was going up my nose!!:pac::pac:) and had surgey 3 weeks after - he wanted to do it the next week but I had holidays booked lol
- 1 month after the surgey t levels perfect and apart from a stiff neck all good
- 1 year on no problems apart from needing the inhaler when my hayfever is bad or if the air is cold

ps pls excuse any spelling mistakes as I'm still getting used to this keyboard!!

StormWarrior

hazelhand wrote: »

I am currently going through thyroid cancer, I've have 2 operations, the first was to remove a nodule and that half of the thyroid- results came back to show the nodule was cancer and so the second half was removed a week ago and I should be getting results of that in about 3 weeks, all going well I should be having radioactivte iodine treatment in dublin in about 8 weeks nothing confirmed yet, I would also be interested to hear from people that have gone through this. Happy to hear there shouldn't be any problems with future babies, I've one little girl so far... I was never on any tablets, since the second half of my thyroid was removed they put me on liothyrionne a t3. I don't know a whole lot about thyroid medication, I'm just hoping it or the radioactive iodine treatment won't affect me in a bad way long term. Good to hear from others that are going through or have been through it

I had my thyroid removed after cancer. They suggested that I have the radioactive iodine, but told me that after thyroid cancer your thyroxine dose is kept high enough that it suppresses something that means the cancer won't come back anyway. So I did not have the radioactive iodine, and 8 years later I'm still alive.

dollydishmop

Hi Keea

I was initially given the choice (hyper/Grave's with large, toxic, multinodular goitre), and chose surgery.

But when my TED worsened, the choice was removed, and my only option was surgery.

However, when I had the choice...I chose surgery over RAI.

*My* reasons being, I just didn't want to voluntarily pump radioactive material into my body.
We also want to start a family ASAP, and my Endo recommended leaving it for 2 yrs after RAI, to be safe...I was 36 at the time, and didn't want to add another 2yrs on.
In my case I had a large goitre, which was encroaching on my windpipe (at the time of the op it had crushed my windpipe down to 9mm) and whilst RAI *might* stop my goitre growing, it wouldln't reduce its size.
Whereas, in my case, surgery would not only remove my troublesome thyroid gland completely, it would also remove my increasingly large and very unsightly goitre.
I was also told it may improve my TED...and I really think it has...but don't go back to the Opthalmologist until November for my next measurements, so won't know for sure until then. The TED symptoms are definitely improved, and I don't think they bulge out as much as before.

I had a total thyroidectomy on the last day of May, 5 weeks ago. And don't regret it at all. I'm now on complete thyroid replacement meds and my most recent bloods, only 5 weeks post-TT, came back with a TSH of 1.1 and FT4 of 20.7 the best they've been in 6 years of Hyper/Grave's hell.

However, the decision as to which one to go for is totally personal...and not everyone is in the same situation. My Endo, when I had the choice, drummed it in to me that it was my choice, that he could only advise, but for me to go away and do all the reasearch I could and weigh up my own pros & cons list.

Best of luck with whatever you choose

sammya

Hi Keea

Just came across this thread & thought I'll share my wife's experience. She had a Total Thyroidectomy done in 2003 & this was followed immediately by a Iodine theraphy. She is being monitored at St. Luke's and was given the go ahead to have our second child in 2008. She is scheduled for a second theraphy very soon. This is done because she is on high dose of eltroxine and the consultant is not happy with this as this will have long term side effects. We now have a 2 yr old daughter.