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Old 06-14-2008, 08:35 PM   #1
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radioactive iodine treatment?

Has anyone ever heard of or been through this treatment to shrink growths on thyroids? My Dr. mentioned it to me almost in passing, but I want to learn more about it as an alternative to surgery. Thanks!

 
Old 06-14-2008, 09:22 PM   #2
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Re: radioactive iodine treatment?

Anything that as radi in it (radioactive, radiation, etc.) you should avoid! It is going to have a lot more long term negative results and cause you more problems. Thyroid surgery isn't bad at all. You can ask just about anyone on here and they will tell you the surgery is a breeze, especially compared to most! I think 1-2 nights in hospital is the average now and a lot of them haven't even had to take prescription pain killers afterwards. My surgery was 10 years ago and I had other things that complicated the situation so I was in longer than that.

Good luck with everything!

Last edited by cardshark; 06-14-2008 at 09:28 PM.

 
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Old 06-15-2008, 05:26 AM   #3
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Re: radioactive iodine treatment?

I think in the old days, they even did rai for thyroid cancer and nodules instead of surgery, particularly in europe, but it's not a great option for nodules----first, it could kill portions of the thyroid, and not others, possibly making your thyroid work partially, and challenging to medicate.

Also, if there is cancer lurking somewhere, you won't know it, and you would want to know if it were there through pathology, and get as much of it out as possible surgically. You don't want leftover radioactive material mutating and spreading. The rai is used to destroy remnant thyroid tissue these days, but you wouldn't want to treat the entire thyroid that way.

The only way I've heard to shrink nodules without surgery, is to do it by suppressing tsh (possibly getting hyper), and that does not always work, but is something tried in those that need to avoid surgery.

But as cardshark says, it's really not a bad surgery at all---I would take it over RAI any day!

 
Old 06-15-2008, 11:18 AM   #4
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Re: radioactive iodine treatment?

The American Assoc. of Clinical Endocrinologists recommend irradiation over surgery for hyperthyroid. My endocrinologist agrees, and in fact I will be getting it done within the next couple of weeks. The sooner the better as far as I'm concerned because I'm going bald from methimazole and I can't take PTU. He told me that the idea is to kill the whole thyroid, and that RAI does a better job of that than surgery, not to mention that it's non-invasive and doesn't require anesthesia. Evidently there is no way to kill off just nodules with RAI though. I have to get rid of my thyroid completely because I had a Thyroid Storm, and once you've had one, it's very possible to have another. The endo doesn't want to take a chance. Heck, neither do I, it was not fun at all. They just don't give you a bunch of radioactive iodine and hope for the best though. First I had an ultrasound to look at any nodules. I have two, but they are in no way cancer or anything. Next I had an uptake scan. I took a small dose of radioactive iodine after a week of a low iodine diet and no thyroid medication. The next day they did a scan of my thyroid to see how much iodine it took in. They did two scans of my thyroid with a scan of a thigh in-between for comparison. This will tell them how much radioactive iodine it will take to kill my thyroid. They'll check at some later point to make sure my thyroid is dead and if by some small chance it's not, they'll do the radioactive iodine again. RAI is also the preferred veterinary treatment. Cats are especially prone to thyroid disease. They use RAI and then keep them in a lead-lined room for a week or so. It's often referred to as the "glow-in-the-dark kitty room". As for me personally, I'd much rather not have surgery if I don't have to. No matter how simple the procedure, or how short the recovery time, it's still going under anesthesia and it still involves some kind of cutting. Research all the options for your particular situation, talk to your endo, get a second or third opinion if you need them. That's what's great about this site; lots of different experiences and lots of information.

 
Old 06-15-2008, 12:47 PM   #5
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Re: radioactive iodine treatment?

Quote:
Originally Posted by cardshark View Post
Anything that as radi in it (radioactive, radiation, etc.) you should avoid! It is going to have a lot more long term negative results and cause you more problems. Thyroid surgery isn't bad at all. You can ask just about anyone on here and they will tell you the surgery is a breeze, especially compared to most! I think 1-2 nights in hospital is the average now and a lot of them haven't even had to take prescription pain killers afterwards. My surgery was 10 years ago and I had other things that complicated the situation so I was in longer than that.

Good luck with everything!
lol hi kat here ive heard they can do thyroid surgery awake now and day surgery and also thats cos they are able to hera if your vocal chords are being severed , i would very much like to get mine out , how much do you reckon it is on the nhs love katxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 
Old 06-16-2008, 09:49 AM   #6
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Re: radioactive iodine treatment?

IMO and my families prefer to treat the thyroid with meds and then surgery. We had a few RAIs and they were not complete in killing off the thyroid. After one Aunt had 2 RAIs in 2 years and then the MD wanted to do a third.. she had the TT anyway. It is up to you and your MD after all, but check on follow up care.. chances of thyroid remaining active.. chance of needing a TT for cancer/complications after the fact and more. Do not go into a surgery or RAI before you have all your questions answered and are sure.

Also look into the complications RAI may have on other systems in your body. My 2 Aunts that had RAIs have more and more cysts developing in the breasts than the rest of us. Luckily all are benign, but one Endo muttered something about it being a side effect of RAI. I haven't dug into it personally, but you should ask about ALL side effects and possibilities. Never go in blind.

MG
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Old 06-16-2008, 11:16 AM   #7
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Re: radioactive iodine treatment?

I'm no fan of surgery, but I would opt for it over RAI in a heartbeat. Only thyroid cancer would be enough for me to accept RAI.

Here are some facts I easily found within about 1 hour of search time:

RAI is a known trigger of the autoimmune response responsible for fibromyalgia, Sjogren's syndrome and Graves' disease, among others. (To me, that's no trade-off for goiter shrinkage.)

RAI can cause permanent damage to the salivary glands. It can also damage the parathyroids, at a rate higher than surgery. The rate of damage to the parathyroids and laryngeal nerve during surgery is between 1-2%. Very experienced surgeons, who perform at least 100 operations a year, have the lowest complication rates.

Because uptake of RAI may be reduced in patients with multinodular goiters, especially nontoxic ones, the need for higher or multiple doses of RAI make it a poor treatment in those cases. Higher exposures may result in leukemia or secondary malignancies.

Surgery is the treatment for choice large, multinodular goiters that exert pressure on surrounding structures and/or are cosmetically unacceptable.

The gland and nodules can regrow post-RAI.

Surgery is the preferred treatment for women who plan to eventually become pregnant.

There is a slight but significant increase in thyroid and small bowel cancer in mortality studies. Patients who develop cancer but do not die from it aren't included in these studies so the true long-term effects remain unknown.

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It boils down to the degree of risk you find acceptable for yourself. I wish you luck arriving at the best decision for yourself.

 
Old 06-16-2008, 11:43 AM   #8
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Re: radioactive iodine treatment?

THANK-YOU Midwest!

Great Information there. I scanned over some similar information myself, but didn't cross check and reference it. Definitely makes you want to dig into it deeper.

MG
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Old 06-16-2008, 02:31 PM   #9
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Re: radioactive iodine treatment?

wow
thats a big eye opener ive also read a little bit but knew nothing of the studies after the surgery or rai, good on you midwest , i have lots of cysts on my thyroid don't know if its the same as multi nodular?? probably and i get the aligator goiter as i call it coming and going and it strangles, if i had surgery the option i would want is to have it awake with out general anesthesia , maybe they use spinals or epidurals that sends shivers down my spine yuk!!!!!! see thats the only good thing about the rai no surgery or scary procedures that makes me have to be honest with you girls bad panic attacks xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
later katxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxx

Last edited by pursie; 06-16-2008 at 02:33 PM.

 
Old 06-16-2008, 04:31 PM   #10
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Re: radioactive iodine treatment?

doctors PUSH RAI because it's less costly to the insurance companies, they NEVER tell you these side effects or studies done. People who are pushed into this should go to their doctors with these studies in hand, or switch doctors.What patients don't know is doctors will start you off on too high a dose of anti thyroid meds, which can cause side effects which they tell you is caused by the med, which it CAN be when taken at too high a dose. I've heard of docs starting patients off at 60 mgs dosage,(Tapazole) that's way too much!

 
Old 06-16-2008, 10:25 PM   #11
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Re: radioactive iodine treatment?

Wow, SUCH great information, ladies! TY very much!

1. I DO have multiple nodules, which is why they're doing an ulstrasound-guided biopsy on Friday. So maybe RAI isn't for me just for that reason.

2. The whole reason we found out about the thyroid problems is because I went to the OB to get back on fertility drugs so we can try for miracle baby #2. So thanks for the info on the RAI, Midwest. Doesn't sound like a great option for me.

3. I'm a little squeemish about surgery, ESPECIALLY the small chance of vocal complications, but I would feel better just knowing it was GONE. RAI seems more chancy to me.

I talked to a friend tonight that had a huge goiter. It had to be biopsied every year for TEN years before she finally told the Dr. to take it out. Didn't ever develop cancer cells, but when they took it out, it had developed "feelers" which I guess are indicators that cancer may have been on its way. Ugh, I do NOT want to spend 10 years just waiting to see if cancer develops.

Speaking of surgery, how do I know I have a good one? How can I find a surgeon that's done LOTS of thyroid surgeries? I'm at a loss here...

Thanks again, ladies! Your info and advice is SO helpful!

 
Old 06-17-2008, 12:58 AM   #12
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Re: radioactive iodine treatment?

uurrg yeah d rose, that is pretty ****** a deal , just hanging on , im not sure if mine is multi but i do have cysts , im a baby and wanted to take the easy option and i defo would have till i read about mid west, and i thought it was people with graves that had more of the nodule not the hashis so much?? i know both can but the tt and rai must be more for the hyper people i wonder why my thyroid is so horrible and mean to me it strangles me and i also dont want to spend the rest of my days worring about silly old mr thyroid he can be neuked or yanked and i hope sooner rather than later, you have to have very good grounds in the uk as you know its free, lately my dr has been very very good to me thankfully maybe its time to ask love katxxxxxxxxxxxxxxxxx

 
Old 06-17-2008, 10:05 PM   #13
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Re: radioactive iodine treatment?

Sorry, Pursie, the feeling of being strangled must be SO hard to deal with. I'll let you know what they say after the biopsy on Friday. Maybe we can brave the surgery together!

 
Old 06-18-2008, 01:41 AM   #14
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Re: radioactive iodine treatment?

d rose i would love to go with you to surgery it would be very nice and not as scary w e can hold hands , i wonder why i didnt get offered the biopsy on the cysts maybe they have to be a certain size???mm why do we have to get the bad thryoids , i thought it was more a graves thing mind i have a boderline positive for it?????? and mainly hashis however that is possible take care keep in touch love katxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxx

 
Old 06-18-2008, 06:29 AM   #15
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Re: radioactive iodine treatment?

Pursie,

Standard Operating procedure is that when you have a cyst or nodule of approximately 1 cm in any dimension it should be biopsied. You might want to request a consult with an ENT for a second opinion given the breathing restrictions you are suffering. It may be that the MD you are seeing doesn't feel requesting a biopsy is in his job description. *snort*

MG
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