# RAI or Surgery - Multinodular Goiter/Hyperthyroidism



## cathyl111 (Oct 30, 2011)

I have a multinodular goiter on one side which was followed by an endo for many years. About a year and a half ago, my bloodwork finally showed hyperthyroidism. I had the uptake scan done which showed a hyperfunctioning nodule on the right side with suppression on the left lobe. The uptake was 36% (I was told normal was 10-35%).

My endo put me on 10 mg daily of methimazole. Bloodwork every couple of months followed, and he lowered dose to 5 mg as bloodwork showed I was in normal levels. He is not happy I am on methimazole for so long. However, I can't decide what I should do.

Had an appointment with a surgeon who suggested removing half of the thyroid. He feels after the surgery the suppressed side will start functioning, and I probably could avoid medication.

If I have the RAI, it could destroy even the suppressed side, and I would have to be on medication for hypothyroidism or I could get lucky and just the overfunctioning side could be destroyed in a perfect scenario.

I know the surgery seems to make more sense, but who wants to have surgery.

However, I must make a decision. I am starting to be worried about being on the methimazole for so long. In addition, I am starting to catch colds every other week or two. Not sure if it related.

One of the problems I am having is I started menopause around the same time the thyroid became hyper. Many of the symptoms are the same.

I have an appointment with the endo tomorrow.

Thoughts/Suggestions would be greatly appreciated.


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## joplin1975 (Jul 21, 2011)

It seems to me that there are a lot of variables/unknowns with the RAI compared to surgery. Not to mention exposing your body to radioactive material. I can appreciate wanting to avoid surgery, but it was relatively easy, as far as surgeries go.

I didn't have your issues but I did go through both surgery & RAI...I think if I were in your shoes I would opt for the surgery.


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## cathyl111 (Oct 30, 2011)

Thanks Joplin.

My initial thought was for the surgery as I would prefer to avoid the chemicals.

However, I am starting to get nervous.

My endo said most people actually choose the RAI. I think most people think it is easier. However, as you said there can be lots of problems with side effects.

Has anyone heard or know anything about another option which I have read a little about. I have read that they can inject alcohol into the nodules. A few books on hyperthyroidism and the thyroid I have gotten mention this. However, I don't think it is widely practiced.


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## Andros (Aug 26, 2009)

cathyl111 said:


> I have a multinodular goiter on one side which was followed by an endo for many years. About a year and a half ago, my bloodwork finally showed hyperthyroidism. I had the uptake scan done which showed a hyperfunctioning nodule on the right side with suppression on the left lobe. The uptake was 36% (I was told normal was 10-35%).
> 
> My endo put me on 10 mg daily of methimazole. Bloodwork every couple of months followed, and he lowered dose to 5 mg as bloodwork showed I was in normal levels. He is not happy I am on methimazole for so long. However, I can't decide what I should do.
> 
> ...


Yes; your liver enzymes could be greatly affected with long term use of anti-thyroid meds.

Also, you have to stop and ask yourself, "Do I really feel good most of the time, if not all the time?"

This is a very hard decision for you to make because it is a permanent decision no matter which way you go.

I do know that I personally would chose the surgery. However, there are many here who had partial thyroidectomy and years later had to have the other side removed.

You will get plenty of input from our posters; you can be sure of that. Lots of experience around here.


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## cathyl111 (Oct 30, 2011)

To tell you the truth, I felt better when I was not on the methimazole. I feel like I am constantly catching a cold while on this medication.

Going to the endo tomorrow with lots of questions. I really want to find out more about the alcohol ablation.


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## Andros (Aug 26, 2009)

cathyl111 said:


> To tell you the truth, I felt better when I was not on the methimazole. I fell like I am constantly catching a cold while on this medication.
> 
> Going to the endo tomorrow with lots of questions. I really want to find out more about the alcohol ablation.


I could not agree more; I was horribly ill on the Methimazole myself.

Let us know what you find out about the alcohol ablation.


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## Octavia (Aug 1, 2011)

cathyl111 said:


> Thanks Joplin.
> 
> My endo said most people actually choose the RAI. I think most people think it is easier. However, as you said there can be lots of problems with side effects.


Sounds like your endo deals with this at least fairly frequently. What percentage of those who choose RAI end up needing to take replacement hormone? My understanding is that the RAI would have to be EXACTLY right in order to get the EXACT results that would enable you to no need meds, and that is pretty rare. On the other hand, if you get a partial thyroidectomy, there's no certainty about whether the remaining half will work as you need it to, to avoid meds. So many unknowns...

I am curious to hear what you find out about the alcohol method, too.

Best wishes for your appointment.


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## cathyl111 (Oct 30, 2011)

I don't think there are any guarantees either way.

Just got off the phone with a friend who had thyroid cancer (which I don't have) and she said that after her surgery she had to follow up with the RAI, and she said she really didn't have any of the side effects. It took the endo a while to get her balanced, but she did really well. I am seeing her endo because of her referral.

You just don't know. As has been mentioned, I could have the surgery and have to still take thyroid medicine if the other half of the thyroid does not function properly or have to eventually have the other half removed also.

I have only read a little about the alcohol ablation for nodules. I wonder why so little is discussed about that option. The only problem I might have is I think that might just be for cystic nodules. I have both cystic and solid.

I have one other question regarding RAI. Is the dose given lower if they are just trying to kill off one side or if it is not after cancer surgery. I am assuming if it is a lower dose, the side effects would be less.

Like everyone who has been through thyroid issues - just want to feel normal. When I was mildly hyper before the medication (methimazole), I actually felt fine.


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## Ruth (Oct 30, 2011)

i am in the same situation as you are, my daughter had half her thryoid out..it was enlarged and then later , cancer showed up in the other half and it had to be removed..two operations. i am looking at the options too and think radiation is much less invasive. i am going for tests next week, i had a needle biopsy and it was negative but he didnt take one from all the nodes...lazy i suppose. this is an interesting question and i am going to follow . thank you for writing.


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## nodakmom (Oct 15, 2011)

Is RAI really any less invasive? I don't mean that in a condescending way, it's a true question. I'm thinking with surgery it was an overnight stay (mine was TT, a PT may be treated outpatient even) and I I took the next week off although I felt well enough to go back to work by that Wednesday. With RAI, as I understand it so far, you still end up having to take some time off, and you have to make a point to distance yourself from everyone for a period of time. Half a dozen of one, six of another? LOL


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## cathyl111 (Oct 30, 2011)

I think this is why I am having such a tough time deciding. Each treatment has its positives and negatives.

I have had surgery for other issues before, and I really become nauseous after. In addition, there are always risks with anesthesia. This is what is holding me back. At first, I thought I would definitely have the surgery. Now I am not so sure.

I have a question for the members of the board. My uptake scan is from August 2010. It showed 36% (just out of normal range). Since this result is just over a year old, do you think I will have to have this test again if I decide to have the RAI so they will know how much to use. Would my results still be good?


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## Ruth (Oct 30, 2011)

guess only the doctor know about invasive but doesn't it just go to the thyroid itself? i have a heart condition that makes surgery even more risky and the bleeding concerns me also i have the thryoid pressing against my windpipe..i had tests last year and the doctor in london wanted to take it out only because my daughter had cancer in hers...i dont see where that should concern my thryoid. she was around 46 and is having quite a time with her medication..she is miserable. I never thought i would end up with this problem. thanks for all the letters..most interesting and informative.


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## Ruth (Oct 30, 2011)

Cathy...you have the same problem i have with surgery..many years ago when i had a tubal ligation...i was soooo sick to my stomach , lost weight and it was hard on my body .. as of now, i don't have options , will wait and see what they say..


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## cathyl111 (Oct 30, 2011)

Thanks to everyone for all their insights. Wish I found this board earlier.


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## nodakmom (Oct 15, 2011)

cathyl111 said:


> I think this is why I am having such a tough time deciding. Each treatment has its positives and negatives.
> 
> I have had surgery for other issues before, and I really become nauseous after. In addition, there are always risks with anesthesia. This is what is holding me back. At first, I thought I would definitely have the surgery. Now I am not so sure.
> 
> I have a question for the members of the board. My uptake scan is from August 2010. It showed 36% (just out of normal range). Since this result is just over a year old, do you think I will have to have this test again if I decide to have the RAI so they will know how much to use. Would my results still be good?


I don't think it would be out of order to ask for another scan, alot can change in a year.

As far as the nausea, since you are aware you do have that issue tell them. I was instructed by my nurse after my TT that if I ever have surgery again to let them know as they can change/add something with the anesthesia meds to help with that.


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## Andros (Aug 26, 2009)

cathyl111 said:


> I don't think there are any guarantees either way.
> 
> Just got off the phone with a friend who had thyroid cancer (which I don't have) and she said that after her surgery she had to follow up with the RAI, and she said she really didn't have any of the side effects. It took the endo a while to get her balanced, but she did really well. I am seeing her endo because of her referral.
> 
> ...


They can't just kill off one side; the entire gland uptakes the radioactive iodine.

You had FNA on that solid nodule? I must have missed that in your original post? Solid is "iffable!"


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## cathyl111 (Oct 30, 2011)

Just came back from the endo. (Are we allowed to say where we go on the board?)

Andros - I have a multinodular goiter that is both solid and cystic. I had a FNA to test for cancer before my bloodwork was even showing hyperthyroidism years ago. Bloodwork just turned hyper about a year ago.

Had the Uptake scan about a year ago which showed a hyperfunctioning nodule on the right side with suppression on the left lobe. Uptake was 36%. The endo feels there is a chance that because the left lobe is suppressed, it will not be killed off. No guarantees. That is the advantage of the surgery.

I asked about side effects for RAI. He was not overly concerned. He said I would receive less radioactive iodine than someone who is getting RAI after cancer surgery. Again - no guarantees.


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## Andros (Aug 26, 2009)

cathyl111 said:


> I think this is why I am having such a tough time deciding. Each treatment has its positives and negatives.
> 
> I have had surgery for other issues before, and I really become nauseous after. In addition, there are always risks with anesthesia. This is what is holding me back. At first, I thought I would definitely have the surgery. Now I am not so sure.
> 
> I have a question for the members of the board. My uptake scan is from August 2010. It showed 36% (just out of normal range). Since this result is just over a year old, do you think I will have to have this test again if I decide to have the RAI so they will know how much to use. Would my results still be good?


Were you on an iodine free diet before this RAIU? That can skew the uptake.

Maybe you would be wise to go iodine free and get another? Ask the doc and see what he/she has to say about this. I would like to know also.


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## cathyl111 (Oct 30, 2011)

Was not on an iodine free diet before last uptake scan. Will definitely ask about that.

Endo suggested I definitely get another scan as the other scan is a year old.


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## Andros (Aug 26, 2009)

cathyl111 said:


> Was not on an iodine free diet before last uptake scan. Will definitely ask about that.
> 
> Endo suggested I definitely get another scan as the other scan is a year old.


Good and please inquire about the iodine because I am pretty sure it messes up the uptake.

I am worried for you. I never like to hear solid. If they don't get the right cells on FNA, it is easy to mess that up also.


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## katbid23 (Oct 20, 2010)

Cathy,
Keep in mind that if there is any chance of one of those nodules being cancer (especially the solid one), surgery would be the best option. If you choose RAI instead of surgery, you may never know if you have cancer until it spreads to the other lobe or somewhere else. My endo did not give me an option of RAI. He said that being hyperthyroid and having multiple nodules (one being solid and cold) were good indicators of cancer. He said RAI to ablate the thyroid instead of opting for TT would be a very bad mistake becuase the RAI will kill the thyroid (hopefully the only part they want to kill) and it will turn it into a mess where most surgeons would not even think about performing a TT after that. The surgery was a breeze for the most part. The 148mci of RAI I did following that wasn't too bad either. The worse part was the isolation. But anyway, at least I found out for sure that I had cancer and it was treated. Good luck to you and do what you feel is best for you.


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## Andros (Aug 26, 2009)

katbid23 said:


> Cathy,
> Keep in mind that if there is any chance of one of those nodules being cancer (especially the solid one), surgery would be the best option. If you choose RAI instead of surgery, you may never know if you have cancer until it spreads to the other lobe or somewhere else. My endo did not give me an option of RAI. He said that being hyperthyroid and having multiple nodules (one being solid and cold) were good indicators of cancer. He said RAI to ablate the thyroid instead of opting for TT would be a very bad mistake becuase the RAI will kill the thyroid (hopefully the only part they want to kill) and it will turn it into a mess where most surgeons would not even think about performing a TT after that. The surgery was a breeze for the most part. The 150mci of RAI I did following that wasn't too bad either. The worse part was the isolation. But anyway, at least I found out for sure that I had cancer and it was treated. Good luck to you and do what you feel is best for you.


Thank you for sharing your experience; you are saving lives. I am sure of this!!


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## katbid23 (Oct 20, 2010)

My endo told me that the only way to know if you have thyroid cancer is to have the thyroid (or at lest part of it) removed. With an FNA they may take several samples of the nodule but could still miss the one little area that may have cancer cells. My endo did not even do an FNA on my nodules and one of them at the time was 2cm. 
I was very unsure of surgery at the time as well and I asked him why he wouldn't just do the RAI to kill the thyroid. I asked why he had to be so dramatic and aggressive, and that is when he explained to me what RAI does to the thyroid and that if the nodules were cancerous, I would be in a lot of trouble down the line. 
I am no expert and I usually only reply to posts that appear to be similiar to my situation. Therfore, I give my experience and relay what my team of doctors have told me. This is not to say that mine are right and yours are wrong, but it at least gives you a few more questions that you can either ask or do research on. Your situation appears to be very similiar to mine. And I can honestly say that your doctor does not sound like she is being aggressive enough with your case. That is only my opinion based on the info you have provided.


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## cathyl111 (Oct 30, 2011)

I decided to get a second opinion. I really think it is time for a new perspective. I have been going to the same endo for about 10 years.

Will update.


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## Andros (Aug 26, 2009)

cathyl111 said:


> I decided to get a second opinion. I really think it is time for a new perspective. I have been going to the same endo for about 10 years.
> 
> Will update.


Hope you have a good experience and will be interested in hearing from you when you can.


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## cathyl111 (Oct 30, 2011)

Finally had another uptake and scan (previous one was about a year and a half ago). Results were about the same. Multinodular goiter on right side.

My choices are RAI and partial thyroidectomy.

Going to set up surgical consult.

Has anyone had the partial thyroidectomy and had their other thyroid gland function normally; therefore avoiding drugs. This is the scenario the endo is suggesting. My other gland is suppressed at this time.

Has anyone had RAI and had the suppressed gland not be killed off. I have been told the other will most likely eventually be killed off over time.

Lastly, has anyone had a partial thyroidectomy under local anesthesia? Have had bad reactions to general. I have read online that this surgery can be done under local with sedation. I actually had a benign breast cyst removed under local because I did not want general. No problems.

Any insights would be appreciated.


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## Octavia (Aug 1, 2011)

RAI is not selective about what tissue it kills off. If you want to increase your odds of not needing thyroid replacement, surgery is the best option, but there's no promise with it.

My doctor's original plan for me was just a partial thyroidectomy, with the hopes of not needing medication. It did not work out that way for me because my pathology showed cancer, but that was the plan, anyway.

When you say "my other gland is suppressed at this time" do you mean one lobe of your thyroid is suppressed (the lobe that does not show the goiter)? I don't have a lot of confidence in that statement...how would they know? (Maybe based on the RAIU???) And how do they know it will work again once the goiter side is removed? Lots of questions around that hypothesis.

Regarding the anesthesia, what have your bad experiences been? I had two surgeries, three weeks apart, and they were as different as night and day because of the anesthesia. My first surgery was "standard" as far as anestheia goes, but I reacted terribly to it for 3 days (vomiting every time I would move, stand up, walk to the bathroom, etc.). I told them about that many times when planning for my second surgery, so they approached the anesthesia completely differently, and I truly felt great after that one. Night and day, I'm telling you!

Honestly, I can't imagine being awake while someone cut into my neck for 3 hours, but hey, to each his/her own. It's completely different from breast cyst surgery, IMHO.


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## cathyl111 (Oct 30, 2011)

Octavia - Thanks for the prompt reply.

Regarding the suppression. I believe they are telling me this from the uptake and scan. The side with the goiter is hyper and the other gland is suppressed. However, I will confirm that. Good point.

The real problem with making the decision is because there are no absolutes. I could go through the surgery and still require medicine.

I have had surgery 4 times previously, and even with telling them that I get very sick (vomitting), it happens every time.


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## Octavia (Aug 1, 2011)

cathyl111 said:


> The real problem with making the decision is because there are no absolutes. I could go through the surgery and still require medicine.
> 
> I have had surgery 4 times previously, and even with telling them that I get very sick (vomitting), it happens every time.


You are absolutely correct about no absolutes...it's a crapshoot. Plus, have they completely ruled out cancer of the thyroid? If not, you may wish to weigh that into your decision as well, and consider a total thyroidectomy to eliminate the risk of needing a second surgery after pathology comes back (like what I had to do), especially given your reaction to anesthesia. That second surgery is like adding insult to injury!

That stinks about getting sick despite telling them. I wish I knew what the anesthesiologist did differently for my second surgery...whatever it was, it was a miracle drug! I probably went overboard in telling them about how sick I got - I think I mentioned it at least 19 times. (Okay, maybe that's an exaggeration, but you get the idea.)

We had a poster here several months ago who talked about wanting just a local anesthetic. I'm not sure what the outcome was, or if that was the option they chose...would be interesting to know.


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## cathyl111 (Oct 30, 2011)

Just an update.

Went for surgical consult yesterday. I think I am starting to agree with a lot of you that in my case a partial thyroidectomy might be a better option than RAI.

The surgeon I saw does only thyroid, parathyroid endocrine surgery. I was told that was the way to go. His website mentions he does over 400 a year.

While both the endos I saw thought either the surgery or RAI were good options for me, he clearly felt the surgery was the way to go. (Keeping in mind, he is a surgeon). He did not understand why I would want to destroy my entire thyroid when the other lobe would almost certainly function properly and I could most likely avoid meds.

He also checked my vocal chords yesterday for damage. Did anyone else have this beforehand? He thought my voice sounded off. I said it was just the way I sound naturally. Vocal chords turned out to be fine, but I do have a sore throat from the scope.

He also mentioned the surgery would take only about an hour and I would go home that day barring complications. I know many of you have mentioned much longer surgery times and that you stayed overnight. Has anyone gone home that day and had such a short surgery time? Possibly this is due to it being a partial.

Any thoughts/input would be appreciated.


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## Octavia (Aug 1, 2011)

My partial was about 3 hours, then my completion was about 4 hours because the doc wanted to take a good look around after my cancer diagnosis. (The surgeries were 3 weeks apart.) I stayed overnight both times so they could keep an eye on my calcium levels. Mind you...this was at a teaching hospital, so things take longer as the new surgeons learn their craft.

Sounds like you have a very experienced surgeon. Were you comfortable with him? What he is saying about trying to keep the other lobe intact makes sense to me.

Yes, I did have my laryngeal nerves/vocal cords/chords examined before (and after, a few times) surgery. Did you get that great tasting (NOT!) numbing liquid through your nose first? That numbing liquid was so bad for me that I refused it for subsequent exams, and just let him put the camera in without it...which also was not pleasant.


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## cathyl111 (Oct 30, 2011)

I did have the numbing spray. You are correct - not pleasant. I joked with him that this exam will probably be worse than the surgery.

I was just curious about the one hour time. Seemed so much less than what I have heard.


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## Octavia (Aug 1, 2011)

cathyl111 said:


> I was just curious about the one hour time. Seemed so much less than what I have heard.


Yes, one hour does sound fast to me. Interested to hear from others.


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## joplin1975 (Jul 21, 2011)

I think one hour tends to be on the lower end of the "average" scale, but that's not a bad thing. If he does lots of them, I bet he's more efficient than most. (FWIW, I had a total with a central neck dissection and mine was ~3 1/2 hours). And he may just be referring to the time they make the incision until the time the close you up -- there's lots of prep beforehand and you'll be in recovery for a while, too.


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## cathyl111 (Oct 30, 2011)

I am thinking that it does not include prep. I was assuming it was actual time of the surgery.

His surgery practice is only thyroid surgery. Plus, it is only the removal of the right thyroid as I understand it.


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## cathyl111 (Oct 30, 2011)

Had to go back on methimazole before partial thyroidectomy. I have been back on it only 1 day, and I have a rash already. I got this when I was on this medication before. A line of red dots. Did anyone else ever get this?

In other bad news - I found out my portion of the surgery is $5500. My husband and I are self-employed, and we purchase our own insurance. We have a high deductible and 30% copay. I have a son in college for another year and a half. I am considering holding off on the surgery for a while until those payments are done. How long do you think it is safe to stay on this medication. I was on it previously for about 9 months and then stopped taking it because I thought I might to RAI. I have a surgery date set, but after I found out about the $5500, I am not thrilled. Thoughts - Suggestions?


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## Octavia (Aug 1, 2011)

Ouch. I can see how that would make this a difficult decision for you.

The only thing I can think of is to call the hospital where the surgery will be done and ask about assistance or payment plans. At least with that information, you can make a better-informed decision.


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