# Life's first major curveball



## bluemoonguy (Apr 22, 2012)

Hey everyone. I suppose I should introduce myself in the newbie thread. I'll get around to that after this, I think. 

I've already posted this topic up on the Coalition for Better Thyroid Care (on facebook) a few moments ago, but I'd love to get as much feedback on this as possible. Please let me know if you could shed some light on this! Here's what I posted (sorry in advance for the long post):

Last December I noticed I had a lump in my throat and had it checked out. After a biopsy and ultrasound it was determined that I had Papillary Carcinoma.

At the time, the word 'cancer' frightened the daylights out of me. The surgeon who performed the biopsy stated that it was conclusive, so I didn't bother getting a second opinion (should I have?). I suppose there's no turning back at this point. But, the biopsy of my thyroid after the thyroidectomy showed, I believe, a 4cm cancerous nodule in my thyroid. I'm told this was very large, so I felt a bit better about taking action quickly.

Luckily for me, the lump in my throat, a cyst, developed quickly and lit a flame under my butt to get this all taken care of as fast as possible. I'm told that the cancer had started to spread, but didn't make it very far. Out of 14 lymph nodes extracted from my neck, there were only signs of spread to one of them, and even then the spread of cancer was in the early stages (there were signs of calcification in the one lymph node. And it took 2 passes on the node to even find the calcification).

I've already had a full body scan and taken the I-131 radiation pill in March (isolation was a BLAST). I've had a check-up with my endocrinologist last week. I had some blood/lab work done (still waiting on the results), but something that alarmed and annoyed me in my recent visit was the fact that she said I'll need another full body scan and possibly need another round of I-131 treatment. This was never mentioned to me before the visit, which is what, I guess, annoyed me the most. To top this off, I was told that the results of my first body scan looked excellent. They couldn't find any traces of cancer in my body, but the I-131 was still a necessary step to ensure that the cancer gets completely eradicated, even at a microscopic level. So, if they couldn't find anything in the full body scan and I took the I-131 pill, is it -really- that necessary to have another round of I-131 treatment?

I asked if this was common for thyroid cancer patients and she told me that it basically varied from patient to patient. She also commented on the fact that I actually had 3 lobes in my thyroid, which apparently puts me at a higher risk than other thyroid cancer patients for a relapse (I guess?).

I basically want to know if any of the rest of you have had to have two (or more) full body scans and I-131 treatments when dealing with thyroid cancer. Should I seek a second opinion this time around?

Honestly, I despise dealing with the doctors I have had to thus far. They all feel the need to rush me and make me feel like what they're recommending is the absolute right thing to do. I'm generally non-confrontational, but I'm getting to the point where I'm feeling like I'm being pushed around a bit without being given all of the facts and full disclosure on my test results.

If you have a moment, please share your experiences! I really want to make sure I don't pump any more radiation into my body than is necessary.


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## joplin1975 (Jul 21, 2011)

I had pap cancer as well. Three rumors on the left side - the largest measuring 3.2cms, the other two around 2cms, three micro carcinomas on the left side, and invasion into 3 lymph nodes.

So, first things first...you should have whole body scans for five years after treatment. So, yes, that's totally normal.

I had 100millicurries for a therapy dose. The doctor wanted to go with 150, but my state requires in patient hospitalization for any dose above 100. So, the expectation is that I'll need another round in September. Is it normal? It really depends on the person, just like they told you. These cancer cells aren't aggressive (thankfully), but they at sneaky and can travel through out your body. Just because you were clear initially doesn't mean you are clear permanently.

My thought is really just to roll with the punches. If I need it, I do. If not, well, fantastic!

Welcome to the boards!


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## webster2 (May 19, 2011)

Welcome, I am suposed to have one a year for the next 3-5 depending.


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## bluemoonguy (Apr 22, 2012)

Thanks for the welcome, Joplin and Webster! And thank you for taking the time to read my ridiculously long post.

I'm just glad to know that I'm not alone in going through these treatments. I suppose I was naive to think that I'd only need one radiation treatment (or maybe just too hopeful that I'd never need to take another RAI anytime soon). My surgeon did warn me months ago before I had been diagnosed with papillary carcinoma that if I did have thyroid cancer that it would be very treatable, but definitely a bit a of a hassle. It will be a life-long thing that I'll have to monitor. I suppose I'll just have to accept that and deal with it.

Anyway, I'll roll with the punches, as you've suggested Joplin, for the mean time. I suppose I don't have a choice either way. Again, I just wanted to make sure that if I had to, I'd seek a second opinion on this. But it does sound like multiple body scans and RAI treatments are common. It just would have been nice if my endocrinologist explained this to me right off the bat.


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## joplin1975 (Jul 21, 2011)

Oh, yeah, the lack of a full and complete explanation has been annoying...this board has been spectacular.

One other thing that I didn't mention...am I correctly assuming you are male? (Basing that on your screen name) As you probably already know, papillary cancer is more common in women than in men. The prognosis, to my understanding, doesn't change substantially, but I am under the impression that the standard of care if to be a touch more aggressive in men than in women. It *might* (doing a lot of guessing here) be why they are already thinking/talking about RAI Round Two for you, whereas for many of us female patients, it's more of a "let's see what the scan says" kind of a thing.


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## Andros (Aug 26, 2009)

bluemoonguy said:


> Hey everyone. I suppose I should introduce myself in the newbie thread. I'll get around to that after this, I think.
> 
> I've already posted this topic up on the Coalition for Better Thyroid Care (on facebook) a few moments ago, but I'd love to get as much feedback on this as possible. Please let me know if you could shed some light on this! Here's what I posted (sorry in advance for the long post):
> 
> ...












We have a lot of experienced cancer survivors here who I know will step up to the plate on your behalf.

I am truly sorry you have had to go through this but thank the "lucky stars" that it was found and medical intervention has taken place.

On the long haul, you will totally recover and live a quality of life. Be good to yourself. Eat properly, exercise, get plenty of sleep when your body tells you to do that. The body heal majorly during sleep.


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## Octavia (Aug 1, 2011)

Mine was a 3.2 cm tumor, with no spread to lymph nodes. After total thyroidectomy, I received 100 millicuries I-131, followed by a full body scan. Now, 12 months later (last week), I had my annual scan, which came out clean...so no Round 2 I-131 treatment for me this year. I'll have another scan in another year, and we'll see what that shows. If it shows a recurrence, I'll have another round of I-131.

I agree with the lack of information from docs. It's frustrating. And my oncologist (after telling me next to nothing about my diagnosis and prognosis) had the nerve to say "Now, you're not going to go out on the internet to look for information, are you?" Oh, of course, not, doc!


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## bluemoonguy (Apr 22, 2012)

Octavia said:


> ...my oncologist (after telling me next to nothing about my diagnosis and prognosis) had the nerve to say "Now, you're not going to go out on the internet to look for information, are you?" Oh, of course, not, doc!


Wow, are you serious?! That is extremely disturbing. Look, I understand why doctors get short with people like us who feel the desire to do their homework on the internet, but to actually discourage you from going on the internet to find out more information about YOUR body? That's pretty appalling, really. The only situation I could see staying off the computer benefiting someone is if they have an extreme case of anxiety or is a hypochondriac and get freaked out by all of the information that's available (I have to admit, it's easy to scare yourself when you get some weird symptom and start combing the internet for solutions).

Regardless, I'm going to do my homework, especially if I feel weird in a situation or that I'm not going in the right direction with treatment, etc.

Octavia, I meant to comment in the other thread you started up. I heard about your body scan results, and I'm very happy for you! I hope I get the same results after my next scan.

I did have another question for you all... during your isolation, did you stay at home or go elsewhere? What precautions did you take while being in isolation? I basically evicted my mom from her home for a week (since I'm living with my brother, sister-in-law, and 2 year old nephew at the moment) and stayed locked up in her bedroom with an air mattress and my laptop. That was about it. After my isolation, I cleaned her bathroom (without bleach, of course) and helped her move all of her stuff back into her room.

I find it incredibly annoying that at least here in Texas, they no longer admit patients into the hospital during isolation. And, yet, they tell you that you shouldn't stay in a hotel because of spreading radiation to others (yet it's okay to potentially spread radiation to your family?). If I have to be isolated again, I may have no other choice but to go to a hotel. I feel bad to have to resort to that option, but I don't really have a whole lot of other choices. I can't really uproot my mom again like that since it not only affects her, but it also affects the rest of my family.

Oh, and to answer your question, Joplin, yes, I'm a male.  I did know about the very low percentage of males winding up with thyroid cancer (I guess I'm one of the 'lucky' few! hahah), but I didn't know about it being more aggressive in men than women. Even though the cancer was in the early stages of spreading, I'm definitely thankful that it was caught early.

Side note...I did get my blood test results back yesterday. Sounds like everything was normal, but they still want to get my TSH levels closer to 0. I currently have a TSH level of 1.72, which doesn't sound all that high compared with some other TSH numbers I've seen on here.

I'm currently on 200mcg of Synthroid, but they're recommending I bump up my dosage (stay on 200mcg, but instead of taking 1 pill per day, take 2 pills on one of the days a week. So, say, 6 days I take one pill. The 7th day, I take 2 pills). We'll see how that turns out.

One last question!! Sorry, my posts are always long. Have you noticed any symptoms while on Synthroid? My mom is pushing hard for me to get on natural hormones (Naturethroid) since she doesn't trust Synthroid. I wondered how many of you have switched to a natural solution, are thinking about switching, or have tried natural hormone but switched back to Synthroid because you didn't like the natural stuff. I realize I should probably make this question a separate topic. Heck, I'm sure there are multiple threads open on this very issue already. But I figured...hey, while I have your attention, I might as well ask. 

Thanks for all the help so far!


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## joplin1975 (Jul 21, 2011)

And here's my long and windy response!

1) When I was in isolation, life didn't get altered significantly. I did work from home that week, just because it was easier. I used the guest bath and slept in the guest room, but my husband and I watched TV together on the couch (and my "office" for that week was also in the living room/couch). I ran errands, went to the grocery store, etc...I just tried to be mindful of staying around people too long. Also, I used disposable cutlery, plates, and glasses...just to be safe. But, really, it wasn't bad.

2) I'm struggling with TSH regulation. Yours is not low enough (neither is mine). Even with one node positive for metastasis you need to be shooting for 0.3-0.5. If it hadn't spread and/or was well encapsulated, you could got for 0.7-0.9.

3) If someone tried to switch me from Synthroid, I would throw the mother of all fits. Remember that those medication have T4 and T3 in them. T3 is very powerful. Very. If you feel good and have good lab values, throwing T3 into the mix could cause you to go hyper quickly. They are GREAT medications for people who don't convert T4 to T3...but if you are converting well, you could get yourself in a world of trouble. Neither medication is "natural"...while Naturethroid might be derived from animals, it is still heavily processed and hardly "natural." I wouldn't let that factor alter your decision -- I think the move to go to Armour and Naturethroid should be made because you feel badly or because your labs don't look great.


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## joplin1975 (Jul 21, 2011)

Oh, and also...I did have the option of taking 150 millicurries and being hospitalized. My doctor strongly advised against it. He said: "Being stuck in a hospital room for 10 days with no means of communicating with your family and no human interaction, save for the three times a nurse brings you in your meal and then runs out, generally results in serious mental health issues for all our patients. You had cancer. I think that was enough."


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## bluemoonguy (Apr 22, 2012)

joplin1975 said:


> 3) If someone tried to switch me from Synthroid, I would throw the mother of all fits. Remember that those medication have T4 and T3 in them. T3 is very powerful. Very. If you feel good and have good lab values, throwing T3 into the mix could cause you to go hyper quickly. They are GREAT medications for people who don't convert T4 to T3...but if you are converting well, you could get yourself in a world of trouble. Neither medication is "natural"...while Naturethroid might be derived from animals, it is still heavily processed and hardly "natural." I wouldn't let that factor alter your decision -- I think the move to go to Armour and Naturethroid should be made because you feel badly or because your labs don't look great.


Huh, that's very good to know. Quite honestly, I generally don't feel awful on Synthroid. I have noticed a few things lately that are a bit strange, but these symptoms could be related to something else. The biggest thing is that at times, my head feels a bit fuzzy. Almost like I'm light headed.

A week ago, the day after taking Nyquil, I woke up to switch sleeping positions and I had the worst case of vertigo I've ever experienced. That could be because it was the ONLY experience I've had with vertigo, but I digress. My eyes were spinning like crazy and the feeling lasted for a good 5-10 seconds. I thought that I might be having a seizure or something. The next day I had the same symptoms, but not quite as bad. This all could be related to Nyquil since it came on so suddenly. But the fact that I've never experienced this before after taking Nyquil is what frightened me the most.

I'm curious what side effects you all might be experiencing since being put on thyroid hormones, if any?

As for natural hormones versus synthetic, the points you brought up are good ones. They're also very relevant to my mother. She was diagnosed with Hashimotos ages ago and her body does have a hard time converting T4 to T3, which is why she's on Armour. I know she means well and wants what's best for me (as do I), but I am really struggling to make a decision on whether to stay with Synthroid or not. I suppose I'll have to do more research on this since I'm so new to it. I do, generally, feel just fine and I don't want to mess that up. But if there is a more natural option out there, I'm all for it. However, if Armour and Naturethroid really aren't as natural as I'm lead to believe, as you're stating, I don't see a huge incentive to switch (outside of these natural medications being cheaper than Synthroid).

Side note... I've read that generic Levothyroxine is not a good way to go. The pills aren't as consistent as Synthroid on a batch-by-batch basis. Is this what you've heard, too? I really hate to cut corners, but if I can pay $15 a month for Levothyroxine versus close to $30 a month for Synthroid, I'd rather go with Levothyroxine if they both do the same thing, essentially.


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## joplin1975 (Jul 21, 2011)

I'm not sure about batch-to-batch consistency. I know my doctor suggested if I could handle the extra cost of Synthroid, to go with it (over a generic) but I *thought* her concern was the fillers.

Do you have copies of your complete lab work with ranges? The lightheadedness couldbe explained if your numbers are "normal" but not perfect.


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## bluemoonguy (Apr 22, 2012)

joplin1975 said:


> I'm not sure about batch-to-batch consistency. I know my doctor suggested if I could handle the extra cost of Synthroid, to go with it (over a generic) but I *thought* her concern was the fillers.
> 
> Do you have copies of your complete lab work with ranges? The lightheadedness couldbe explained if your numbers are "normal" but not perfect.


Sorry I've been away for awhile and haven't had time to respond!

Yeah, I'm still not sure if I'm going to stick with Synthroid or not (cost aside). This floaty, dizzy feeling I'm getting in my head is just refusing to go away. I really can't tell if it's the Synthroid or not, but it's starting to concern me a bit.

I've been in touch with a doctor's office locally here in Austin, TX that prescribes natural medicines and I think after I go through my current batch of Synthroid I'm going to give Naturethroid a chance, especially if this weird dizziness doesn't go away. I just hate to disturb the progress I've made in trying to get my thyroid levels under control since my TT in January. Have any of the rest of you made a switch over to a natural thyroid hormone soon after your surgery? If so, I'd love to hear your experiences.

As for my levels, they should all now be listed in my signature. One thing that frustrates me is that my current endocrinologist doesn't really test all aspects of thyroid hormone in my body, more specifically anything T3 related. Admittedly I haven't done enough homework on the matter, but I'm not sure how well my body is handling converting T4 to T3.


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## joplin1975 (Jul 21, 2011)

bluemoonguy said:


> One thing that frustrates me is that my current endocrinologist doesn't really test all aspects of thyroid hormone in my body, more specifically anything T3 related. Admittedly I haven't done enough homework on the matter, but I'm not sure how well my body is handling converting T4 to T3.


I think you hit the nail on the head with this...if I were you, I'd get that done first, before making the switch, just so you have some starting numbers for comparison purposes.


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## Andros (Aug 26, 2009)

bluemoonguy said:


> Sorry I've been away for awhile and haven't had time to respond!
> 
> Yeah, I'm still not sure if I'm going to stick with Synthroid or not (cost aside). This floaty, dizzy feeling I'm getting in my head is just refusing to go away. I really can't tell if it's the Synthroid or not, but it's starting to concern me a bit.
> 
> ...


You can get your FT3 and FT4 done yourself, if you like. It would be important to know especially since your goal should be to have suppressed TSH.

HealthCheckUSA

http://www.healthcheckusa.com/

It would also be good to get testosterone and ferritin checked. Sometimes there is a domino effect as a result of one illness.

You have been through hell; you body has a lot of healing to do. Rest and take care of yourself to the best of your ability.

Sometimes OTC stuff is contraindicated w/thyroid disease. I believe Nyquil is one of them.


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