# A newbie's story



## bluedevil1 (Sep 12, 2011)

First things first, I'm totally new to this board, so hi! 

I'm definitely not new to thyroid problems though. For starters, I'm a 19 year old girl in college. When I was 11, I had a partial thyroidectomy. My PCP thought it was enlarged, and sent me to an endocrinologist (I didn't even know that was a word back then) who found a 4.2 cm nodule. The aggressive growth, and two biopsies that came back inconclusive, led them to thinking I needed that side of it out. The isthmus and thymus ended up coming out too. The pathology reports said the nodule was benign in the end.

I got put on Synthyroid, and thought that would be the end of my problems. Sure, I had to get biopsies, ultrasounds, and dosage changes occasionally, but they always came back inconclusive or clean and so I never really thought about it. I knew my thyroid had a ton of nodules--it's been described as looking like a barrel of apples--but assumed it would stay that way.

Last year I aged out of the children's hospital and moved to the adult building. I got a new endo, who told me I didn't need to be on Synthyroid as a suppressant anymore, so over 12 weeks I lowered my dose to nothing and everything seemed perfect, except for the fact that one of my nodules was clearly visible to anyone looking at my neck. When I got home for the summer, my doctor wanted a checkup ultrasound. I had always had one "problem" nodule on the side that was left, and I figured it was that one. Nope! The doctor saw two large nodules, but my thyroid was so nodular that he couldn't tell which one had new growth. That led to another biopsy that came back inconclusive, but he said he would approve me having the surgery if I wanted the rest of my thyroid out anyway.

I went for it, and got the rest out just a few weeks later. My surgeon told me she didn't see anything markedly suspicious on the table, except for the fact that my thyroid had grown back deep enough that it was starting to bump into my windpipe. Two weeks went by and I hadn't gotten official pathology back, and then I got the call I never ever wanted to hear--one of the last nodules they looked at was a 1.5 cm follicular carcinoma, and they typed me as Stage 1 with vascular invasion.

Now, over Christmas break I'll be going on a low-iodine diet past New Years' Day and then getting RAI. What a way to start the new year, right?? In the meantime I was put on 125 mcg of Synthyroid--which wasn't enough because my TSH levels at my last bloodwork were 13.2--so I've been bumped to 175 mcg.

Thanks for reading--it feels nice to know that there's people going through the same thing. It's been rough talking about with all my college friends--they can pretend to understand, but I feel like I've had to grow up a little earlier than I should have. Thanks again!


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## Octavia (Aug 1, 2011)

bluedevil1, welcome to the forum, despite the fact that there are at least 100 other things you'd rather be doing! I agree...you've had to grow up faster than most girls. 

The worst part of the RAI for me was the low-iodine diet. I'm not used to putting that much thought and planning into what I eat, so it was a struggle (not to mention expensive). The RAI itself was a breeze for me.

I'm glad they've increased your Synthroid dose. The important thing for us post-cancer people is to keep that TSH extremely low, like very close to zero. That keeps any rogue/leftover thyroid cells from growing too much.

It looks like they did a nice, thorough job on your pathology, and the good news is that the cancerous nodule was one of your smaller ones. And the fact that you're so young is good as well. You were smart to take the doctor's offer to have the remaining half of your thyroid removed.

Be sure to talk with your doctor about whether you need to stop taking your Synthroid a few weeks prior to your RAI. The alternative to doing that is to get a shot (or two) of Thyrogen, but Thyrogen has been very hard to get lately, so most of us have to go the Synthroid-free route for a few weeks to make sure the TSH level goes up above a certain threshold (35-40 seems to be the threshold) so they can do the RAI. If you need to stop your Synthroid, you'll probably want to schedule your RAI toward the end of your Christmas break so you aren't too hypo during your final exams (which I assume are before break).

Let us know what other questions you might have, or if you just plain want to "talk," that's fine, too!


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## Andros (Aug 26, 2009)

bluedevil1 said:


> First things first, I'm totally new to this board, so hi!
> 
> I'm definitely not new to thyroid problems though. For starters, I'm a 19 year old girl in college. When I was 11, I had a partial thyroidectomy. My PCP thought it was enlarged, and sent me to an endocrinologist (I didn't even know that was a word back then) who found a 4.2 cm nodule. The aggressive growth, and two biopsies that came back inconclusive, led them to thinking I needed that side of it out. The isthmus and thymus ended up coming out too. The pathology reports said the nodule was benign in the end.
> 
> ...


Oh, honey bunny!!! The only good news I can think of is thank God they found the cancer and it will all be taken care of. And you will be well again.

They know to suppress the TSH so I feel you are in very good hands. I am so so sorry for all of this happening; especially to a young girl. To think you have dealt w/ this since the age of 11.

Thank you for sharing your story and we are very very glad you are here. I am sure you will help many here with your story and hopefully we will be helpful and supportive to you in turn.









Thanks for hopping by!


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## Lovlkn (Dec 20, 2009)

{{hugs}} to you Bluedevel1 - a Duke student I assume? I know it's got to be hard for you just being in college alone and then on top of it having a thyroid situation like yours -

Have your doctor run FT-4 at minimum and FT-3 tests which are better for figuring out proper dosing for replacement meds.

Be sure to take your replacement at least 1 hour before eating and not within 4 hours of calcium or iron supplements


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## Octavia (Aug 1, 2011)

Lovlkn said:


> Be sure to take your replacement at least 1 hour before eating and not within 4 hours of calcium or iron supplements


1 hour before eating? My doc said 30 minutes, which is consistent with what the drug insert says. Are some docs saying an hour? Geez, that'll really be a challenge, since I have another drug I have to take also 30 minutes before eating (but 30 minutes - or an hour, if what you're saying is correct - after my thyroid replacement).


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## webster2 (May 19, 2011)

BlueDevil, welcome....I am so sorry you have to deal with this at your age. Hang in there, you will find many posters that will support you here on this board. ((HUGS))


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## bluedevil1 (Sep 12, 2011)

Thanks for all the well wishes everyone! I didn't expect to get that many responses! Octavia, that was a big concern of mine about the RAI--I wanted to make sure it didn't affect my finals schedule. I'm going to have to go off my Synthroid because my doctor can't get the Thyrogen shot--I'll be going off in the middle of December, and getting my RAI about a week into 2012. The way it works out, actually, I'll be able to stop taking my pill the day after my last final.

I am a little scared about going so hypo for three weeks, though--if I'm at 13.2 for TSH now and I feel out of whack, then how bad am I going to be if I'm nearly 3 times that? Our doctor gave my parents the ThyCa cookbook online, so they're looking into stuff to make for me when I'm home, but it looks like we might not be hosting Christmas this year because that'll be right at the end of my three-weeks-off. My endo said I should look forward to eating a lot of raw veggies for my low iodine diet--is it really that bad? He did warn me about basically having no functioning salivary glands during my RAI too--my friends are all sending me boxes of lemondrops since they can't come within three feet of me . I think I'm going ot be around 50 millicuries--how does that compare to what some of you guys have had, bodily-effect wise? Sorry about all the questions! It's just really nice to hear from people who have gone through the same stuff


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## Octavia (Aug 1, 2011)

bluedevil, I was given 100 millicuries, and I don't recall having any side effects--no nausea, no salivary gland issues, nothing. Hopefully, your experience will be similar!

No, it's not all raw veggies...there are many options in the low-iodine diet. Here's the link to the one your doctor shared with your parents. Maybe you can take a look when you're not studying and give your parents some suggestions of things that sound the best to you. 

http://www.thyca.org/Cookbook.pdf


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## bluedevil1 (Sep 12, 2011)

Thank you so much!! My doctor didn't remember to send me the link, just my parents haha. I'm just really glad that my low-iodine misses Christmas dinner--that would be a real bummer. Maybe I'll get my roommate to try cooking some of this in our dorm's nice big kitchen, so I can figure out what tastes best!

And that's really good to hear, that you didn't have any side effects. My doctor said I wouldn't have any, really to speak of, but then my doctors have told me a lot of things haha. They told me to suck on Lemonheads three times a day for five days to make sure my salivary glands stay in good shape. A bunch of my friends are going to send me boxes of them over break--they're the best  Also, what sort of isolation did y'all go into for the five days? I know I'm not supposed to be within three feet of anyone for more than an hour at a time. My parents are going to stay at home with me as of now, but if there's any chance that my stuff will hurt them, well, I don't want to take that chance.


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## Octavia (Aug 1, 2011)

My isolation consisted of staying in a bedroom in my house (alone) for 3 days (except trips to the bathroom), then just at a distance from others for another few days. Your parents will be fine. If you have younger siblings, or if there's anyone in the household who's pregnant, make a special effort to stay away from them.

As for the lemon drops, I think the standard recommendation is to wait 24 hours to start sucking on them.


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## joplin1975 (Jul 21, 2011)

Hi bluedevil...welcome...

I wasn't instructed to go on a low iodine diet (I hear that's not fun!), but I did just finish up the RAI. I was given 99 millicuries (our state requires hospitalization for anything 100 and above). Ten days prior to the RAI, my TSH was 71...I don't know what it was after the RAI but I will say I didn't have any side effects from the RAI itself...but I could feel myself "crashing" (for lack of a better term) -- e.g. total exhaustion, being bloated etc -- all of which I think are directly related to being very hypo.

I was in a stepped down isolation for ten days. The first three were consistent with Octavia's experience -- in a bedroom by myself with allowances for bathroom breaks and to get food. I used our guest bath and made sure no one else used it during that time (you can share with someone/other people, but you just have to be careful about flushing twice, washing your hands, etc). After the first three days, I could spend eight hours of the day within three feet of another person, but continued to use the precautions with regard to the bathroom and, for my own piece of mind, I used disposable utensils. I had to sleep alone for a total of ten days.

Good luck!


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## Octavia (Aug 1, 2011)

bluedevil, you may find this link helpful. It has some time guidelines at the bottom. But as you can see from our responses...we seem to get different instructions!

http://www.thyroid.org/patients/faqs/radioactive_iodine.html


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## bluedevil1 (Sep 12, 2011)

Hi everyone,

I haven't been able to make it to the board in a long time but thank you so much for your responses and encouragement. I'm starting to get nervous for my RAI, because I go off of my Synthyroid in 8 days. On top of that, I have four finals (all of my classes) this week and a play to perform next week on campus that I need to have all my lines known for (not happening). I haven't ever been this stressed, in my memory...anyway. I'm just getting nervous too because of some of my TSH results. I'm now on 200 micros of Synthroid, because when I got bloodwork done after being on 175 for six weeks or so my TSH was still at a 12. My last bloodwork six weeks before that it had been a 13.4. As a reminder, my operation was the last week of July and I found out about the follicular carcinoma in the middle of August. My doctor seemed much more upset on the phone when she told me my results than she usually is, which is making me worry. Basically, a little voice in the back of my mind is saying some of those rogue cancer cells are starting to regrow, which is why my TSH isn't coming down, which is scaring me. I was wondering, basically, if anyone could hypothesize anything about my TSH levels. I know it's speculation, but hearing that my levels aren't bad would be great. In short, I may have a stress breakdown by the end of the week. Any helpful words just like last time would be so welcomed right now. 

P.S. Finals week stinks.


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## joplin1975 (Jul 21, 2011)

Best of luck with the RAI. I'm sorry you have to have it during such a hectic time in your life! It makes a difficult situation even more difficult.

I'll have to let the bloodwork gurus answer your question, but I'm not sure if an elevated TSH would indicated re-growth of the cancer. I would think it might indicate that Synthroid isn't the best option for replacement meds for you...I would be more curious to know where your thyroglobulin is these days.

Hang in there!


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## Andros (Aug 26, 2009)

bluedevil1 said:


> Hi everyone,
> 
> I haven't been able to make it to the board in a long time but thank you so much for your responses and encouragement. I'm starting to get nervous for my RAI, because I go off of my Synthyroid in 8 days. On top of that, I have four finals (all of my classes) this week and a play to perform next week on campus that I need to have all my lines known for (not happening). I haven't ever been this stressed, in my memory...anyway. I'm just getting nervous too because of some of my TSH results. I'm now on 200 micros of Synthroid, because when I got bloodwork done after being on 175 for six weeks or so my TSH was still at a 12. My last bloodwork six weeks before that it had been a 13.4. As a reminder, my operation was the last week of July and I found out about the follicular carcinoma in the middle of August. My doctor seemed much more upset on the phone when she told me my results than she usually is, which is making me worry. Basically, a little voice in the back of my mind is saying some of those rogue cancer cells are starting to regrow, which is why my TSH isn't coming down, which is scaring me. I was wondering, basically, if anyone could hypothesize anything about my TSH levels. I know it's speculation, but hearing that my levels aren't bad would be great. In short, I may have a stress breakdown by the end of the week. Any helpful words just like last time would be so welcomed right now.
> 
> P.S. Finals week stinks.


Oh, dear!! Good to hear from you! I must comment that it is absolutely essential to get that TSH down for w/cancer it most usually should be suppressed.

If Synthroid is not working, your doc has to wonder why. That is a high dose. I don't think you are converting. You may be a candidate for Armour Thyroid.

Please get the FT3 and FT4 tests along with the TSH on the same day. Post results and ranges here if you will?

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=3


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## bluedevil1 (Sep 12, 2011)

Thanks so much, everyone, for the support and answers in the last few months. Just as an update on my condition--my post-ablation scan came back clean today. I did my low-iodine: not nearly as bad as I'd feared. In fact, I learned that my parents are pretty darned creative cooks. It was so helpful that they both decided to do the diet with me for the entire ten days--family solidarity really made a mental difference for me. The lowest part was during the three weeks of no Synthroid--it really messed me up. I was wearing four and five layers of clothes around the house, sleeping in gloves and a jacket most nights, and in a serious mental fog. I'm an A and B student down at college and I was apparently talking and thinking almost like I was mentally disabled. Seriously long pauses between words, almost no concentration, no focus. I just feel so lucky that I didn't have to start that until the day after my last final; I couldn't imagine having to deal with that during my tests. My tracer dose of radiation showed no spread, which was SUCH a relief to my family, since my cancer had gotten into my bloodstream, according to my doctor in the summer. My radiation and isolation went as well as they could have--it was rough, but I knew that I needed to do it to kick this thing. I got a pill, not a liquid, also. I just got my post-scan today, and my doctor said it was clean! It was such a great feeling to know that I can go back to being just a normal college student now and not have this emotional and physical cloud hanging over my head. I'm back on 200 mcg of Synthroid, and I haven't felt this good in six months! It's been quite the ride since August, and I'm glad it's over. As low as the emotional low points were, I feel like I learned a lot about my own multi-faceted strength. It sucked always feeling like the odd one out at the doctors', as I was always the youngest by decades, and feeling a bit like I was a freak for having this happen to me at 19. Now, though, I feel like a giant weight has been lifted off my shoulders and I get a fresh start--as cheesy as that sounds. I just can't wait to be back at school in two days and feel like a normal 19 year old again! So, again, thanks so much to everyone who answered over the last few months for all the answers you gave. They truly helped.


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## Octavia (Aug 1, 2011)

That is great news about your scan, for sure! Congrats on successfully navigating the world of thyroid issues!!! Have a great semester at school...


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## webster2 (May 19, 2011)

Very good news! Congrats!


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## Andros (Aug 26, 2009)

bluedevil1 said:


> Thanks so much, everyone, for the support and answers in the last few months. Just as an update on my condition--my post-ablation scan came back clean today. I did my low-iodine: not nearly as bad as I'd feared. In fact, I learned that my parents are pretty darned creative cooks. It was so helpful that they both decided to do the diet with me for the entire ten days--family solidarity really made a mental difference for me. The lowest part was during the three weeks of no Synthroid--it really messed me up. I was wearing four and five layers of clothes around the house, sleeping in gloves and a jacket most nights, and in a serious mental fog. I'm an A and B student down at college and I was apparently talking and thinking almost like I was mentally disabled. Seriously long pauses between words, almost no concentration, no focus. I just feel so lucky that I didn't have to start that until the day after my last final; I couldn't imagine having to deal with that during my tests. My tracer dose of radiation showed no spread, which was SUCH a relief to my family, since my cancer had gotten into my bloodstream, according to my doctor in the summer. My radiation and isolation went as well as they could have--it was rough, but I knew that I needed to do it to kick this thing. I got a pill, not a liquid, also. I just got my post-scan today, and my doctor said it was clean! It was such a great feeling to know that I can go back to being just a normal college student now and not have this emotional and physical cloud hanging over my head. I'm back on 200 mcg of Synthroid, and I haven't felt this good in six months! It's been quite the ride since August, and I'm glad it's over. As low as the emotional low points were, I feel like I learned a lot about my own multi-faceted strength. It sucked always feeling like the odd one out at the doctors', as I was always the youngest by decades, and feeling a bit like I was a freak for having this happen to me at 19. Now, though, I feel like a giant weight has been lifted off my shoulders and I get a fresh start--as cheesy as that sounds. I just can't wait to be back at school in two days and feel like a normal 19 year old again! So, again, thanks so much to everyone who answered over the last few months for all the answers you gave. They truly helped.


 Absolutely wonderful news. Don't be a stranger to us now.

Others could benefit from your experience.

Hugs,


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## joplin1975 (Jul 21, 2011)

So wonderful to hear you are doing better! Best wishes for continued good health.


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