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Old 08-16-2011, 01:21 PM   #1531
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Originally Posted by cristielf View Post
I'm new to this thread, but just wanted to say HELLO! I was diagnosed a few years ago with Papillary Thyroid Carcinoma (Thyroid Cancer).. I haven't looked through all these pages, but anyone else have it? I have the ear to ear scar that everyone says they don't notice, but I do.. i had a full thyroidectomy and a separate lymphectomy due to a return of the cancer. I'm due to get Thyogen injections next month prior to my annual LID scan. Anyone get this? what's it's like? Honestly, I'm more scared to get a shot in the butt than anything else
Welcome! I have Papillary thy ca too, stage 4, but mine also is the rare and aggressive columnar cell variant. I have a huge scar looking like a smile and a big drain hole since that had to stay in for about 3 weeks post op due to all my complications. My tumor was 12.5 cent. and was crushing my trachea. I also had a secondary tumor that I think was about 4 cm on the L side of my neck and they werent quite sure what it was but they said it was acting like lymphoma at one time? The path said not thyroid cancer though, just a lymph node tumor? I am rare and strange as always. Doctors love me.

I also have a jagged scar on the L side of my neck where I had the dissection and 47 lymph nodes out. I actually had 3 surgeries in 14 hours. 2nd one for post op bleeding and the 3rd one was another surgeon figured out my jugular vein had burst. I had to be placed in a coma for 2 days and needed 7 pints of blood. Its a miracle from God that I am still alive today. Also my dh insisted on pushing my bed down to the or., good as the 2nd surgeon told him I only had 15 minutes to live.

I just had my 3rd round of thyrogen in May. No diet this time or scan, just the blood test. I only get the shots in my arms. This time I had a sore arm for days on the L side. The other side was fine, but maybe as it was done by another nurse? First time I had headaches and nausea. Last year just headache and slight nausea. This time was very bearable, just slight headache.

My initial dose of rai was 200 and they just lowered my synthroid dose to 175, so next month we will see how that is going with the blood testing.

Can you share if your recurrence was on the same side if you had an initial lymph node removal? I am curious as my endo said since they have removed most of the L side, she thinks it will come back in my R side.

I also had a little scare the other month, but it turned out to only be a level 2 infected lymph node on my L side nearer to my ear verses where the dissection was.

Wishing you all the best.
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Old 08-16-2011, 05:00 PM   #1532
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Originally Posted by luvmarypoppins View Post
Hi Tina and welcome!! Of course we know who you are sweetie

I know you have been through so much but it sounds like you are on the right track with this doctor.

Christine is the resident expert here and she also lives in Va like you, hmm maybe you two are by each other???

Might be helpful to keep a little notebook for any questions, blood work etc.

Can you share what your synthroid dose is?

Feel free to ask anything you want here. Everyone will try to help you.

Personally I take the name brand as I dont want to deal with all the filler issues of the generics and my ins. co. wont pay for it though, but its a small price to pay for my health. My dose is 175 but that is because I have thyroid cancer.

Dont feel bad about the lack of a diagnosis for a long time. I too went through that. My reg. gp was totally clueless. He did a sonogram about once a year but I never had thyroid blood tests.

Hang in there Wishing you all the best always.
Thank you for the warm welcome. I can't say I'm real happy right now as I'm a big emotional mess to be honest. I'm taking a low dose of synthroid right now at 25mcg. I don't even know enough to even ask questions. I'm reading up when I have time but I have two different medical diagnosis to juggle.

In addition I have also been diagnosed with a sever case of PCOS and starting metformin and it's miserable. The doctor wants me to escalate the dosage to 2000mg by months end if I can tolerate it but right now I cringe at the thought.

At least I'm getting some help and the doctor really is a nice guy. Blunt and not real personable but certainly seems competent and I appreciate that. I do hope you are feeling better .



Quote:
Originally Posted by Christine View Post
Well Tina, I'm sorry to have to welcome you to our little group but at the same time is it weird for me to say that I'm happy you have a thyroid condition????

I'm hoping this will really turn things around for you?

When the doctor says that you "swing both ways" does that *really* mean that you have Hashimoto's thyroiditis (which is the only process I know of that can cause a person to be hyper at times as well as hypo at times)? I'm by no means an expert on Hashi's but I am wondering if he gave you that diagnosis.

I remember when I was very hypo I had terrible carpal tunnel syndrome and cramps in my calves. The good thing for me is that I knew I was hypo so I didn't have to wonder what was wrong with me. My vision got a little wonky too!

Please let us know how you are doing. It's great that even with the thyroid stuff going on, you were still have to lose all the weight you did. You might see a little more happen now.
Hi Christine! Thanks for the welcome to this great club. I haven't been diagnosed with Hashi yet. He wants to continue to monitor me for a bit longer. The doctor said that my levels are rising and then dropping but not necessarily into bad levels but because my levels rise and then might drop the next day it's putting me into a spin. Sometimes litterally I feel!

All these symptons that I thought were just crazy apparently really make sense with this diagnosis. I do try to keep hope that it will help with the fertility issues and weight as well. The doctor was amazed that I've managed to keep any weight off but now have just hit a wall not gaining but not loosing no matter what I do.

The doctor does seem to think with the thyroid medicine and the PCOS medicine that he anticipates more weight loss. He didn't mention numbers but he did say double digits so we'll wait and see.Thank you again and hopefully I will learn enough to even ask more questions.
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Old 08-16-2011, 05:43 PM   #1533
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Tina-

I have PCOS too. Diagnosed at the same time as my cancer.

The metformin- are you taking the 'ER' version? People seem to tolerate it better. Also, are you taking it with food? The only other thing I can suggest is to avoid really sugary foods while on it- pop, etc will really make your insides act up.
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Old 08-18-2011, 09:31 AM   #1534
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Morning Everybody,

Well yesterday was an interesting day. I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good. The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her. She explained things very direct, but actually listened to me and my story.

I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op). I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe. It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.

Thanks everyone I hope you're all feeling better
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Old 08-18-2011, 03:20 PM   #1535
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wdwdancer...I had a total thyroidectomy 5 years ago this week, and the only thing I had to deal with is my levels really screwed up afterwards. Ohh and they had to take my parathyroid which also took my blood calcium down too. Now I struggle with getting the amount of calcium needed to be "normal". A little advice, if you are a side sleeper, you probably won't be able to sleep that way for a couple of days after your surgery. Also, a soft diet is what I found worked the best since hard or solid foods didn't go down my throat that easily (the hospital tried to give me french toast the morning after surgery...let's say that didn't work out so well...LOL). I ate pudding, applesauce, jello, mashed potatoes a lot for about 2 weeks until my throat was healed enough to handle more solid foods.

An update from me...I just had another set of labs done this morning, and I should find out either tomorrow or Monday about my levels after moving to a lower dose of this new medicine. When I find out I will let y'all know!!!
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Old 08-18-2011, 08:50 PM   #1536
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Hi All, just checking in. Finally feeling better with my new, lower dose. And I am actually feeling a bit more in control when stressful situations arise. I think before I act, which was not an option when I was on that high dose.

Saw my surgeon the other day and he was happy with my clean scan. He said he can do a scrape thing to make my scar look better, but right now I'm content. And the best part is he said I can move to seeing him every 6 months instead of every 3 months.
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Old 08-18-2011, 10:07 PM   #1537
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WDWdancer,

The one thing I would really encourage you to check into is how many thyroidectomies the surgeon has done and how often there are complications with paras, etc.

The surgery itself is not too bad.
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Old 08-19-2011, 09:10 AM   #1538
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I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again. This is a good thing because I was getting at the top end of the meds. Now I am going to a 200mcg a day!! This is the first time since my surgery that I have been that low in mcg. I am really loving this new medicine because it is actually working for me.
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Old 08-19-2011, 09:43 AM   #1539
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Quote:
Originally Posted by 1Grumpy9 View Post
I just got a call from my endo's office and my results are still that my levels are still high, so she wants to lower my meds again. This is a good thing because I was getting at the top end of the meds. Now I am going to a 200mcg a day!! This is the first time since my surgery that I have been that low in mcg. I am really loving this new medicine because it is actually working for me.
You're on the Tirosint, correct?

So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you? I guess I'm a little confused because you are now lowering your dosage. That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!
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Old 08-19-2011, 10:30 AM   #1540
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Quote:
Originally Posted by WDWDancer View Post
Morning Everybody,

Well yesterday was an interesting day. I went to see a new endocrinologist who was recommended to me by my neurologist as I still have been feeling horrid but my current endo doesn't want to change my meds since the numbers are good. The reviews I had read on-liine of this new endo were horriable but surprise surprise my husband and I really liked her. She explained things very direct, but actually listened to me and my story.

I have an official diagnosis of hashimotos now and am scheduled for a total thyroidectomy in September (go on August 30th for my pre-op). I am 25 and nervous for the thyroidectomy but I have a mass on the right lobe that has been growing and new nodules on the left lobe. It is a relief to finally have a name and plan but now I am worrying about what taking the thyroid out will do.

Thanks everyone I hope you're all feeling better
Glad you liked your new endo. I think that is very important to have a good relationship with them, that they will listen to you and you will feel comfortable with them etc.

I am sure you are anxious abut the surgery. I too will agree with the eating and swallowing issues post op. I tried to eat lettuce/salad. Thought I was going to choke to death, right in the hospital! Lesson learned, stick with the very soft stuff, like mac and cheese, applesauce, maybe pasta, meatloaf, mashed potatoes etc and then keep working your way up. I also still have problems with certain breads and french fries.

Also if you have any hoarseness etc. some lifesavers, jolly ranchers, any other type of hard candy might help.

I felt much better keeping my head very elevated at first and only wanted to wear shirts that were no where near my neck etc. (more lower cut).

Wishing you all the best.
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Old 08-19-2011, 10:44 AM   #1541
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1Grumpy9- Hope the new meds work out for you.

Jenn - I am glad you are feeling better with the med adjustment. I felt so much better too, like I was not so much of a crazy person anymore. Everyone in the family is happy. Just wondering why you have to keep going back to the surgeon? Is it only for the scar issue, or the voice stuff etc? My surgeon said, after a year he basically didnt want to see me anymore but then he passed me off to the other surgeon but that was only for all the voice issues I was having. I am glad your surgeon offered you something about the scar. Would he do it himself, or send you to a plastic surgeon etc?

Micayla - how is the diet going? I think this is the best time of year to do it. I would dread it in winter.

Well in my thy ca website reading I saw:

1 guy who went through what I went through. He said his neck was like a balloon and he was bleeding internally. He called it a "close call".

Another guy said his "MAJOR" hospital only had 6 doses of thyrogen available and he was getting 2?? Wowsa, this shortage seems really bad. I am so blessed that I got it and Jenn too and Micayla you are lucky too. Thankful for my rad. onc. and living in the NY metro area for sure.

And here is my topic of discussion: SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years? Christine, what is your insight? and has anyone else had anything mentioned to them?
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Old 08-19-2011, 12:34 PM   #1542
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Originally Posted by luvmarypoppins View Post
And here is my topic of discussion: SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years? Christine, what is your insight? and has anyone else had anything mentioned to them?
It used to be that once you got two clean scans, you could skip a year. If that was clean, you went to a 5 year interval for the rest of your life. That changed, at least for me, in 2008 when my endo told me that the move was just to do Thyrogen with Tg testing. No more scanning for people like me.

My knew endo is on board with that. As far as I can tell, I will never have another scan again, just monitor with Tg and ultrasounds. In fact, since I won't take Thyrogen again, I will probably remove myself from my meds for a week or two before having my Tg done (if I can handle it).
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Old 08-19-2011, 12:35 PM   #1543
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You're on the Tirosint, correct?

So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you? I guess I'm a little confused because you are now lowering your dosage. That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!
I am on Tirosint...I had absorbsion problems with Synthroid. After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take. I was on Synthroid from when I was 7. The Synthroid was working, but not very well at all!!! My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.

You can be confused...I understand completly!!!
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Old 08-19-2011, 01:58 PM   #1544
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Quote:
Originally Posted by 1Grumpy9 View Post
I am on Tirosint...I had absorbsion problems with Synthroid. After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take. I was on Synthroid from when I was 7. The Synthroid was working, but not very well at all!!! My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.

You can be confused...I understand completly!!!
Okay, got it!! Thanks!
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Old 08-19-2011, 03:17 PM   #1545
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Hi there, I'm a newbie to this thread.

I am 42 yr old female with hypothyroidism. I take 100mcg of levothyroxine daily. I was diagnosed approx 7 years ago have been on varying dosages of synthroid or the generic ever since.

I feel like I know my body pretty well and honestly feel that I need to bump up on my meds, but the endo says that my bloodwork looks "perfect" (as of July). UGH!!

I feel like I do when the meds need to be adjusted. I was encouraged to read a previous posters comments about Carpal Tunnel symptoms and weird vision as I have been experiencing them.

I don't know whether to switch doctors or what I should do.
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