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Old 06-05-2013, 02:05 PM   #2371
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Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.
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Old 06-05-2013, 05:53 PM   #2372
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Good luck with the switch. Sometimes being a patient is so frustrating!!!

I have been on synthroid for 20 years. Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink. @@.

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I'm not sure about why they are stuck on Synthroid. I've been told by three endos to only stick with brand name. That could be Synthroid, Levothroid, or Levoxyl. Since that time many years ago, they've added a few more "brands" such as Unithroid and Tirosint. All well-respected brand name thyroid preparations.

I initially started out on Synthroid at 125 mcg which was not enough for me. Back then, the next dose up was 150 mcg which was too high. Levothroid made a .137 preparation so I was switched to that and never had a problem. Then there was a recall on Levothroid and I had to go to Synthroid. By then, they were making a .137 dosage. I switched over and never felt a bit of difference and my TSH remained stable. The bonus was that Levothroid was $5 cheaper per month. Anyway, while on Synthroid I discovered that I was allergic to any medication that includes povidone. So I had to switch to Levoxyl because it was the only one that didn't contain that. My endo was okay with it because it was a brand name. I switched to their .137 and have no issues with TSH stabilization or how I feel. Bigger bonus: it was really cheap--runs the same price as generic which is why a lot of people *think* it's a generic. I pay $20 for a 3 month supply.

But, now I on to Tirosint. I expect I won't see a change at all. I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.
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Old 06-05-2013, 07:59 PM   #2373
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Quote:
Originally Posted by Christine View Post

I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.
You could be right! But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!
I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there! Lol

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Old 06-06-2013, 05:01 AM   #2374
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Quote:
Originally Posted by SingingMom View Post
You could be right! But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!
I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there! Lol

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Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!! For me, though, at times, it really does come down to money. My health insurance charged a premium for Synthroid (as they do now for Tirosint). For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications. If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!
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Old 06-06-2013, 10:00 AM   #2375
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Quote:
Originally Posted by AmazingGrace View Post
Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.
Glad to hear you got great results LoriAnn.

Who did your original biopsy? If they now want you to have an ent referral. I would take the ent referral especially since you say you are having discomfort. Is the discomfort just pain or swallowing issues etc?

I think its wise to get an ent opinion/referral.

Wishing you all the best.
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Old 06-06-2013, 10:07 AM   #2376
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welcome to all the new posters

Sorry to hear everyone is having all the med problems with levoxyl. I think its terrible about the short to no notice of replacement too.

Sounds like no ones dr. told them about it ahead of time?

I have always taken name brand synthroid. My ins. wont pay for it either, so Christine I feel your med pain. Mine is $25 a month plus all my ds asthma meds and my other meds. I think we get 7 between us a month. The pharm loves us!

Nothing too much new, other than I am going to the rad. onc. on june 20th.

Our trip to disney was good, You can read about my magical night on the resteraunt board, the thread is - I cried at Yachtsman 6/1.

My r hip was hurting a lot when we were there. I dont know if the reclast infusion I had is suppose to help it or not but I am having a lot of issues. I dread going to the dr. I already know the huge doses of 200 synthroid have probably had a negative impact on it as well. Even the endo in the past mentioned it does a number on your bones at such a high dose etc. sigh, sigh.
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Old 06-06-2013, 10:36 AM   #2377
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Quote:
Originally Posted by Christine View Post
Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!! For me, though, at times, it really does come down to money. My health insurance charged a premium for Synthroid (as they do now for Tirosint). For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications. If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!
I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years. I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply. I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky.

I do have my first ultrasound on my thyroid coming up next Tuesday. Can anyone explain what they do? Do I have to not eat before or drink anything funky at the hospital? I have been told nothing about preping for it. I don't even know why my doctor wants one done other than I never had one done. She has not even felt my thyroid so she didn't feel anything on it.
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Old 06-06-2013, 11:02 AM   #2378
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Originally Posted by angwill View Post

I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years. I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply. I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky.

I do have my first ultrasound on my thyroid coming up next Tuesday. Can anyone explain what they do? Do I have to not eat before or drink anything funky at the hospital? I have been told nothing about preping for it. I don't even know why my doctor wants one done other than I never had one done. She has not even felt my thyroid so she didn't feel anything on it.
No prep for a thyroid ultrasound for me. I had one done last year, when I changed endocrinologists. Since she wasn't my original doctor, she wanted a baseline for her own files. Of course, I haven't had a thyroid for 21 years, so it sort of amused me. Lol

My "treatment plan" was different 21 years ago than what they would supposedly follow now. My original endo was a saint, treated me like a partner in the journey, and respected my opinions. Loved him. He left private practice for research (what a loss for those who had one-on-one care from him) and referred me to a colleague. Stayed with her 10+ years and hated her. (How stupid of ME, but the practice was supposedly " the best" in the area. @@). She couldn't get over how I was not treated the way "we do it now" and really caused me a lot of angst.

Finally I found this other group. My current endo did also say, " Hmm, protocol is different now..." But she did not berate me or insist on unnecessary tests and procedures. I like her very much, but no one will ever be like that original doctor!

The ultrasound consisted of lying on a table and having the tech scan your neck. The only "discomfort" was laying flat with no pillow, or with the pillow under your neck, not your head. I like my head elevated - normally sleep with 3 or 4 pillows! Lol. The other annoyance is not swallowing when some one says "don't swallow". Lol of COURSE, that's when I need to swallow! ::tee hee::

Seriously though, the ultrasound doesn't take long and it is pain- free. Good luck!

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Old 06-06-2013, 11:37 AM   #2379
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Yeah like singingmom said, no prep necessary. It took me 10 minutes for the test and longer to get the goo off. Not bad at all!
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Old 06-06-2013, 12:09 PM   #2380
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Thanks for the info. Since I now know there will be goo involved I will have to bring a hair tie. Blech!!! lol It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol
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Old 06-06-2013, 03:07 PM   #2381
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singing mom - when I read that you sleep with 3 or 4 pillows.

I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.

I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?

Anyone else use 3 or 4 pillows?
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Old 06-06-2013, 03:18 PM   #2382
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Thanks for the info. Since I now know there will be goo involved I will have to bring a hair tie. Blech!!! lol It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol
Yes! And if your hair is long, get as much away as possible from your neck. like a floppy messy bun that can be squished w/o pain. That's where I ran I to goo removal issues.

My hair at the time was pulled back in a high ponytail and still reached about mid back. Nurse asked a question while i was about to clean up and I turned my head to answer only to get a bunch of hair stuck in the goo on my neck bad timing
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Old 06-06-2013, 03:34 PM   #2383
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Originally Posted by luvmarypoppins View Post
singing mom - when I read that you sleep with 3 or 4 pillows.

I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.

I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?

Anyone else use 3 or 4 pillows?
I like to sleep in a pile of mushy feather pillows! But, I did not have a dissection, just total thyroidectomy with some additional lymph nodes removal.

Every once in a while I do feel like I am choking if I lie flat. But I attribute it to post nasal drip. Every once in a while I do feel chokey while I sing. (I teach elementary school music & am a leader of song in church)

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Old 06-10-2013, 09:57 AM   #2384
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Well, where else do you go when your feeling low ... but to the DIS of course. Some of you may remember me, Ive leaned on this thread before for great advise. Ill refresh your memory for my sake of needing help thus again. I had total thyroidectomy (sp) July 2009. Followed by a pill form of radiation and isolation due to that for 10 days. Ive been on Synthroid of course since then (but I take the generic form) seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen? shots (2) and then a blood work that showed fine *praise god* .... and they were just fine with that. My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan. I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck. I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy. I am scared to DEATH. has anyone else been through this?
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Old 06-10-2013, 02:52 PM   #2385
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Well, where else do you go when your feeling low ... but to the DIS of course. Some of you may remember me, Ive leaned on this thread before for great advise. Ill refresh your memory for my sake of needing help thus again. I had total thyroidectomy (sp) July 2009. Followed by a pill form of radiation and isolation due to that for 10 days. Ive been on Synthroid of course since then (but I take the generic form) seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen? shots (2) and then a blood work that showed fine *praise god* .... and they were just fine with that. My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan. I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck. I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy. I am scared to DEATH. has anyone else been through this?
I cant remember but didnt you also have the external beam radiation? Did they take out any lymph nodes during your initial thyroidectomy.

You neck has about 200 lymph nodes, so about 50 in each of the 4 quadrants. I had basically my whole L front quadrant removed, about 50 during my neck dissection.

I did have a swollen lymph node that was at level 2 I think. Cant remember. this was about 2 years after the total thyroidectomy. I cant remember. But it turned out to be an infected lymph node. But I had it accompanied by itchy skin too.

I am glad they are wanting to do a biopsy. Sometimes you have to get more rai.

But if you have already had rai and then the external beam and now you are having more lymph nodes, then maybe you are not rai avid anymore? Then maybe they could consider alcohol ablation.

I cant remember, but also are you the poster who did not like your surgeon/dr? or was that the endo?

If that is you and that is the case, I also might want to seek a second opinion.

Wishing you all the best and keep us informed. Hang in there!
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