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Old 02-10-2010, 08:31 PM   #526
mrsklamc
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I thought I had been doing really well- blood levels were 'normal' at my first follow up so they bumped me up to 150. I also was pleased to get rid of my initial endo and get in to see one who is well- known around here.


Saturday I woke up with an ear infection and have been feeling 'off' since then. I don't know how that would effect my thyroid but I have not been myself. The nurse practitioner I saw was shocked they let me get so hypo- she said they test weekly after surgery and schedule you for the week after you hit a TSH of 20. I HATE thinking I went through that last week of misery for nothing.
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Old 02-14-2010, 01:42 PM   #527
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March's Real Simple has an article about how your hormones affect you during different decades of your life. In the intro it says "Your thyroid controls your metabolism."

I'd just LOVE to give them a little lesson on what it affects BESIDES your metabolism. That got me thinking- I suppose because it's so highly curable, but you're forever seeing stuff about breast cancer, lung cancer, etc- little to nothing about your thyroid. It sure as heck had never occurred to ME before.
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Old 02-14-2010, 01:56 PM   #528
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Originally Posted by mrsklamc View Post
March's Real Simple has an article about how your hormones affect you during different decades of your life. In the intro it says "Your thyroid controls your metabolism."

I'd just LOVE to give them a little lesson on what it affects BESIDES your metabolism. That got me thinking- I suppose because it's so highly curable, but you're forever seeing stuff about breast cancer, lung cancer, etc- little to nothing about your thyroid. It sure as heck had never occurred to ME before.
Amen Micayla!! Not too long ago I read an article about some new actress on the show 24. She just had thyroid cancer surgery too. But I hated her one comment, something like "I had one of the better ones.!! OMG missy aka that actress, let me tell you. I saved it and feel like looking her up and firing off an e mail. Its not one of the "better" ones when you have stage 4 like me and on top of that the rare variant!1 Oh well, at least thyroid cancer got a little press, so I should be positive, Hmm, maybe if we all sent her e mails we could get her to be a spokesperson?? What do you think?? On another note I am going to the surgeon for a 1 year check up tommorrow. I am going to be talking prognosis. I assume he will say nothing as usual. Happy Valentines Day everyone.
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Old 02-14-2010, 02:16 PM   #529
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I did see that article. I don't watch 24 but my friend thinks her character is going to die soon.

It struck me how differently people deal with things. She said she is still in therapy a year later. Therapy never occurred to me personally. Maybe if it was more like yours, LuvMaryPoppins, or if I had been diagnosed when I was younger and still thought I was invincible.
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Old 02-14-2010, 03:47 PM   #530
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Hi everyone,

I had my surgery this past Weds. (2/10) as planned, and am doing pretty well.

We were worried at first because the Philadelphia area had 2 back to back 24 + inch snowstorms, but I talked to the doctor's office the before and we agreed that we'd both make it to the hospital. Luckily, people scheduled for the OR before me cancelled because of the storm, so I got to go earlier than originally planned.

The surgery itself lasted about 2 hours longer than they expected (about 4.5 hours). I don't remember the doctor saying why other than "that thyroid was really ugly", but I will find out at my follow up. The first night in the hospital was really rough. My voice wasn't coming as quickly as the doctor expected, although he was sure he preserved the laryngeal nerves. I think part of the problem was that my back was SO sore from being in a bad position during the surgery and then not being able to get into a good position in the bed. I couldn't get the fluid coughed out of my lungs. Weds. was a long night. I know someone on here has said they went home a few hours after their surgery. There was NO WAY I could have, even if I wanted to. Also, they drew blood every 6 hours or so (calcium checks). So, I wonder how that worked for the person who went home right away.

By Thurs. morning I felt significantly better. My throat was very very sore because of the breathing tube, and so I could only eat a bit. Swallowing was hard, but as the day progressed it got much better. Interestingly, this didn't seem to have to do with the incision, but the length of time and position of the breathing tube.

I did come home late Thurs. afternoon. The dr. said I could stay at the hospital Thurs. night if I wanted to, but I needed to get home where I knew DH could get me in a comfortable position. Once I was all propped up and really clearning my lungs my voice came back to about 70% strength I'd say. They did send me home with a spirometer to continue to work on my lungs.

They sent me home with percoset, but the pain hasn't been too bad. I have taken I think 4 since Thursday. (It's late Sunday afternoon now) I am eating almost normally. My throat still doesn't feel 100%, so I'm taking it a bit easy.

My energy is fair. I am mostly laying around resting, but am up every so often and am able to shower, etc. I started the synthroid (125 mg) today. So, we'll see how that goes.

In terms of work, I scheduled myself off all week (I am self employed). I couldn't drive yet, I'm sure because I can't yet turn my head fully each way. But, I bet I will be able to in several days. I just don't want to rush anything. I probably COULD be catching up on paperwork, etc. But, I don't think I will. LOL

So, now that I've been through the surgery (near total, he said he left a tiny bit of thyroid on each side) I'd be happy to answer any questions for people facing it. I look forward to continued support as my levels get regulated, etc.

One thing, so silly I know, that suprised me, was that I needed heparin shots in my stomach every 12 (or was it 8?) hours in the hospital. It wasn't bad, but the thought of it skeeves me out, and I had about 4. Unpleasant and surprising, but not a giant deal.
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Old 02-14-2010, 05:08 PM   #531
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Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot. Wishing you all the best.
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Old 02-14-2010, 05:17 PM   #532
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Originally Posted by luvmarypoppins View Post
Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot. Wishing you all the best.
Huh. I didn't have heparin at all- they didn't say anything about it either. But they had these boots squeezing my legs so maybe that's why.
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Old 02-14-2010, 06:53 PM   #533
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Huh. I didn't have heparin at all- they didn't say anything about it either. But they had these boots squeezing my legs so maybe that's why.
I had the boots too!! Actually, I thought they were kind of relaxing.
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Old 02-14-2010, 06:57 PM   #534
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Mari - glad to hear that your surgery went well and you are on your way to healing and recovery. Do you have the staples and drain? My cousins ds goes to univ. of the sciences and they said they got a ton of snow up there! I refuse the heparin shots, after they gave me one in my upper arm I broke out with huge black and blues. They think I could also have some kind of clotting disorder or I am sre some other rare or strange thing that I dont want to know about at this time. I know the heparin is standard post surgical protocol. I guess I refuse to go into the protocol box, so I just get up and walk around alot. Wishing you all the best.
No staples or drain. I guess I have regular stitches that will desolve on their own (if they were staples, they wouldn't do that, right?). It's all covered in steri strips at the moment. They had a thick dressing on it for about 18 hours in the hospital.

I didn't really know anything about heparin before going in, and so hadn't considered the possibility. It wasn't terrible, and I have a slight fear of blood clots (irrational as I have no risk factors that I'm aware of), so it wasn't something I was prepared to refuse. It was fine, just surprising. They did say giving it in the stomach causes better absorbtion and less pain or chance for bruising. So, it was fine. I really was in no condition to walk for nearly 20 or more hours, so in the end it probably was a good thing to have.
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Old 02-15-2010, 12:14 PM   #535
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Originally Posted by MariDisney View Post
I know someone on here has said they went home a few hours after their surgery. There was NO WAY I could have, even if I wanted to. Also, they drew blood every 6 hours or so (calcium checks). So, I wonder how that worked for the person who went home right away.
I think that was me you're referring to. My surgery was at 7:30 a.m. and I left the hospital by 11:30 a.m. I had no drains or staples, my incision was about 3 inches long and very thin. I only wore a bandage for a few days. I was doing work from home that same afternoon, I felt fine. The next couple of days I was a little sore but that's it. I had a great surgeon. He said that he has done more thyroidectomies than almost anyone else in the area.
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Old 02-15-2010, 12:46 PM   #536
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Do you guys really not feel your weight is affected by the synthroid? Everything says that it doesn't affect it but my body sure seems to do weird things it didn't do before my surgery.
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Old 02-15-2010, 12:50 PM   #537
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I think that was me you're referring to. My surgery was at 7:30 a.m. and I left the hospital by 11:30 a.m. I had no drains or staples, my incision was about 3 inches long and very thin. I only wore a bandage for a few days. I was doing work from home that same afternoon, I felt fine. The next couple of days I was a little sore but that's it. I had a great surgeon. He said that he has done more thyroidectomies than almost anyone else in the area.
Yes, Shari...I think I was referrring to you.

Just curious if they checked your calcium? That seemed to be a primary concern and I had at least 3, maybe 4 blood draws over the 24 hours after the surgery to make sure my levels were stable.
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Old 02-15-2010, 02:02 PM   #538
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Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!

Now - I have a question regarding the thyrogen. My endo didn't decide I needed RAI until December, after my surgery in March. Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December. Told me thyrogen worked really well for me the first time - TSH was over 200!! Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks. Has anyone else had that problem?? After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired.

Anyway - I have been on the same dosage of levothyroxin since before my surgery. I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have. Is this normal? or should my endo have tested me 6 weeks after RAI??

Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!

Just info from others who may have had the same experience would be nice! Thanks.
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Old 02-15-2010, 02:09 PM   #539
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Mari - I had my 2nd thyroid surgery last March and it took me 2 weeks to get back to where I didn't have to have a nap every couple of hours!

Now - I have a question regarding the thyrogen. My endo didn't decide I needed RAI until December, after my surgery in March. Had the first round of thyrogen for "investigative" purposes - scan in November, then thyrogen again for RAI purposes in December. Told me thyrogen worked really well for me the first time - TSH was over 200!! Second round - the second shot made me so nauseus and I felt horrible for the next 2 weeks. Has anyone else had that problem?? After two weeks then I could only sleep for 3 hours at a time, then I'd wake up and couldn't go back to sleep, then feel so tired.

Anyway - I have been on the same dosage of levothyroxin since before my surgery. I haven't been tested again since the RAI - and I'm having almost every hypo symptom you can have. Is this normal? or should my endo have tested me 6 weeks after RAI??

Unfortunately, my endo left town 3 weeks ago, and I'm going to have to call his partner, whom I've never seen!

Just info from others who may have had the same experience would be nice! Thanks.
Wow. Seems like this is more of an art than a science? I don't understand why they would do that...They should have known right away if you had cancer, and if so why would they wait to do RAI so long? Weird.
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Old 02-15-2010, 02:31 PM   #540
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My whole thyroid issues have bizarre to say the least!

First pathology didn't say it was cancer - it wasn't until 6 weeks later that I got that diagnosis. Let me give you a pre-trip . . . LOL

In 2003 I had the right side removed - was diagnosed with thyroid nodules (hot) in 1990. After doing so much research - I really think I had thyroiditis in 1986 - while I was in college - was treated for a throat infection. Anyway - I battled with up and down thyroid levels for those 13 years. Finally my TSH and T4 were going in the same direction - UMMM not good! So, dr said lets take it out. Fine - left side was very small and no nodules so it was left.

After first surgery was the first time in my life I had ever had normal cycles!! I was on the same dosage from 2003 until 2008. My endo (I've gone through 4) again left town (bad joke in my town) so was back to my GP to keep my meds. He did test me every 6 months - which I was very glad for. In June 08 I went for my semi-annual - and my TSH levels were down from 1.5 to 0.3. Hey I was feeling pretty good. Instead of lowering my meds, he decided to leave it up and maybe it would help lose weight. And I did lose about 15 lbs. But in October I started feeling HORRIBLE!! Passed out at work, heart rate through the ceiling, no energy, you all know the drill. When I went in December for my semi-annual, my TSH had shot up to 3.9, and he increased my meds.

Also did a radio-stress test - which showed a "hyperdynamic left ventrical" - cardiologist said it was nothing to worry about. I finally decided I needed to see the new endo. Best decision I ever made. First ultrasound - NODULE on the small (no longer small) left side. He said we would watch it, do another ultrasound, etc. I immediately asked for surgery. Told him with my long battle on the right side and I didn't want to go through that again.

When the pathologist report came back, he sent it to Mayo - because there was an "iffy" statement. Came back papillary - 1.5mm - yes not cm - mm. Dr kept asking if I just had a gut feeling - since I asked for surgery! He said since it was so small that RAI wasn't necessary. But did do a cancer markers blood test - which came back elevated. Had another one in August - more elevated, and then scan in November - showed activity. So - RAI.

Now I'm feeling horrible again - so I'm figuring need to up the meds. And see ANOTHER endo. Hoping he will let me keep my TSH below .5 like my previous dr - that's when I feel the best. Could it be that the left over tissue was actually producing T4??

So, yea - it's been an "art" form! LOL
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