# TT yesterday



## DustingMyselfOff (May 17, 2013)

Hi All.
Just an update.... had my total thyroidectomy yesterday and it wasn't quite the way I had planned it, but I'm glad it's over. First, there was a LONG delay. I was to get there at 10:30 a.m. for a 12:30 surgery. They had me in my pre-op room by 11:00 and we waited for the anesthesiologist to come take me to surgery. And waited and waited. Apparently the two parathyroid surgeries scheduled before me both were more complicated than anticipated so mine started 4 hours late. I was so ready and eager when I got there but after 6 hours of sitting and waiting in pre-op, I wasn't so sure anymore. Not only was it nerve-wracking having all that time on my hands but having not eaten or drank since midnight before, I was hungry and dehydrated (not to mention caffeine withdrawal).

Finally got into surgery about 5:00, done about 8:00 p.m. Since I had once vomited after a procedure years ago they put three meds in my IV to prevent it but it didn't work. When I got to my room I couldn't keep down my pills, a cracker, or even water for about 12 hours. And wow....they come in and check on you every 15 minutes (which is probably a good thing) but not when you're tired, confused, miserable, and sick. Lousy night to say the least.

This morning (after getting maybe one hour sleep) they urged me to try some food and this time it stayed. Checked out about 11:00 a.m. .... 15 hours post surgery. Today wasn't so bad.... it was great to be home and not have people checking and poking and prodding and to be in my own bed. I'm not as sore as I thought I would be but tomorrow may be worse.

I'm not expecting miracles but from all I've read here I'll probably feel OK for the next few weeks before I have a crash. Hopefully it will be short-lived. I will start Levo on Sunday (5 days post TT) at 125 mg.

Stay tuned...... hoping this is the beginning of a new me!
Sue


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## melissafitz (May 5, 2013)

Wow, what a ride you have been on! I'm sorry that things were so difficult, but I hope you feel better very soon!


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## joplin1975 (Jul 21, 2011)

I'm sorry things were a bit more difficult than planned but I'm glad you sound like you are doing better.

I got out of surgery at 8pm, too. It really screwed my sleep schedule for a couple of days. 

Take care!


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## suzanna (May 13, 2013)

I am so glad that you are home and the surgery is behind you! Hopefully, you will continue to feel good and not experience a crash. Take it easy and pamper yourself as much as possible.


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## StormFinch (Nov 16, 2012)

Anesthesia sickness, ugh. But you're on the other side now, congrats!

I have absolutely no idea what time I got out of surgery. The hospital was short on beds so I spent what felt like an eternity in recovery. I do know I made it to my room long after dinner (thank goodness for the floor nurse's hoard) and spent most of the early morning hours watching reruns of Once Upon a Time on Netflix. My sleep schedule was already messed up so no harm no foul. 

Keeping my fingers crossed that there won't be a crash. Hopefully you do well with levo, and the amount they've started you on looks good.


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## DustingMyselfOff (May 17, 2013)

Hi there.
Day 11 post TT so I thought I'd provide an update. Since I have been searching everyone else's journals to see what they've gone through, what to expect when, etc. and find it so very helpful (and comforting), I thought I'd return the favor.

The first week after surgery was a piece of cake. There was very little pain from the incision and I couldn't believe how "normal" I felt for having just undergone surgery. There were a couple of mild bouts of nausea and headache, but very mild and very short-lived. My body and mind were very eager to be up and about doing chores and errands but I tried to listen to everyone's advice and not overdo it. The only problem I had (and it wasn't an unfamiliar one) is that I could NOT sleep, even though I knew I should. I would feel weary at times but sleep was not coming. I'm guessing that's partially due to the trauma of surgery and the upset to my hormonal system and maybe from lying around for days which I am NOT accustomed to.

Regarding activity, I went out for a short visit to my sister's 3 days post surgery, went shopping days 6 and 7, and visited at a friend's house on day 9. Felt calmer and happier than I have in years.

Day 10, took a little step backwards. Woke up grumpy and irritable, tired and unmotivated. Gave into it and did nothing, but as the night wore on I became anxious and had hyper symptoms. Was able to get some sleep but kept waking up very hot and sweaty. Heart rate was back up to about 90 last night so I guess this was a hyper spike?

Not sure what that's all about but I'm guessing that's normal. I've probably still got natural hormone in my system and perhaps my Levothyroxine (125 mcg) that I started on Day 5 is kicking in?

Today, Day 11, I am feeling OK, but probably more nervous and antsy than I have in the past week. Still not as bad as before my TT, but I remember these lousy feelings and can't wait till we're done with them.

So that's it..... scheduled to attend a large family picnic this afternoon and will definitely make an appearance but will judge my length of stay by the way I feel. This surgi-strip on my neck is a wonderful excuse to bow out of situations I don't want to be in. Perhaps I'll save it and use it in the future. :winking0051: 
Sue


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## Mac409 (Jul 22, 2013)

Thanx for your update. It really helps to know what's ahead. I am scheduled for 8/7. One week. I'm so worried and trying my best to stay calm. For some reason I have spent my day today crying.


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## DustingMyselfOff (May 17, 2013)

Awwwwww, so sorry you had a bad day, but it's not really unusual... your nerves, along with your thyroid, are wreaking havoc on your emotions. I wish I could wave a magic wand over you and make you as eager for surgery as I was. The two weeks before my appointment I was happily counting the days and excitedly telling people that I was so looking forward to it!

Are you having second thoughts about doing it or is it just general anxiety about the surgery and the anesthesia? If you're definitely going through with the surgery, put your faith in your surgeon (and your Higher Powers) that it will all be fine. Worrying is a wasted emotion (I know, easier said than done).
Sue


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## partyofsix (Jun 19, 2013)

Thank you for sharing your recovery story. This made me feel so much better, as my TT is tomorrow. When the hospital called this afternoon to give me my arrival time I was disappointed that it is not until noon. I was hoping it was going to be like 5am so that I could just not worry about this anymore. )

I am also excited to start feeling better. I know that it may be a while until I get my meds all figured out, but the hope that I will feel 'normal' soon is a great feeling!


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## KarenB (Jul 19, 2013)

partyofsix, my second surgery wasn't scheduled until the PM either, and the morning felt like a million years. My recommendation is to sleep as late as possible and watch bad TV


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## joplin1975 (Jul 21, 2011)

I didn't get into the OR until about 4:00 or so...I can totally relate. I think Karen has great advice.


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## partyofsix (Jun 19, 2013)

Thanks you all! I wanted to sleep in but of course I couldn't...lol. Just watching tv with the kids waiting to leave. I am sure all will go well. If not, I'm in the best place to have something go wrong....the hospital! Pam


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## Velcro (Jul 26, 2013)

Good luck today and I'm sending good thoughts for a speedy recovery.


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## joplin1975 (Jul 21, 2011)

Good luck today!


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## Andros (Aug 26, 2009)

DustingMyselfOff said:


> Hi All.
> Just an update.... had my total thyroidectomy yesterday and it wasn't quite the way I had planned it, but I'm glad it's over. First, there was a LONG delay. I was to get there at 10:30 a.m. for a 12:30 surgery. They had me in my pre-op room by 11:00 and we waited for the anesthesiologist to come take me to surgery. And waited and waited. Apparently the two parathyroid surgeries scheduled before me both were more complicated than anticipated so mine started 4 hours late. I was so ready and eager when I got there but after 6 hours of sitting and waiting in pre-op, I wasn't so sure anymore. Not only was it nerve-wracking having all that time on my hands but having not eaten or drank since midnight before, I was hungry and dehydrated (not to mention caffeine withdrawal).
> 
> Finally got into surgery about 5:00, done about 8:00 p.m. Since I had once vomited after a procedure years ago they put three meds in my IV to prevent it but it didn't work. When I got to my room I couldn't keep down my pills, a cracker, or even water for about 12 hours. And wow....they come in and check on you every 15 minutes (which is probably a good thing) but not when you're tired, confused, miserable, and sick. Lousy night to say the least.
> ...


So very good to hear from you and I am so sorry for the delay. That had to be nerve wracking even under the best of circumstances.

Glad you are home and follow instructions to a T; pamper yourself to the hilt. You deserve it!


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## DustingMyselfOff (May 17, 2013)

Had my post-op visit with surgeon today... she removed the steri strip and I finally got to see my incision. Looks great!

The past few days I've had lots of anxiety and heat intolerance, in addition to insomnia so I think between the Levothyroxine I'm taking and the natural hormone still coursing through my veins, I'm hyper right now. This too shall, pass and soon I'll probably be feeling sluggish and sleepy. Since I'm staying home from work another week I am going to try to start walking a little each day (feeling muscle weakness) and hopefully that will help me to start sleeping, too.

So far, no regrets. I know it won't be perfect any time soon, but it took me years of being sick to get here.... it's not going to get better overnight.
Sue


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## joplin1975 (Jul 21, 2011)

DustingMyselfOff said:


> So far, no regrets. I know it won't be perfect any time soon, but it took me years of being sick to get here.... it's not going to get better overnight.


Exactly. I'm glad you are doing well...it can only get better from here on out.


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## Mac409 (Jul 22, 2013)

It's nerves about how my life will change after my TT.(Wednesday ) I feel great now. If it wasn't that these nodules are suspicious and the cells will become cancerous , I would have never know. I know I have to do this I just hope I will be feeling as good as I feel now


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## joplin1975 (Jul 21, 2011)

There is often a period, post-op, when meds need to be regulated and you might not feel on top of your game, but I think for the vast majority of us, we feel really good after we find the right dosage and medication. I can't say my life has changed much...or, if it has, it's gotten better.


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## Octavia (Aug 1, 2011)

Mac409 said:


> It's nerves about how my life will change after my TT.(Wednesday ) I feel great now. If it wasn't that these nodules are suspicious and the cells will become cancerous , I would have never know. I know I have to do this I just hope I will be feeling as good as I feel now


Mac, my thyroid removal was relatively "sudden" (as opposed to being unwell for years like many posters here). I am the same person I was before, except now, I'm not always cold! Really, other than the small scar on my neck and taking a couple of pills every morning, my life is no different!


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## KarenB (Jul 19, 2013)

Octavia said:


> Mac, my thyroid removal was relatively "sudden" (as opposed to being unwell for years like many posters here). I am the same person I was before, except now, I'm not always cold! Really, other than the small scar on my neck and taking a couple of pills every morning, my life is no different!


Octavia, this was my experience too! I was fine, and then I wasn't. From diagnosis to surgery was a total of 6 weeks - a total whirlwind. I felt the cold SO MUCH before all of this - I am really hoping this is reversed for me too! 

Mac409, I am early days in all this, but I have a strong confidence that it will all be okay. I know there will be challenges, and feeling really good won't take 5 minutes, but ultimately I know it's going to be okay.


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## Eliza79 (Jul 23, 2013)

Good luck with your surgery! I hope everything goes well. I think a PT or TT is like a lot of surgeries, you wake up sore and wishing you felt normal but then, as time passes, you do start feeling more like yourself. My nodule is probably benign but I am still glad to have had the surgery. I spent a lot of time worrying and wondering and can hopefully move on with life now. Also, some of the symptoms I had before surgery--swallowing issues, ringing in ears, etc--are gone now. And no more lump!


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## DustingMyselfOff (May 17, 2013)

Been a long time since I've logged on and posted so thought I'd drop by for those who like to hear what life is like 1-3 months after surgery.

It has it's ups and downs, as everyone warned me it would. I was started on Levothyroxine (125 mcg) 5 days after surgery and 4 weeks after surgery my labs said I was still slightly hyper, but it was too soon to really call that valid. About 3 weeks later I started feeling MORE hyper so had my blood drawn and yes, my TSH was still non-existent. The endo dropped my Levo from 125 to 112 and I have been at that dose for 4 weeks.

The odd thing is, I am feeling MORE hyper now than I had a month or two ago. I would think that dropping my levothyroxine would cause me to start feeling hypo, but it's not. Still having stomach issues, insomnia, and lots of anxiety. I know it's been said that it's the "change" in levels that causes these symptoms and that when things STAY at a certain level for a while the symptoms should improve, but it's so hard waiting it out. If I don't feel any relief by Monday I will have blood drawn to see what's going on.

Anyone else suffer when their dosage changes, even if it's supposedly bringing you in the right direction? Is 4 weeks a point where I should be feeling this? I thought I would be getting "stable" at 4 weeks but maybe with Levo's long half-life it takes longer?
Sue


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## Lovlkn (Dec 20, 2009)

DustingMyselfOff said:


> Been a long time since I've logged on and posted so thought I'd drop by for those who like to hear what life is like 1-3 months after surgery.
> 
> It has it's ups and downs, as everyone warned me it would. I was started on Levothyroxine (125 mcg) 5 days after surgery and 4 weeks after surgery my labs said I was still slightly hyper, but it was too soon to really call that valid. About 3 weeks later I started feeling MORE hyper so had my blood drawn and yes, my TSH was still non-existent. The endo dropped my Levo from 125 to 112 and I have been at that dose for 4 weeks.
> 
> ...


You only mention testing TSH. You absolutely need to insist they test your FT-4 and FT-3 and only dose off that.

If you are feeling hyper - you can skip a day or 2 of medication but doing so without the proper labs is not a good idea.

What other supplements do you take?


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## kristiemarie (Oct 7, 2013)

TSH is totally irrelevant to those of us without a thyroid. Your TSH could be 1000 and it wouldn't matter because there's no thyroid to stimulate!

Free T3 is the big dose measurer. You can have normal Free T4 but still be hypo because you are not converting the T4 to T3. And really, the best measure is how you feel.


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## DustingMyselfOff (May 17, 2013)

Thanks for the replies. My doc is on the team that says T3 testing is no longer needed... he only does TSH and free T4. I have been very pleased with him for the past 7 years but now that I don't have a thyroid I may have to find a new endo. When I have asked him why he doesn't test for T3 he gives me very detailed and what seems like valid reasons why that testing is irrelevent and then starts pulling out current medical publications to validate it, and this week I read a book that pretty much agreed with him (shrug).

If I still feel "unwell" in a few weeks then I will insist on the tests. He said that he does it when patients are adament and even lets them try the addition of T3 meds if they insist but he claims it has never proven successful.

I guess what I really wanted to know is if it's normal to feel both hyper and hpo symptoms whenever changing a dose. I imagine it is to be expected because I am remembering back to my good old PMS days and I went through all kinds of symptoms monthly when hormones shifted.

I'm guessing my body is converting T4 into T3 fine or I wouldn't be feeling hyper, correct? I'm still really new to life without a thyroid, but if I don't feel comfortable with this endo's treatment of non-thyroid patients I already have another one researched and will call for a consult to see how she treats post-TT patients, what she tests for, etc.

Thanks for the replies.
Sue


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## kristiemarie (Oct 7, 2013)

Well, if you feel hyper on 112, you're probably hyper on 112.

I still don't see how T3 isn't important. It's the hormone that makes you feel the way you feel. What was the reasoning behind it? I'm curious.

I also can't see how TSH is so important. What is suppose to be learned from knowing your TSH that can't be seen via your T4? TSH production is slowed if T4 is high, increased if T4 is low. So we already know that if your T4 is high, your TSH will be low and if your T4 is low, your TSH will be high, hence the near zero numbers many of us have during our most hyper.

You are obviously a good converter. I would think he'd want to test T4 AND T3 to make sure both are coming down satisfactorily. And if he wants to test TSH on the side, well whatever.

I know that most endos only test T4 (and TSH sometimes) post TT unless there are complaints from the patient and then most will test T3 to rule out poor conversion. Maybe you are just a super converter. Maybe some thyroid stayed in tact? Maybe you'd do better on a different drug. Have you considered Tirosint? It's much more exact of a dose than Levothyroxine tablets. Have you considered Synthroid or another brand name? I've heard people having issues with generic.

So much to learn about this crap, it's awful, isn't it?


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## DustingMyselfOff (May 17, 2013)

Yes, it can be very challenging.... so many variables and so many factors to consider. And every change we decide to make takes so much time to "settle in" that our experimenting to find our sweet spot (and the right med) can take many, many months.

I think my body is just very sensitive or in-tune with any slight fluctuation in hormone levels. The past several days were pretty hyper but today I am drastically better. Regardless of what tests doctors do and what drugs we are on, I think having our hormone levels stay stable for a period of time is probably critical to feeling good. Of course the level has to be a good one for us, but once it's at the same level for a while I suspect we feel much better.

What a ride, huh?
Sue


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## Lovlkn (Dec 20, 2009)

Free T-3 lets you know if you are properly converting your T-4 replacement medications.

Endo's were horrible at managing my replacement post TT. Find your self a good GP or DO who is willing to work with you.


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