# If you had to to it all over again...



## Carmen315 (May 17, 2013)

would you get a TT? Do the benefits of a TT outweigh the issues you had (if any) before you had surgery to remove your thyroid?


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## joplin1975 (Jul 21, 2011)

Abso-freaking-lutely. Without hesitation or qualification.

*All* my pre-TT symptoms are gone. All of them. Every single one of them. I take a little pill every morning and I have my life back.


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## Andros (Aug 26, 2009)

Carmen315 said:


> would you get a TT? Do the benefits of a TT outweigh the issues you had (if any) before you had surgery to remove your thyroid?


For real!! I wish I had gotten rid of my thyroid years sooner!!! Keeping it was a slow and agonal death!


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## Carmen315 (May 17, 2013)

I'm so jealous! I have the horrible symptoms plus the every day pill. I'm so ready to get this thing out.


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## StormFinch (Nov 16, 2012)

I once said somewhere on here that if I had to have a dozen TTs to feel the way I do now I'd do it, and I meant it. It's like night and day.


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## webster2 (May 19, 2011)

Yup, hands down. If the option had presented itself the first time around, I would have gone with the TT.


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## Carmen315 (May 17, 2013)

StormFinch,

It's crazy you're on 90 mcg of Armour, feel great and no thyroid. I'm on 60 mcg Armour, feel like crap and have my thyroid. Blah


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## StormFinch (Nov 16, 2012)

It does sound crazy Carmen, but I've been in your shoes. During my last hypo phase I was on the exact same amount of Armour and still felt like complete garbage. Then I went back to hyper.

Now want to see something completely crazy? With no thyroid for the last 9 months and on 90 mg of Armour my numbers look like this:

Free T3 2.91 (2.30-4.20)
Free T4 1.11 (0.89-1.76)
TSH... (drumroll please) 0.051

I've run into an exercised induced exhaustion wall (I feel fine as long as I don't try to work out) so my doc upped me by another 1/2 grain just today. Needless to say, I consider myself the poster child for IGNORE THE FREAKIN TSH! lol


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## Quilliac (Jun 9, 2013)

We are considering if surgery is the best option for our daughter who has Graves' disease and is proving difficult to stabilize, so for me I'm asking that knowing what you know about how different you feel after TT would you still recommended if if it was a child? 
I'm just wondering if we are going to struggle on for the next however many years and my daughter feel so up and down and then decide to do what the Endo is suggesting to do now! Any thoughts?? Sorry if I'm crashing in on the thread xx


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## jenny v (May 6, 2012)

If you don't mind my asking, how old is your daughter and how long has she been trying to stabilize?


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## StormFinch (Nov 16, 2012)

Jenny, Quilliac's daughter is 11 and they've been trying block and replace since April.

I'm guessing that isn't going so well Quilliac?

If it were me, being uncontrollable on meds and knowing what I know now? I'd have definitely wanted to go through the surgery at 11. Looking back, I'd have put either of my sons through surgery at that age if they were going through what I did. Doing my homework and finding the right surgeon made the procedure relatively easy, and having a good physician lined up made replacement relatively easy. That's not always the case for various reasons; some have to fight their insurance, some don't have insurance, some can't find a decent doctor nearby or mistakenly rely too heavily on their doctor's opinion, etc. However, if you study everything you can find on the subject, learn to be your own advocate, (or in your case your daughter's advocate) realize that doctors are actually our employees who can be fired, and don't except that the TSH test is the be all and end all of thyroid testing or the phrase "everything's normal", then it's going to make the whole process a lot easier.


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## Lovlkn (Dec 20, 2009)

> Needless to say, I consider myself the poster child for IGNORE THE FREAKIN TSH! lol


StormFinch -

I thought I held that title.

My last labs...

8/27/13 = about as perfect as my labs get
TSH .003 (.40-4.0)	FT-4 1.45(.82-1.77) FT-4 3.9 (2.0-4.4) T-4 6.7 (4.5-12.5) 125mcg +12.5/.25mcg Cytomel

10/11/12 
TSH .013 (.40-4.0)	FT-4 1.19 (.69-1.76) FT-3 2.7 (2.0-4.4) T-4 8.3 (4.5-12.5) 125mcg +12.5/.25mcg Cytomel

4/11/12 
TSH .006 (.40-4.0)	FT-4 1.18 (.69-1.76) no ft-3 run T-4 7.2 (4.5-12.5)
125mcg +12.5/.25mcg Cytomel

In case anyone notices the difference in the free's...
The only reason I can figure for the difference in labs is my calcium intake. I began taking my Unithroid at 1-3 a.m. and my ist Cytomel 5mcg at 5:30 and can actually see the direct correlation to calcium interference. in my 2012 labs

Difficult for me as I am osteopenia and have to take 3 x a day and am forced to space my cytomel due to the punch it packs for me.


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## Carmen315 (May 17, 2013)

Quilliac said:


> We are considering if surgery is the best option for our daughter who has Graves' disease and is proving difficult to stabilize, so for me I'm asking that knowing what you know about how different you feel after TT would you still recommended if if it was a child?
> I'm just wondering if we are going to struggle on for the next however many years and my daughter feel so up and down and then decide to do what the Endo is suggesting to do now! Any thoughts?? Sorry if I'm crashing in on the thread xx


You're more than welcome to hijack the thread.

I've felt that I must have had thyroid disease since I was around 11 years old. I distinctly remember being tired and sleepy all the time. Way more than my friends. I've trudged through and it's been quite difficult spending my life having to work so much harder than everyone else because of it. It's a hard decision but if she'll feel relief from the Grave's symptoms afterward, then I'd say that's your answer.


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## Quilliac (Jun 9, 2013)

I don't mind at all! 
My daughter is 11 years old, she was 10 when diagnosed so pretty young! 
This journey all started for us in March, her blood levels were really wrong and she lost a lot of weight in 10 days and her heart at rest was 130bpm, along with many other symptoms, since march she has been on bloke and replace therapy but still her levels are not in range. From what I gather we are close.


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## Quilliac (Jun 9, 2013)

It's just when I read about people who have had a TT say they feel "normal" again and I just really wish that for my daughter as she copes very well but I know she struggles and def doesn't describe herself as feeling normal.


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## StormFinch (Nov 16, 2012)

Lovlkn said:


> StormFinch -
> 
> I thought I held that title.


Lol Yep Lovlkn, you win. I get runner up though. 

Quilliac you might want to have this conversation with your daughter and let her have some input if you haven't already. At least that way she'll know in the future that she had a hand in her own care. I know 11 is kind of young to have to see a future with possible daily thyroid replacements, but I personally think it's probably better than trying to wait until she's older.

To give you some numbers on what you're looking at; according to studies the remission rates for pediatric Graves patients on antithyroid therapy is right around 30%, and relapse rates are 59% at 1 year and 68% at two. To even achieve the possibility of remission she's going to have to be on some amount of ADT for the next 18 months at the very least. (ADT course therapy in children needs to be longer than in adults.) I guess the big question is, do the two of you feel it's worth continuing to fight this fight, even with the possibility of having to revisit it?


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## Quilliac (Jun 9, 2013)

Thank you so much for your advice, the endo did ask Brodie at our last appointment and she said that she would want surgery as she is fed up! I also worry about her taking the carbimazole long term she is on 30mg a day which I think is fairly high for a child?? 
Brodie is very involved in her treatment as the dr feels its important to include her and for her to understand her illness as she needs to manage it for her future.


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## StormFinch (Nov 16, 2012)

It's really good that the doctor is including her. I rarely ran across one that did when mine were young, but then we dealt mostly with military doctors back then. Wishing Brodie the best (beautiful name btw!) whatever the two of you decide. 

Oh and yes, that's quite a bit of antithyroid, even for an adult. I would definitely be of the same mind in your shoes.


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## Quilliac (Jun 9, 2013)

I got a 2nd opinion as we live in France so wanted to speak in English with a dr and so I found an endo in a children's hospital and thankfully he is great! 
Thanks for your thoughts and wishes x


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## angel711baby66 (May 7, 2013)

I think I'm the only exception to the rule here because not one day goes by that I say or wish I had my thyroid back. I had a very large goiter and it was discovered when I went in for gall bladder surgery. Otherwise I would have never known it was there. My thyroid functioned fine and now that its gone...I hate every minute! I had a TT in April and I'm still trying to get my levels right. My case is much different where I didnt have any thyroid problems to begin with and if I did maybe my opinion would be different. But I swear I have even searched to find if there are any studies on thyroid transplants (yes thats how desperate I am). Even with knowing I had a goiter I wish I would have waited as long as possible before having it taken out. It might sounds silly because I was told of all the risks of leaving it grow but I would have let it as long as possible.


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## kristiemarie (Oct 7, 2013)

I'm still working on getting "normal" but I can tell you without hesitation that I feel like they removed something toxic from my body. I feel crappy, but in a different way. I am optimistic that once I stabilize meds, I will be back to feeling good.

I have had graves for 10 years. It went into remission for a long time and then came back suddenly and viciously. I can't go through that again. And a relapse is inevitable without RAI or surgery. I refused to poison myself so surgery was the best answer for me.

The question you always need to ask is whether it's the best option for YOU. I've heard horror stories from every corner of the earth. But I've also heard great stories of people getting their lives back. You have to weigh the risks and the rewards. I was willing to take the risk for the chance to get my life back.


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