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Old 06-28-2008, 10:16 PM   #1
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mookiettt HB User
Newbie - TT for Substernal Goiter

Hello all - I have been reading peoples various experiences for the past week and have gained a wealth of information from this board. I do have a couple of questions but first a little history of my situation. In February I went to my GP with a servere case of bronchitis and in doing a chest X-ray they found I had an enlarged thyroid with a 13.5cm substernal goiter. I was then sent to an Endo in March who determined I was hyperthroid and the only course of action was to have a TT as they could not do a biospy of the goiter because it was so deep in my chest. (by this time I had lost 15 pounds, was hot all the time, my hair was starting to fall out and I was having a hard time breathing). I finally got in to see the surgeon in April and after having an ultrasound and cat-scan was determined he could do a neck incision TT.(By this time my hair was really falling out, I had lost 27 pounds and was hot and tired all the time) I had the TT on May 21st and had to stay in the hospital for three days because of a calicum level of 69. I was finally sent home with a level of 79 and taking Calcitrol and 4000 mg of calcium a day. A week later the path report came back benign and my Surgeon started me on 175 mcg of Synthroid.

After four weeks my Surgeon has weaned me down to a vitamin pill and 1500mg of calicum for my calcium counts and after four weeks of taking synthroid I am finally starting to get over feeling cold and tired all the time and just feel cold in the mornings and my hair is still falling out.(Does this ever end?) I have read on here that peoples counts bouce up and down and that doses of Synthroid have to be constantly changed. Is this true for TTs as there is no thryoid to fluctuate? Also would appreciate a little guidance as to what questions I should aske my Endo when I see him in mid July. I have heard he takes into consideration the TSH and the free counts and is also willing to use Armour. Thanks for you help!!!

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Old 06-28-2008, 11:29 PM   #2
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tygwyn HB User
Re: Newbie - TT for Substernal Goiter

Wow 175mcg is a big dose to start you on!! After my TT for retrosternal goiter and Hashi I was only put on 100mcg, and was then upped to 125mcg after 4 weeks. I'm 18 months post TT and am not stabalised (although my Endo thinks I am....hence me seeing a new Endo next month!).

I also had problems with my calcium, and was on rocaltrol plus 12 caltrate a day initially! I was weened off them within about 4 months but things have gone a bit pair shaped now and my calcium levels have been dropping. I'm now taking just 2 Caltrate a day so its not too bad.

From my understanding, it is far easier to stabalise you without a thyroid, than it is with a thyroid.

Good luck with everything and feel happy in the fact that you're not alone
__________________
Rach xxxx

Total Thyroidectomy Oct 06 due to Massive Multi Nodular Goiter and Hashi
Adrenal Fatigue
180mg NTH
28mg HC
2 x Caltrate

Rach xxxx

 
Old 06-28-2008, 11:32 PM   #3
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DR37 HB User
Re: Newbie - TT for Substernal Goiter

Welcome to the forums! Sadly, I'm still kinda new myself, but I had to post when I saw your story. I CANNOT IMAGINE having that size goiter stuck inside me! Man, was that painful? I thought mine were bad, and the biggest one's 4.5 cm!! Grats, though, on the successful surgery. I am going to have TT on Monday, so I'm not sure about changing the lvl of meds like you're talking about. But I hope you're feeling better and that the hair starts staying in the head, lol. No idea if that changes, but I hope it does too!

 
Old 06-29-2008, 05:39 AM   #4
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Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
Re: Newbie - TT for Substernal Goiter

Wow, that was big! It must have been a challenging surgery.

Depending upon your size, you may need a higher dosage. I'm a bit hyper on 175, (I'm 5foot 2) but I'm on it for thyroid cancer, but my mother in law whose thyroid was removed for other reasons, and she's 5 foot 8 and a larger size woman, and she's on about 225.

It took me about 4 months to get to the right dose, and several more to feel normal. My aunt had her thyroid removed, and the surgeon warned her that it can take more than a year to feel normal on medication---it really takes time.

I've been on the same dose for 3 years, and I feel fine on it, with no thyroid. So I think it does take time to get there, but once you do, you should be okay for a while.

 
Old 06-29-2008, 11:56 AM   #5
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DR37 HB User
Re: Newbie - TT for Substernal Goiter

A question for all three of you, Reece, Ty and Mook:

Are you all seeing an endocrinologist after the TT? I don't have one yet, I'm still working with an ENT. Should I be shopping around for an endo?

 
Old 06-29-2008, 02:27 PM   #6
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tygwyn HB User
Re: Newbie - TT for Substernal Goiter

Quote:
Originally Posted by DesertRose77 View Post
A question for all three of you, Reece, Ty and Mook:

Are you all seeing an endocrinologist after the TT? I don't have one yet, I'm still working with an ENT. Should I be shopping around for an endo?
I was seeing an Endo, but I'm now moving on to a GP who has come highly recommended in the Thyroid field. Any Endo I've had hasnt been worth a lot!
__________________
Rach xxxx

Total Thyroidectomy Oct 06 due to Massive Multi Nodular Goiter and Hashi
Adrenal Fatigue
180mg NTH
28mg HC
2 x Caltrate

Rach xxxx

 
Old 06-29-2008, 09:12 PM   #7
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mookiettt HB User
Re: Newbie - TT for Substernal Goiter

Quote:
Originally Posted by tygwyn View Post
Wow 175mcg is a big dose to start you on!! After my TT for retrosternal goiter and Hashi I was only put on 100mcg, and was then upped to 125mcg after 4 weeks. I'm 18 months post TT and am not stabalised (although my Endo thinks I am....hence me seeing a new Endo next month!).

I also had problems with my calcium, and was on rocaltrol plus 12 caltrate a day initially! I was weened off them within about 4 months but things have gone a bit pair shaped now and my calcium levels have been dropping. I'm now taking just 2 Caltrate a day so its not too bad.

From my understanding, it is far easier to stabalise you without a thyroid, than it is with a thyroid.

Good luck with everything and feel happy in the fact that you're not alone
My surgeon said it may be a while before I get off the calcium as he said he found only one of my parathyroids and could only save half of that one and it may take a while for it to kick in if at all. Hope it starts to work pretty soon although taking three 500mg tums and a vitamin a day has not been too bad.

My surgeon and Endo seem to work as a team and they thought the 175 mcg was a good starting point for Synthroid as I am over six foot and weighed 220lbs at time of surgery and thought we could do adjustments from there if necessary. The dose must not be too far off as I am only a little chilly in the mornings and had the enery to a lot of yard work over the last two days. If only this danged hair would stop falling out. I am sure I will have many more questions before this is over and thank you very much for your support.

 
Old 06-29-2008, 09:25 PM   #8
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mookiettt HB User
Re: Newbie - TT for Substernal Goiter

Quote:
Originally Posted by DesertRose77 View Post
A question for all three of you, Reece, Ty and Mook:

Are you all seeing an endocrinologist after the TT? I don't have one yet, I'm still working with an ENT. Should I be shopping around for an endo?
I guess I am lucky as when my GP found my problem he sent me to an Endo. My Endo and ENT work together as a team and now that the surgery is done I am going back to the Endo to stablize the Synthroid dose although the ENT is the one who is still treating the calcium problem.

 
Old 06-29-2008, 09:37 PM   #9
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mookiettt HB User
Re: Newbie - TT for Substernal Goiter

Quote:
Originally Posted by DesertRose77 View Post
Welcome to the forums! Sadly, I'm still kinda new myself, but I had to post when I saw your story. I CANNOT IMAGINE having that size goiter stuck inside me! Man, was that painful? I thought mine were bad, and the biggest one's 4.5 cm!! Grats, though, on the successful surgery. I am going to have TT on Monday, so I'm not sure about changing the lvl of meds like you're talking about. But I hope you're feeling better and that the hair starts staying in the head, lol. No idea if that changes, but I hope it does too!
I guess I really didn't comprehend what 13.5cm meant until the surgey was over (which took nearly four hours) and he told my wife the goiter he removed was the size of a small grapefruit. There really was not a lot of pain although what I thought was a disc causing back pain between my shoulders has now gone so maybe it was causing that problem. The biggest problem I had was I didn't really realize how hard of a time I was having breathing until the goiter was removed - I feel like a different person as getting my breath is much easier.

 
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