# TT surgery on Sept 6, 2013 - Goiters crushing my Trachea



## Kenwood

Well, this Friday, Sept 6th is my Total Thyroidectomy. I'm excited as well as very nervous. I have a massive goiter on BOTH sides of my thyroid that has been slowly crushing my trachea. I started to notice when I checked my blind spots while driving, my ability to breath was greatly reduced. I've had these goiters for over 5 years now and I've been taking 30mg a day of methimazole. But they have seriously growth this year to the point where I went back to see an Endo and then referred to an ENT for surgery. My Endo Doctor says it's the biggest goiters he has ever seen. The CAT scan shows the trachea at my thyroid is now only 8mm _(should be around 25mm)_ in diameter - so its been reduced in size by two-thirds. My breathing ability has been greatly reduced and sometimes is very uncomfortable. I have to be careful eating. My ENT had to special order an intubation tube to fit down my narrowed throat. So my surgery is a high-risk surgery and they might only be able to do a partial Thyroidectomy, depending on the extent of the damage done to my trachea. If its too crushed and soft, they will need to let the trachea heel and firm up or it would collapse. Then have a 2nd surgery to do the other side in 6 weeks. ENT says I will be in the ICU overnight and a day or two in a normal hospital room after I get out of ICU. I've been reading all the threads for the last month trying to learn as much as possible on what I'm about to go through with TT surgery.


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## melissafitz

My goodness! I wish you all the best with your surgery, and hope you will be breathing freely again soon!


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## joplin1975

Wow...wishing you all the best. Is a shame they let it get to that point!


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## Kenwood

My new Endo doctor was also curious why my old Endo doctor didn't do anything but do a ultrasound and biopsy to make sure it wasn't cancerous. I guess it was a good thing I had to find a new Endo due to them no longer taking my health insurance.

Due to my PPO Health Insurance, this surgery is going to cost me $5,000+


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## Greg

I have my TT this coming Friday as well! Good luck!!


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## Velcro

Best of luck and I'm glad they are finally doing something for you.


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## Andros

Kenwood said:


> Well, this Friday, Sept 6th is my Total Thyroidectomy. I'm excited as well as very nervous. I have a massive goiter on BOTH sides of my thyroid that has been slowly crushing my trachea. I started to notice when I checked my blind spots while driving, my ability to breath was greatly reduced. I've had these goiters for over 5 years now and I've been taking 30mg a day of methimazole. But they have seriously growth this year to the point where I went back to see an Endo and then referred to an ENT for surgery. My Endo Doctor says it's the biggest goiters he has ever seen. The CAT scan shows the trachea at my thyroid is now only 8mm _(should be around 25mm)_ in diameter - so its been reduced in size by two-thirds. My breathing ability has been greatly reduced and sometimes is very uncomfortable. I have to be careful eating. My ENT had to special order an intubation tube to fit down my narrowed throat. So my surgery is a high-risk surgery and they might only be able to do a partial Thyroidectomy, depending on the extent of the damage done to my trachea. If its too crushed and soft, they will need to let the trachea heel and firm up or it would collapse. Then have a 2nd surgery to do the other side in 6 weeks. ENT says I will be in the ICU overnight and a day or two in a normal hospital room after I get out of ICU. I've been reading all the threads for the last month trying to learn as much as possible on what I'm about to go through with TT surgery.


How scary not being able to breathe!! I did not have the surgery so I am not a good candidate for comment but..............

I do want you to know that I will keep you in my thoughts and prayers.

Others will be along who have had TT to share their experience and give some "tips!"


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## Lovlkn

WOW! I've not heard many stories like yours. I also cannot believe your old endo let things get so out of control.

My suggestion is to keep ice on your incision - you will be sore and the ice will help with swelling.

How experienced is your surgeon? Do they do 4-5 thyroid removal's a week?


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## sheliaflor

I hope everything goes well with your surgery Kenwood. And yours too Greg. You both will be in my thoughts and prayers.


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## Kenwood

I'm fully confident in him. Yeah, my ENT surgeon does lots of Thyroid surgeries a week. Rated top ENT surgeon in Phoenix Magazine (a couple years ago) for top doctors (in each speciality). My Thyroid doctor sends family members to him...thats a very strong recommendation. On Friday...I'm his 2nd one scheduled.

BTW - Good luck to Greg too.


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## jade

Good luck to you and hope all goes well


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## Tamellen

I just had a TT. Don't be worried its not as bad as I thought it was going to be. The worst part is sleeping upright and removing the drain! You are doing the right thing. I had a similar issue. Doc said mine was the worst he's done, wrapping around my windpipe and voice box. I'm glad I did it! Good luck!


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## Kenwood

Fourth day post Total Thyroidectomy.

*Surgery - Friday, Sept 6th (10:30am)*- My surgery went very well and it was best-case scenario as the damage to my trachea was not as bad as expected and my surgeon was able to do BOTH sides with no need for a tracheostomy. According to the 9-page "Operation Report" my surgeon provided me. My surgeon said he loves a challenge and I provided him with one - as mine lasted almost 6 hours. I was given endotracheal anesthesia. Due to my trachea compression they had to use a smaller intubation tube. The right goiter was 8cm and left goiter was 7cm-8cm and they were firm. The left goiter was growing below my upper chest plate-which I kind of guessed. I vaguely remembering waking up in the recovery room ask asked my surgeon if he did both sides - he said YES he removed both sides&#8230;and I told him "I love you". LOL! Next thing I remember was I woke in the ICU room and it was 5:30pm. I immediately noticed I could breath easier and the pressure off my trachea was gone. I had an "auto-blood draw" line in my left hand and the IV line in right hand. Plus a drain tube in my neck. I also had a catheter too. My throat was sore from the intubation tube but I could whisper talk. I wasn't in much discomfort except for all the crap connected to me. My calcium levels were still very low. I was able to text family members and watch some TV. Surgeon checked in on me, spoke with my wife for a while, before leaving the hospital for the night. Had a "liquid dinner" and the warm broth felt good on my throat more so than the Italian ice thing. My back was sore from being in the hospital bed (I need to crack my back a lot during the day, so I was unable to do this). It got to the point where I rang the nurse and asked what I could do to sit up. I asked if I could sit on the edge of bed, so my legs could hang over. The nurse said they could bring in a recliner chair and they moved me and all my lines into this recliner chair and OMG that made the difference for me in comfort - as I was sitting in a chair versus being in that bed. I wasn't tired and asked for a sleeping pill and fell asleep around 2am in the recliner. Some of the nurses even mentioned that my surgeon is very picky on the care of his patients.

*Saturday, Sept 7th* - The day was mostly uneventful - Just constant checking on my calcium levels. But towards the evening, I started have problems and had to ring the nurse. My right hand with the IV started to hurt around the line. They had just finished a magnesium bag in my IV. But it wasn't the tingly feeling that we are all supposed to be aware of so much. Once my calcium levels crossed into the acceptable (but still on the low end of the scale) they removed the "auto-blood draw" line in my left hand - and that made me happy to get that sucker off. They then moved me to a private room from the ICU. Later my hand started to hurt more. This is where everyone was stumped a bit as my calcium levels were okay, but my right hands was now starting to hurt. It felt more muscle pain that started to slowly go up to my bicep muscle too. They immediately drew new blood labs, but my calcium levels were stable from the previous pull from two hours earlier. This was really my first pain from this surgery and I was not on any pain meds yet. Had some soft foods for dinner. I asked for a sleeping pill and a low-level pain pill so I could sleep that night. I was still in the recliner and I was able to use my CPAP to sleep.

*Sunday, Sept 8th* - I woke up around 4am in a lot of discomfort and rang the nurse to help the recliner go into the chair position. I told them both my forearms where throbbing and my hands were cold. Time for more blood work. My surgeon was notified when my calcium checked out okay. The on staff doctor checked me out and everything was still okay with my calcium levels. Since I was eating and drinking normal, they disconnected the IV line, so I had that hand free again. They also took out that damn catheter so I could now walk around and use the bathroom normally. In the afternoon, the doctor checked me out again and my calcium levels were good so they started the discharge process. They left the drain tube in and I would get that removed on Monday at my surgeon's office. I was out of the hospital around 1pm and glad to be home. My forearms were still sore and my wife massaging them with her thumbs helped. I slept on the couch.

*Monday, Sept 9th* - My forearm pain was better when I woke up. Went to my surgeon's office and had the drain tube removed. We discussed my arm pain, but it could just be from the lines in my hands. I think it was a combo of the lines in my arms and the way I was sitting in the recliner and not calcium related. He put the laryngoscopy down my nose and looked at vocal cords. Everyone the doctor's office seemed to say my neck staples/scar looked good and that I need to start turning my neck and not my body. It's that mental thing I have to get over. I'll come back on Thursday and have my staples out.

*Tuesday, Sept 10th* - My hands feel much better today and I think I'm over that problem and it will continue to get better. Noticed that my voice was much stronger today.


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## Kenwood

Here's my scar photo from Monday:








&


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## melissafitz

Oh, thank you for letting us know how you are doing. It sounds like it went really well, considering the special difficulty of your situation. I am so glad that they were able to get it all, and that you are home and recovering well. And it is wonderful that are breathing better. I hope you just continue to feel better and better!


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## jade

I'm glad to hear you're home and doing so well already. Sounds like you got a great surgeon! Thanks for updating us.


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## Lovlkn

Kenwood said:


> Here's my scar photo from Monday:


Is this the back of your neck?

Your story is simply amazing - I know you have to be glad you only need to go through this once.


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## Kenwood

Kenwood said:


> Here's my scar photo from Monday:





Lovlkn said:


> Is this the back of your neck?
> 
> Your story is simply amazing - I know you have to be glad you only need to go through this once.


LOL....no, that's the FRONT of my neck - I just have a long goatee. LOL _(The wifey tried bribing my surgeon to shave it off when I was unconscious)_

I'm very glad to only have to go through this once, as it's gonna cost me about $5k-$8k due the deductibles and my 20% plus whatever my crappy insurance tries to screw me on.

Also felt nice to take a partial shower (not get neck wet) and get that hospital stank gone. I had a couple coughing fits that seems to be more mental and just scares me. My voice is very tired tonight. I'm not sure if the two are related. I'm gonna try sleeping in my bed tonight.


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## joplin1975

I agree...fascinating story. I'm glad you are doing so well.

Lots of us have coughing issues after surgery. I think being a lot of it is tied to surgery...with a little mental goofiness thrown in too.  Make sure you keep taking those deep breaths.

I have to imagine the shower felt heavenly!


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## melissafitz

Hi, just wanted to share a couple tips about coughing that I found helpful immediately after surgery. One, was to use a "silent cough" in which you just force air up through your airway (like saying "ha" or "huh" very forcefully), but without slamming your vocal folds together the way you would with a regular cough. You can follow the silent cough with a dry swallow (swallowing your saliva). It is a kinder, gentler way of clearing the airways. 

http://www.dukehealth.org/services/voice_care_center/care_guides/voice_hygiene/throat_clearing

Also, I found that for the first 2-3 days that my swallow was sometimes a little uncoordinated and things would occasionally go down the wrong way or I would have a sensation of needing to clear my throat immediately after swallowing. Tucking my chin while swallowing helped a lot.


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## Andros

Kenwood said:


> Fourth day post Total Thyroidectomy.
> 
> *Surgery - Friday, Sept 6th (10:30am)*- My surgery went very well and it was best-case scenario as the damage to my trachea was not as bad as expected and my surgeon was able to do BOTH sides with no need for a tracheostomy. According to the 9-page "Operation Report" my surgeon provided me. My surgeon said he loves a challenge and I provided him with one - as mine lasted almost 6 hours. I was given endotracheal anesthesia. Due to my trachea compression they had to use a smaller intubation tube. The right goiter was 8cm and left goiter was 7cm-8cm and they were firm. The left goiter was growing below my upper chest plate-which I kind of guessed. I vaguely remembering waking up in the recovery room ask asked my surgeon if he did both sides - he said YES he removed both sides&#8230;and I told him "I love you". LOL! Next thing I remember was I woke in the ICU room and it was 5:30pm. I immediately noticed I could breath easier and the pressure off my trachea was gone. I had an "auto-blood draw" line in my left hand and the IV line in right hand. Plus a drain tube in my neck. I also had a catheter too. My throat was sore from the intubation tube but I could whisper talk. I wasn't in much discomfort except for all the crap connected to me. My calcium levels were still very low. I was able to text family members and watch some TV. Surgeon checked in on me, spoke with my wife for a while, before leaving the hospital for the night. Had a "liquid dinner" and the warm broth felt good on my throat more so than the Italian ice thing. My back was sore from being in the hospital bed (I need to crack my back a lot during the day, so I was unable to do this). It got to the point where I rang the nurse and asked what I could do to sit up. I asked if I could sit on the edge of bed, so my legs could hang over. The nurse said they could bring in a recliner chair and they moved me and all my lines into this recliner chair and OMG that made the difference for me in comfort - as I was sitting in a chair versus being in that bed. I wasn't tired and asked for a sleeping pill and fell asleep around 2am in the recliner. Some of the nurses even mentioned that my surgeon is very picky on the care of his patients.
> 
> *Saturday, Sept 7th* - The day was mostly uneventful - Just constant checking on my calcium levels. But towards the evening, I started have problems and had to ring the nurse. My right hand with the IV started to hurt around the line. They had just finished a magnesium bag in my IV. But it wasn't the tingly feeling that we are all supposed to be aware of so much. Once my calcium levels crossed into the acceptable (but still on the low end of the scale) they removed the "auto-blood draw" line in my left hand - and that made me happy to get that sucker off. They then moved me to a private room from the ICU. Later my hand started to hurt more. This is where everyone was stumped a bit as my calcium levels were okay, but my right hands was now starting to hurt. It felt more muscle pain that started to slowly go up to my bicep muscle too. They immediately drew new blood labs, but my calcium levels were stable from the previous pull from two hours earlier. This was really my first pain from this surgery and I was not on any pain meds yet. Had some soft foods for dinner. I asked for a sleeping pill and a low-level pain pill so I could sleep that night. I was still in the recliner and I was able to use my CPAP to sleep.
> 
> *Sunday, Sept 8th* - I woke up around 4am in a lot of discomfort and rang the nurse to help the recliner go into the chair position. I told them both my forearms where throbbing and my hands were cold. Time for more blood work. My surgeon was notified when my calcium checked out okay. The on staff doctor checked me out and everything was still okay with my calcium levels. Since I was eating and drinking normal, they disconnected the IV line, so I had that hand free again. They also took out that damn catheter so I could now walk around and use the bathroom normally. In the afternoon, the doctor checked me out again and my calcium levels were good so they started the discharge process. They left the drain tube in and I would get that removed on Monday at my surgeon's office. I was out of the hospital around 1pm and glad to be home. My forearms were still sore and my wife massaging them with her thumbs helped. I slept on the couch.
> 
> *Monday, Sept 9th* - My forearm pain was better when I woke up. Went to my surgeon's office and had the drain tube removed. We discussed my arm pain, but it could just be from the lines in my hands. I think it was a combo of the lines in my arms and the way I was sitting in the recliner and not calcium related. He put the laryngoscopy down my nose and looked at vocal cords. Everyone the doctor's office seemed to say my neck staples/scar looked good and that I need to start turning my neck and not my body. It's that mental thing I have to get over. I'll come back on Thursday and have my staples out.
> 
> *Tuesday, Sept 10th* - My hands feel much better today and I think I'm over that problem and it will continue to get better. Noticed that my voice was much stronger today.


Well; aren't you the writer? What a lovely and concise accounting of your personal experience and we love the outcome!!!! You had some very serious surgery there; you are a trooper to the max!

Thank you so much for sharing your experience. I am confident this will help many of our posters.


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## Lovlkn

My mother had several surgeries and they gave her this breathing tube thing to clear the lungs of anesthesia.. She would breath in deep and breath out deeper to get a float to hit a line. I wonder if the length of your surgery and the amount of anesthesia is causing the cough.

Maybe a few deep inhales and exhales every hour for a day or so would help.

LOL about the facial hair - I could not understand why they would have gone in from the back of your neck LOL


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## Kenwood

Lovlkn said:


> My mother had several surgeries and they gave her this breathing tube thing to clear the lungs of anesthesia.. She would breath in deep and breath out deeper to get a float to hit a line. I wonder if the length of your surgery and the amount of anesthesia is causing the cough.


They gave me that...it's a Voldyne spirometer/exerciser

http://datatrack.net/f_info.htm


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## Velcro

I thought they had gone through the back as well until you explained! Glad to hear you are recovering nicely.


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## Kenwood

Just got the staples removed this morning. Then next week have my 1st post-TT blood labs drawn.


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## jenny v

Wow, I thought staples had to stay in for a pretty long time! That's great news, it probably feels so much better to have them out.


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## Lovlkn

Kenwood said:


> Just got the staples removed this morning. Then next week have my 1st post-TT blood labs drawn.


Be sure and insist they run Free T-4 and Free T-3 every lab.


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## Kenwood

One week post-TT (Friday), my voice sounded stronger and I was able to talk with my siblings and boss on the phone. Going back to work on Monday, but I'm not going leave my office phone on "Out of Office" with a message that I cannot talk on the phone due to my surgery and that I will need to communicate via email that week. Later in the evening, I went to the movies (but didn't do any popcorn). Driving wasn't too bad, turning my neck - but backing up was a lot harder to do. The seatbelt was a little uncomfortable as it went across the end of my incision. I'll need to adjust that tomorrow. By the end of the day, my voice was back to the Dark Knight's Batman.

Overall, I'm feeling great. It is soo amazing to be able to breathe like a normal person again. My neck feels okay, just "tight" across my incision line. I now have about a dozen "butterfly" pieces of tape across my scar. Running out of stuff to watch I've saved up on my TiVo. I think I've scanned over every thread on this Surgery forum three times already looking up various advise on Post TT. Thanks everyone for the guidance!


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## jenny v

It's amazing how fast the body can heal, isn't it? I'm having a TT in October, although my surgery won't be nearly as complicated as yours was. I'm glad to hear you can drive already and feel good enough to go back to work so soon. I'm planning on taking a week off and then either working from home a few days or going back to the office for a few half days. Guess it depends on how good I feel and how bored I am at home, lol!


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## joplin1975

Sounds like your are doing well!

The tightness is something I had for a bit, but it does go away.

I'm sure it'll feel good to get back to work...or, well, at least a semi-normal routine.


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## Kenwood

My Meds:

Calcitriol - 0.5 mcg twice a day
Levothyroxin 150 mcg once a day
Magnesium Oxide 400 mg twice a day
Tums 1500 mg 4 times a day


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## Kenwood

*Three weeks post TT (Sept 6th)*

I must say things are much better than I really expected. Overall, I feel total normal - just have this massive ass scar. Using Mederma (with SPF) on it daily now. I still have that monotone, no inflection, raspy voice. I'm still trying to limit the amount of talking I do each day - especially at work. As if I talk too much at work, my voice starts to stain. I'm fine if its up close, soft talking, but when I try to project - that _"75 yr old 3-packs a day smoker" _voice appears. I know everyone (Dr's and here) says it take 1-3 months for your vocal chords/nerves to heal. I'm trying to be patience, but its tough when I catch myself trying to sing along with a song on the radio - no octaves. Last week, my surgeon took off the butterfly tape strips - its so nice to have a free neck. All the bruises on my upper chest / neck line and arms (IV & auto-blood draw) are almost gone - faint yellow.

My first blood labs (9/18) don't look too promising for my parathyroids (have either 1 or 3 parathyroids):

TSH - 27.79 (HIGH)
T4 Free - 0.8
T3 Free - 2.1
Calcium - 8.8
Intact PTH - <6 (normal range is 15-65)

Funny how when you have surgery - every doctor wants to see you. My Endo wants another blood draw on Oct 7th - and then he might adjust my meds. My Primary Doctor thinks I am recovering remarkably. She reviewed the surgeons report and said I lost a LOT of blood during the surgery - 400ML which is almost a pint of blood. One side was super bloody - so when they got it out - the nurses put it in this "fluid" - so they could not inspect it afterwards for the parathyroids. Other side had one parathyroid attached.

The Pathology report came back fine. Right Thyroid lobe was 94 grams - 8.5 x 5.0 x 4.5 cm. Left Thyroid lobe was 95 grams - 9.0 x 5.0 x 4.5 cm (one parathyroid gland identified).


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## joplin1975

This all sounds good except for the "he might adjust my meds" part. Take it from me, who didn't demand meds adjustment and ended up with a TSH of 121, if your TSH is 27 *NOW*, it's only going to get worse. So I say bump up those meds ASAP.


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## Octavia

joplin1975 said:


> This all sounds good except for the "he might adjust my meds" part. Take it from me, who didn't not demand meds adjustment and ended up with a TSH of 121, if your TSH is 27 *NOW*, it's only going to get worse. So I say bump up those meds ASAP.


DITTO DITTO DITTO!!!! No "might" about it - your meds need to be adjusted.


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## Kenwood

Octavia said:


> DITTO DITTO DITTO!!!! No "might" about it - your meds need to be adjusted.


Bad choice of words - Meant to say, he would adjust my meds after the next blood lab as he wanted a full month from the surgery to see before the adjustments. My ENT surgeon ordered the previous blood labs. My next Endo appt is Oct 10th. So thats when my meds will get adjusted


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## Octavia

That's great!


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## Kenwood

Here's how my scar is healing (below beard) - _Click on pix link: _


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## Kenwood

Need some advice on my voice or maybe just a pep-talk:

I'm 4 weeks post TT, but my voice is just NOT where I was hoping it would be. I can talk and sound normal at a low volume voice (ie on phone or face-to-face). But if I have to talk normal or project my voice (i.e. in a restaurant) my voice strains. I still do not have any range, inflection, or octaves. Straight low monotone voice. Wifey and daughter say I sound better...but I'm just NOT hearing it. Sucks not to be able to sing with music. I'm just so frustrated with how little my voice has improved. I still have some discomfort in my throat. And my voice will get tired if I talk too where I stain to be heard. I miss hearing ME.


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## jenny v

I wouldn't be too discouraged just yet; of the three people I know who have had TT's, it took 6 weeks or more for their voices to be totally normal. One of my friends said it took 3 months before she felt her voice was back 100%. And think of how huge your goiters were, your vocal chords probably got really banged up with the amount of maneuvering it took to get everything out.


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## KeepOnGoing

You're right, it's "pep-talk" time!

My voice was not right for about 3 months. Like you, everyone else thought it was much better but it didn't sound right to me. I found, if I had to talk too much, I ended up with a strange, fuzzy headache.

Thankfully (I'm a teacher!) it sorted itself out with time. I know how difficult it is to have patience, but there doesn't seem to be any other cure... Just be reassured that it will, with time, improve.


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## Kenwood

jenny v said:


> I wouldn't be too discouraged just yet; of the three people I know who have had TT's, it took 6 weeks or more for their voices to be totally normal. One of my friends said it took 3 months before she felt her voice was back 100%. And think of how huge your goiters were, your vocal chords probably got really banged up with the amount of maneuvering it took to get everything out.


Thanks! From reading this board...8cm goiters on both sides are massive compared to what others had. It's just so nice to be able to breathe normal and fill my lungs fully.


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## Kenwood

Kenwood said:


> My first blood labs (9/18):
> 
> TSH - 27.79 (HIGH)
> T4 Free - 0.8
> T3 Free - 2.1
> Calcium - 8.8
> Intact PTH - <6 (normal range is 15-65)


This blood lab printout looked way different than any of the others as my Endo wrote the script for this one:

Here's my second blood labs (10/7):

TSH - 29.81 (range 0.45 - 4.50)
T3 Uptake - 31.3 (range 23.4 - 42.7)
T3 Total - 75 (range 80 - 200)
T4 Free - 0.9 (range 0.8 - 1.7)
T4 (Thyroxine) - 4.6 (range 4.5 - 12.5)
T7 Index - 1.4 (range 1.2 - 4.3)

All my levels are still on the very low side, so my *Levothyroxine (Synthroid) was upped from 150 mcg to 175 mcg*. He forgot to run the PTH test to see if I have any parathyroid activity. What was nice was he gave me a free samples for a 6-week supply to get to my next appt with him. I do another blood lab in a month. I have a Dr appt with ENT/Surgeon next week. So I'm gonna make sure he does the scope thingy to look at my vocal cords.

Overall I feel pretty good. Still frustrated with my voice. Last night was out with friends and I just could not "be heard" while trying to talk in a group setting with others talking. The only thing I'm curious about - is that my legs go "to sleep" when I cross them (guy style) within a minute of doing that (either leg). Endo Dr says thats probably from my low levels.


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## joplin1975

I didn't have any voice issues, do I can't comment...but I did want to say that when my labs were that far off, my body did funky things. So, I kinda agree with your surgeon...get those numbers in a better place and then reassess.


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## Kenwood

Today, I'm a mixed bag of emotions. My brother is in the hospital having the same exact Thyroid surgery that I had just two months ago. Thankfully, his thyroid goiters are only half the size mine were.

Here is what my brain is going crazy over - If my family did not decide to make a surprise trip to PHX for my birthday in August...my brother might have never realized that he had a thyroid goiter too. When he was in town, I showed him and made him feel my neck and what the goiters felt like. The next week, my brother noticed that he had a bulge in his neck too when he tilted his head up to shave. He went to the doctor and sure enough he had Thyroid goiters. And that due to my extreme thyroid condition (crushing my windpipe), the doctors were gonna just remove the thyroid even though his levels were normal. So his doctor fast tracked the surgical process.

My brother is now out of surgery and the doctors removed his entire thyroid. But the also cancer during the surgery too and the doctors think they got all of the cancer.

It's just so surreal - that if my family didn't decide to surprise me and Chelsea for our birthday - it might have been a quite a while before my brother realized he had a serious health problem inside his body. I'm thankful for this.


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## Lovlkn

> my Levothyroxine (Synthroid) was upped from 150 mcg to 175 mcg.


Make sure you are taking your Synthroid with a full glass of water and away from any calcium or iron containing foods or supplements - 4 hours both sides of Synthroid.

In my opinion your doctor is running too many tests - a Free T-4 and Free T-3 are what you need to figure out your replacement dose.


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## Kenwood

Lovlkn said:


> Make sure you are taking your Synthroid with a full glass of water and away from any calcium or iron containing foods or supplements - 4 hours both sides of Synthroid.
> 
> In my opinion your doctor is running too many tests - a Free T-4 and Free T-3 are what you need to figure out your replacement dose.


I'm not doing that? I take my Synthroid when I wake up. Then a couple hours later at work (usually 2 hours), I take my Calcitriol and Tums. The weekends, I take em much closer as I sleep in on weekends.

As to the tests, that last blood labs result looked weird as my Endo wrote that up (My ENT has done the others) - so I just listed everything. My ENT just writes it on a script pad, while the Endo uses this big form with all these boxes and checks off the thyroid ones. I really do not care for this Endo Dr but I LOVE my ENT Dr. So I might eventually just stay with my ENT Dr and drop my Endo. I'm still seeing both after every blood lab.

BTW - My toenails have become brittle now.


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## jenny v

You really need to try and take your calcium at least 4 hours after your Synthroid. Calcium and iron (and other supplements) can interfere with your body fully and properly absorbing the Synthroid so it can't do its job. I take my Synthroid in the morning and my calcium and vitamins in the evening so everything is totally spaced out.


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## Kenwood

I have to take 1500mgs of Tums FOUR times a day. My Meds:

Calcitriol - 0.5 mcg twice a day (Breakfast & Dinner)
Levothyroxin 175 mcg once a day (First time upon Wake up)
Magnesium Oxide 400 mg twice a day (Breakfast & Bedtime)
Tums 1500 mg 4 times a day (Breakfast, Lunch, Dinner, Bedtime)


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## jenny v

Oy, that's going to be tricky. Are you going to have to take all of the calcium four times a day permanently or is this just a temporary thing? Could you set an alarm for early in the morning and keep your thyroid meds by the bed? That way you could just roll over, pop the pill and go back to sleep.


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## Kenwood

'Kenwood' said:


> My first blood labs (9/18):
> 
> TSH - 27.79 (HIGH)
> T4 Free - 0.8
> T3 Free - 2.1
> Calcium - 8.8
> Intact PTH - <6 (normal range is 15-65)





Kenwood said:


> This blood lab printout looked way different than any of the others as my Endo wrote the script for this one:
> 
> Here's my second blood labs (10/7):
> 
> TSH - 29.81 (range 0.45 - 4.50)
> T3 Uptake - 31.3 (range 23.4 - 42.7)
> T3 Total - 75 (range 80 - 200)
> T4 Free - 0.9 (range 0.8 - 1.7)
> T4 (Thyroxine) - 4.6 (range 4.5 - 12.5)
> T7 Index - 1.4 (range 1.2 - 4.3)
> 
> All my levels are still on the very low side, so my *Levothyroxine (Synthroid) was upped from 150 mcg to 175 mcg*. He forgot to run the PTH test to see if I have any parathyroid activity. What was nice was he gave me a free samples for a 6-week supply to get to my next appt with him. I do another blood lab in a month. I have a Dr appt with ENT/Surgeon next week. So I'm gonna make sure he does the scope thingy to look at my vocal cords.
> 
> Overall I feel pretty good. Still frustrated with my voice. Last night was out with friends and I just could not "be heard" while trying to talk in a group setting with others talking. The only thing I'm curious about - is that my legs go "to sleep" when I cross them (guy style) within a minute of doing that (either leg). Endo Dr says thats probably from my low levels.


Three months post TT.

Still NO IMPROVEMENT in my voice! So frustrated!!

My ENT did the enoscope and it showed: mild notching of the posterior True Vocal Cords with Erythema; significant tightening of larynx with phonation. Thinks I have muscle tension dysphonia as well as irritation of the TVC's from the intubation. Started me on Omeprazole to help heal that. But I'm also still super Hypo and my TSH is RISING. But my stupid Endo only raised my *Levothyroxine (Synthroid) from 175 mcg to 200 mcg*. My Primary Doctor wants it raised MUCH higher. Endo did add more Calcitrol (0.5mcg).....so now I take it 3x a day (instead of 2x). The stupid Endo also canceled my scheduled Umbilical Hernia Surgery, when my Primary Care Dr and ENT Dr all had no problems with it. I go next week to see if my levels improve enough to get his authorization.

Here's my third blood labs (11/18):

TSH - 32.50 (range 0.45 - 4.50) *<---- WHAT This is getting HIGHER*

 T3 Uptake - 36.3 (range 23.4 - 42.7) 

T3 Total - 75 (range 80 - 200) 

T4 Free - 1.0 (range 0.8 - 1.7)

 T4 (Thyroxine) - 5.3 (range 4.5 - 12.5) 

T7 Index - 1.9 (range 1.2 - 4.3)

Calcium (ionized) - 4.48 (range 4.52 - 5.28)

  Parathyroids

PTH Intact 6 (range 15-65)

PTH Calcium - 8.4 (range 8.7 - 10.5)


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## joplin1975

Kenwood, you are clearly a candidate for either the addition of cytomel or switching to dessicated meds. I can't believe your TOTAL t3 is that low!!!


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## Kenwood

Kenwood said:


> Three months post TT.
> 
> Still NO IMPROVEMENT in my voice! So frustrated!!
> 
> My ENT did the enoscope and it showed: mild notching of the posterior True Vocal Cords with Erythema; significant tightening of larynx with phonation. Thinks I have muscle tension dysphonia as well as irritation of the TVC's from the intubation. Started me on Omeprazole to help heal that. But I'm also still super Hypo and my TSH is RISING. But my stupid Endo only raised my *Levothyroxine (Synthroid) from 175 mcg to 200 mcg*. My Primary Doctor wants it raised MUCH higher. Endo did add more Calcitrol (0.5mcg).....so now I take it 3x a day (instead of 2x). The stupid Endo also canceled my scheduled Umbilical Hernia Surgery, when my Primary Care Dr and ENT Dr all had no problems with it. I go next week to see if my levels improve enough to get his authorization.
> 
> Here's my third blood labs (11/18):
> 
> TSH - 32.50 (range 0.45 - 4.50) *<---- WHAT This is getting HIGHER*
> 
> T3 Uptake - 36.3 (range 23.4 - 42.7)
> 
> T3 Total - 75 (range 80 - 200)
> 
> T4 Free - 1.0 (range 0.8 - 1.7)
> 
> T4 (Thyroxine) - 5.3 (range 4.5 - 12.5)
> 
> T7 Index - 1.9 (range 1.2 - 4.3)
> 
> Calcium (ionized) - 4.48 (range 4.52 - 5.28)
> 
> Parathyroids
> 
> PTH Intact <6 (range 15-65)
> 
> PTH Calcium - 8.4 (range 8.7 - 10.5)


Well...looks like last months increase in Synthroid (175 to 200) and Calcitrol (2x to 3x day) has paid off as by TSH levels dropped from 32.50 to 17.15. The is the first decrease ever (as it was rising every month). My Endo *increased again my Synthroid from 200 to 250*. The doctor never runs T3 Free, so this time I just added it on the blood test request. Guess my parathyroids are dead 

*4th blood labs (12/10):*

TSH - 17.15 (range 0.45 - 4.50) *<---- much better (drop by almost half)*

 T3 Uptake - 32.7 (range 23.4 - 42.7) 

T3 Total - 91 (range 80 - 200) 

T3 Free - 2.4 (range 2.0 - 4.8)

T4 Free - 1.1 (range 0.8 - 1.7)

 T4 (Thyroxine) - 6.1 (range 4.5 - 12.5) 

T7 Index - 2.0 (range 1.2 - 4.3)

Calcium (ionized) - 4.79 (range 4.52 - 5.28)

  Parathyroids

PTH Intact "DNR" <6 (range 15-65)

PTH Calcium - 9.0 (range 8.7 - 10.5)


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## Andros

Kenwood said:


> Three months post TT.
> 
> Still NO IMPROVEMENT in my voice! So frustrated!!
> 
> My ENT did the enoscope and it showed: mild notching of the posterior True Vocal Cords with Erythema; significant tightening of larynx with phonation. Thinks I have muscle tension dysphonia as well as irritation of the TVC's from the intubation. Started me on Omeprazole to help heal that. But I'm also still super Hypo and my TSH is RISING. But my stupid Endo only raised my *Levothyroxine (Synthroid) from 175 mcg to 200 mcg*. My Primary Doctor wants it raised MUCH higher. Endo did add more Calcitrol (0.5mcg).....so now I take it 3x a day (instead of 2x). The stupid Endo also canceled my scheduled Umbilical Hernia Surgery, when my Primary Care Dr and ENT Dr all had no problems with it. I go next week to see if my levels improve enough to get his authorization.
> 
> Here's my third blood labs (11/18):
> 
> TSH - 32.50 (range 0.45 - 4.50) *<---- WHAT This is getting HIGHER*
> 
> T3 Uptake - 36.3 (range 23.4 - 42.7)
> 
> T3 Total - 75 (range 80 - 200)
> 
> T4 Free - 1.0 (range 0.8 - 1.7)
> 
> T4 (Thyroxine) - 5.3 (range 4.5 - 12.5)
> 
> T7 Index - 1.9 (range 1.2 - 4.3)
> 
> Calcium (ionized) - 4.48 (range 4.52 - 5.28)
> 
> Parathyroids
> 
> PTH Intact 6 (range 15-65)
> 
> PTH Calcium - 8.4 (range 8.7 - 10.5)





Kenwood said:


> Well...looks like last months increase in Synthroid (175 to 200) and Calcitrol (2x to 3x day) has paid off as by TSH levels dropped from 32.50 to 17.15. The is the first decrease ever (as it was rising every month). My Endo *increased again my Synthroid from 200 to 250*. The doctor never runs T3 Free, so this time I just added it on the blood test request. Guess my parathyroids are dead
> 
> *4th blood labs (12/10):*
> 
> TSH - 17.15 (range 0.45 - 4.50) *<---- much better (drop by almost half)*
> 
> T3 Uptake - 32.7 (range 23.4 - 42.7)
> 
> T3 Total - 91 (range 80 - 200)
> 
> T3 Free - 2.4 (range 2.0 - 4.8)
> 
> T4 Free - 1.1 (range 0.8 - 1.7)
> 
> T4 (Thyroxine) - 6.1 (range 4.5 - 12.5)
> 
> T7 Index - 2.0 (range 1.2 - 4.3)
> 
> Calcium (ionized) - 4.79 (range 4.52 - 5.28)
> 
> Parathyroids
> 
> PTH Intact "DNR" <6 (range 15-65)
> 
> PTH Calcium - 9.0 (range 8.7 - 10.5)


OMG!! What is wrong w/your doctors? You are in dire need of exogenous T3; either Cytomel or Dessicated Thyroid. To continue to raise your Synthroid is unconscionable and can do you a great disservice.

Please read the links below and have a talk w/your doctors about this.

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Armour thyroid
http://www.armourthyroid.com/

Cytomel
http://labeling.pfizer.com/ShowLabeling.aspx?id=703

By now; you should be clicking your heels in the air! Anyway, we all wish that for you!


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## Kenwood

I'm seeing my ENT doctor next Thursday. So I'm going to gather a list of questions to ask him....*please feel free to add some input*. But I will discuss my T3 levels and Cytomel. So based upon those articles.....my body is not converting T4 to T3 well....but adding some Cytomel will help.


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## jenny v

Correct, you would probably benefit from Cytomel (T3) in addition to your Synthroid (T4). While your current Free T4 could stand to be higher, your Free T3 is really in the basement and Cytomel would probably help that.


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## Swimmer

KEN -- before you agree to surgical mesh - please study it thoroughly - -including autoimmune -- just so that you are ready to make a deciscion if you want synthetic surgical mesh used for your hernia repair... There are lawsuits from the recalled stuff, and concerns about the new stuff... If it is somehow required maybe you can look into non-synthetic? (I don't know)


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## Kenwood

Swimmer said:


> KEN -- before you agree to surgical mesh - please study it thoroughly - -including autoimmune -- just so that you are ready to make a deciscion if you want synthetic surgical mesh used for your hernia repair... There are lawsuits from the recalled stuff, and concerns about the new stuff... If it is somehow required maybe you can look into non-synthetic? (I don't know)


My Endo wouldn't approve me having the umbilical hernia surgery later this month, so now I won't be having the surgery. Since I had met my insurance deductible with my Thyroid surgery, can't afford such an elective surgery in 2014 - as it's not bothering me (I now have a big outtie belly button instead of an innie). In a way....I'm kinda relieved as I really didn't want to go through another surgery and recovery.


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## Kenwood

Kenwood said:


> Well...looks like last months increase in Synthroid (175 to 200) and Calcitrol (2x to 3x day) has paid off as by TSH levels dropped from 32.50 to 17.15. The is the first decrease ever (as it was rising every month). My Endo *increased again my Synthroid from 200 to 250*. The doctor never runs T3 Free, so this time I just added it on the blood test request. Guess my parathyroids are dead
> 
> *4th blood labs (12/10):*
> 
> TSH - 17.15 (range 0.45 - 4.50) *<---- much better (drop by almost half)*
> 
> T3 Uptake - 32.7 (range 23.4 - 42.7)
> 
> T3 Total - 91 (range 80 - 200)
> 
> T3 Free - 2.4 (range 2.0 - 4.8)
> 
> T4 Free - 1.1 (range 0.8 - 1.7)
> 
> T4 (Thyroxine) - 6.1 (range 4.5 - 12.5)
> 
> T7 Index - 2.0 (range 1.2 - 4.3)
> 
> Calcium (ionized) - 4.79 (range 4.52 - 5.28)
> 
> Parathyroids
> 
> PTH Intact "DNR" <6 (range 15-65)
> 
> PTH Calcium - 9.0 (range 8.7 - 10.5)


4 months since TT. My numbers are slowly improving while my TSH continues to drop. My Endo *increased my **Synthroid from 250mcg to 300mcg*. My voice still has NOT improved. 

*5th blood labs (1/14/2014):*

TSH - 10.25 (range 0.45 - 4.50) *<---- dropping more*

 T3 Uptake - 3o.4 (range 23.4 - 42.7) 

T3 Total - 100 (range 80 - 200) 

T3 Free - 2.7 (range 2.0 - 4.8)

T4 Free - 1.2 (range 0.8 - 1.7)

 T4 (Thyroxine) - 6.6 (range 4.5 - 12.5)

T7 Index - 2.0 (range 1.2 - 4.3)


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## joplin1975

I'm still gonna say you need some t3. How are you feeling?


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## Kenwood

joplin1975 said:


> I'm still gonna say you need some t3. How are you feeling?


I have talked to all three of my doctors (PCP, ENT, Endo) and none of them seemed too concerned about my T3 or trying Cytomel. It's one of the few things they are all in agreement on. My PCP and ENT will be glad I've been bumped up to 300mcg Synthroid as they both felt that's wear I should have been taking months ago due to my heavy weight and crazy TSH levels. Overall, I feel good. - it's just my voice that still sucks I think my internal body thermostat is still off - as I've always been hot - now I'm more cold at times.


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## Lovlkn

300mcg is a HUGE dose. I would have to imagine you are having alot of interaction from the calcium you are taking.

I also take alot of calcium - 500mg 3 x a day and have begun taking my Unithroid and Cytomel in the middle of the night 4 hours either side of calcium.

Do you take your calcium with food and what do your doctors have to say about taking more than 500mg of calcium per dose? I understand that your body cannot absorb more than 500mg at any one time.


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## Kenwood

Lovlkn said:


> 300mcg is a HUGE dose. I would have to imagine you are having alot of interaction from the calcium you are taking.
> 
> I also take alot of calcium - 500mg 3 x a day and have begun taking my Unithroid and Cytomel in the middle of the night 4 hours either side of calcium.
> 
> Do you take your calcium with food and what do your doctors have to say about taking more than 500mg of calcium per dose? I understand that your body cannot absorb more than 500mg at any one time.


FYI - I'm a very large guy over 325+ pounds.

I take *1,500mg of Calcium 4x's a day* (every meal and at bedtime). I consider coffee my breakfast (don't normally eat in the morning until lunch.

My Endo doctor says my parathyroids are dead as they do not register on my blood labs. The only mention my other doctors have on this subject: My ENT has mentioned at some point in the next quarter, he would like to reduce the Calcium to see if it would/might "wake up" my parathyroids (he hasn't given up hope yet).

The only interactions I can possibly think of is on occasion, my leg(s) will get a little light tingly like when I crossed my legs or put my feet up (like on the desk). Never used to happen so quickly. What sort of interactions do people have?


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## Kenwood

jenny v said:


> Correct, you would probably benefit from Cytomel (T3) in addition to your Synthroid (T4). While your current Free T4 could stand to be higher, your Free T3 is really in the basement and Cytomel would probably help that.


During each of my visits with my doctors (PCP, ENT, Endo) in December, I discussed the topic of my Free T3 levels and possible adding Cytomel and all of my doctors did not want to go that route after reviewing my December labs with them.


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## Airmid

Well someone who is taking more Synthroid then me. Though I still have a piece of my thyroid and it's not something to be all that proud of. I'm at 250 mcgs with my T3/T4 still in the basement. You aren't alone here. hugs1

Has anyone every given you a reason as to why your PTH is so low? Did you find out if they were damaged during surgery and that is why your calcium is having issues? It sounds like you were okay for at least a while after surgery and then they crashed, perhaps this is why your ENT is so hopeful. You are taking so much calcium, is there a possibility of suppressing your parathyroids as under normal circumstances they'll start to turn off when high levels of calcium are in the blood.

Thyroid hormone isn't absorbed as well when taken with calcium or iron supplements. The rule of thumb is four hours on either side which means you'll have to wake up middle of the night for thyroid. I take mine at 5 AM though I'm usually up anyways to avoid problems with the rest of my meds, especially when I'm on an iron supplement. You may not sense the interactions but you wont get the full action of thyroid medication which in turn means it's harder to treat. Though looking at your labs you still need T3 regardless.


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## Kenwood

Airmid said:


> Well someone who is taking more Synthroid then me. Though I still have a piece of my thyroid and it's not something to be all that proud of. I'm at 250 mcgs with my T3/T4 still in the basement. You aren't alone here. hugs1
> 
> Has anyone every given you a reason as to why your PTH is so low? Did you find out if they were damaged during surgery and that is why your calcium is having issues? It sounds like you were okay for at least a while after surgery and then they crashed, perhaps this is why your ENT is so hopeful. You are taking so much calcium, is there a possibility of suppressing your parathyroids as under normal circumstances they'll start to turn off when high levels of calcium are in the blood.
> 
> Thyroid hormone isn't absorbed as well when taken with calcium or iron supplements. The rule of thumb is four hours on either side which means you'll have to wake up middle of the night for thyroid. I take mine at 5 AM though I'm usually up anyways to avoid problems with the rest of my meds, especially when I'm on an iron supplement. You may not sense the interactions but you wont get the full action of thyroid medication which in turn means it's harder to treat. Though looking at your labs you still need T3 regardless.


The doctors were only able to confirm that I have at least *ONE parathyroid*.

My TT surgery was 6+ hours long. I lost a LOT of blood during the surgery - 400ML which is almost a pint of blood. One side was super bloody - so when they got it out - the nurses put it in this "fluid" - which made it impossible to so inspect it afterwards for the parathyroids on that side. Other side had one parathyroid attached. The Pathology report came back fine. Right Thyroid lobe was 94 grams - 8.5 x 5.0 x 4.5 cm. Left Thyroid lobe was 95 grams - 9.0 x 5.0 x 4.5 cm (one parathyroid gland identified).


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## Airmid

There are some tests to see if that sucker is still alive in there. Plus the biopsy should have picked up on all parathyroids attached, so only one is a good thing. While people can have anywhere between 2-6, the vast majority of people have four. They are usually located in behind your thyroid but can be found anywhere between the neck just under the chin to the upper chest. They are naturally the size of a grain of rice so they aren't all that easy to see. When I had surgery for my parathyroid tumor (that ended up finding cancer and the loss of most of most of thyroid), my tumor was the size of grape and considered big for this sort of thing if that gives you an idea how small they are. Mine was almost 4 hours long due to extensive complications. I'm surprised they opened you up so much, as even with everything and the mess of my thyroid and the complications of where the parathyroid tumor was I still only have a two inch incision.


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## Kenwood

Airmid said:


> There are some tests to see if that sucker is still alive in there.


Yeah, I've had three of those PTH tests so far...every test shows "DNR" (Does Not Resister) Intact PTH - <6 (normal range is 15-65)


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## Airmid

Kenwood said:


> Yeah, I've had three of those PTH tests so far...every test shows "DNR" (Does Not Resister) Intact PTH - <6 (normal range is 15-65)


There are a couple of other tests but they're very long that may show if the parathyroid is at least functional. It really depends on what the ENT wants to do but you're on so much calcium right now to get it to normal that even if they had started functioning again (after surgery it's often not surprising that they crash which is why they monitor the calcium so closely) they would be turned off since you have normal to excessive at times (like right after a calcium intake) levels of calcium in the blood.

I have the exact opposite problem as you, despite excess calcium my PTH is high normal to high because they are over active.

I guess I should have also asked this during my other post but I didn't even think of it at the time as it is a situation that rather unique to parathyroids - was the reason they didn't take out the parathyroid gland they accidentally removed and transplant it somewhere because they didn't see it at the time?


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## Kenwood

Kenwood said:


> 4 months since TT. My numbers are slowly improving while my TSH continues to drop. My Endo *increased my **Synthroid from 250mcg to 300mcg*. My voice still has NOT improved.
> 
> *5th blood labs (1/14/2014):*
> 
> TSH - 10.25 (range 0.45 - 4.50) *<---- dropping more*
> 
> T3 Uptake - 3o.4 (range 23.4 - 42.7)
> 
> T3 Total - 100 (range 80 - 200)
> 
> T3 Free - 2.7 (range 2.0 - 4.8)
> 
> T4 Free - 1.2 (range 0.8 - 1.7)
> 
> T4 (Thyroxine) - 6.6 (range 4.5 - 12.5)
> 
> T7 Index - 2.0 (range 1.2 - 4.3)


My levels have stabilized with my *Synthroid at 300mcg*. I don't have to see my Endo for 6 months. I have another followup with my ENT next week. But my voice has NOT improved in months. Still cannot sing or yell. No pitch or octave.

*6th blood labs (2/24/2014):*

TSH - 1.24

T3 Free - 2.7

T4 Free - 1.5


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## joplin1975

Gosh...your t3 still looks miserably low. I know your doctors don't want to add t3, but, but, but...


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## jenny v

I agree with joplin, your FT3 levels look really low. How do you feel physically (apart from the voice issues)?


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## Kenwood

jenny v said:


> I agree with joplin, your FT3 levels look really low. How do you feel physically (apart from the voice issues)?


I feel really good....and have for several months. No issues what so ever....except for my voice


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## jenny v

Well, that's good news! The last time you went to your ENT did they scope your throat to look at your vocal cords?


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## Kenwood

jenny v said:


> Well, that's good news! The last time you went to your ENT did they scope your throat to look at your vocal cords?


I was last scoped on Dec 4th - and it showed: mild notching of the posterior True Vocal Cords with Erythema; significant tightening of larynx with phonation. Thinks I have muscle tension dysphonia as well as irritation of the TVC's from the intubation. Started me on Omeprazole to help heal that.

My next ENT appt is this Wednesday


----------

