# New here, just had TT



## nodakmom

Hi, my name is Lori and I just had a TT 2 days ago. The right side had benign nodules and the left side had an indeterminate cyst that we are awaiting pathology results. I assumed I would be sent home with hormone replacement, and when I asked before I was discharged the nurse told me they would do that at my follow up appt--which isn't until Nov 4th! That seems like a long time to be waiting. I do not have an endo, just the surgeon and family dr. Should I be calling in right away and ask about that again? Otherwise I figured I'd ask when they call with the path results on Tuesday. Any advice would be appreciated, I'm feeling kind of lost at the moment.


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## Octavia

Lori, welcome to the forum, an it sounds like you must be doing pretty well!

If your pathology report comes back clean (no cancer), then there's no reason you shouldn't be starting your replacement hormones.

If cancer is/was present, they may hold off on the hormones in preparation for Radioactive Iodine (RAI) treatment. You have to go hypo prior to the RAI.

BTW - don't let them start you too low. I was started at 150 micrograms/day, and that's where I am still...it seems to be right for me (for TSH suppression, post-cancer). But it seems like some doctors start people off at only 25 or 50 mcg after a total thyroidectomy, and they're hypo for some time before getting the level right (and it ends up being significantly higher).


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## joplin1975

Octavia said:


> If cancer is/was present, they may hold off on the hormones in preparation for Radioactive Iodine (RAI) treatment. You have to go hypo prior to the RAI.


Yup, this is why I didn't start hormones. RAI, if needed, will usually take place 3-6 weeks after the TT.


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## Andros

nodakmom said:


> Hi, my name is Lori and I just had a TT 2 days ago. The right side had benign nodules and the left side had an indeterminate cyst that we are awaiting pathology results. I assumed I would be sent home with hormone replacement, and when I asked before I was discharged the nurse told me they would do that at my follow up appt--which isn't until Nov 4th! That seems like a long time to be waiting. I do not have an endo, just the surgeon and family dr. Should I be calling in right away and ask about that again? Otherwise I figured I'd ask when they call with the path results on Tuesday. Any advice would be appreciated, I'm feeling kind of lost at the moment.


Welcome to the forum! Octavia and Joplin have given you correct information. I do hope that the cyst comes back benign.

If you are good to go and all is benign, then it would be prudent to get the following tests.

TSH (thyroid stimulating hormone), FREE T3 and FREE T4. These tests will tell if you have gone hypo and provide a very good baseline for future reference.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=3

How are you feeling and how is your incision site doing?


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## SnoodMama

I was given 125 microgram Levothroid to start taking about 3 days after the TT. But they were fairly certain mine was benign. Talk again to the doctor when you get your pathology results back. I'm not sure but I think it takes maybe 10 or 14 days after the surgery to become hypo. Is that correct? I'm not sure (not even sure where I got that number into my head). So don't depend on that number. There's no need for you to start to feel poorly just because of waiting for an appointment. My surgeon prescribed a 30 day supply. But I couldn't get an endocrinologist appointment for 45 days, so I just had the surgeon refill it to cover the 15 days. Definitely call and ask again if they aren't going to tell you the path results until Nov 4. Are they going to call you? Or do you have to wait for the results as well?


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## webster2

Hi & Welcome! Could the nurse have meant a post op follow up in a week? It would be a great idea to phone them and let them know you aren't seeing an endo until 11/4. Perhaps they are waiting on the pathology results too? It is never a bad idea to phone, if you need clarification! Hope you are recovering well & resting often!


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## joplin1975

It really depends on the person on how long it takes to get hypo & also each doctor will probably have a different hypo "threshold." So, #1 priority is getting those path results...the go from there.


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## nodakmom

The dr. said the path results should be available by Tuesday, I believe they will call me then so I will definately ask. If I don't hear anything I will call on Wednesday. My follow up appt isn't with the endo, just the dr's PA for the surgery.

Andros- the incision site looks good, no drainage. Still sore enough to need pain meds so just taking it easy in the lazyboy today 

Thanks everyone!!


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## Octavia

webster2 said:


> Could the nurse have meant a post op follow up in a week?


That's a good point. I had follow-ups with my surgeon (ENT) at 3 days, 7 days, and 14 days post-op. You should have a follow-up sooner than 3 weeks.


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## nodakmom

Octavia said:


> That's a good point. I had follow-ups with my surgeon (ENT) at 3 days, 7 days, and 14 days post-op. You should have a follow-up sooner than 3 weeks.


That surprised me too. That's the only appt they have set for me tho :confused0033: See why I feel confused? lol


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## webster2

Yes, phone your surgeon's office. You should be seen sometime during the first week or so after surgery. I am not sure how most doctor's handle the pathology report but that was one thing we went over during my post op appointment. Best wishes...


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## I DClaire

Octavia said:


> Lori, welcome to the forum, an it sounds like you must be doing pretty well!
> 
> If your pathology report comes back clean (no cancer), then there's no reason you shouldn't be starting your replacement hormones.
> 
> If cancer is/was present, they may hold off on the hormones in preparation for Radioactive Iodine (RAI) treatment. You have to go hypo prior to the RAI.
> 
> BTW - don't let them start you too low. I was started at 150 micrograms/day, and that's where I am still...it seems to be right for me (for TSH suppression, post-cancer). But it seems like some doctors start people off at only 25 or 50 mcg after a total thyroidectomy, and they're hypo for some time before getting the level right (and it ends up being significantly higher).


I was started at 125 mg and I'm convinced it's too low. They told me initial Synthroid dosing is loosely based on a person's weight but my next door neighbor weighs at least 50 lbs. less than I do and she takes 190 mg Synthroid. A 55-year old man at church this morning told me he takes 50 mg and that his thyroid stopped working??? I dunno' about that one!

My surgeon must have been sure he got my little cancer when he said no follow-up treatment was being recommended and I started Synthroid the day after surgery - at 5:00 A.M.


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## SweetGirl44

nodakmom said:


> Still sore enough to need pain meds so just taking it easy in the lazyboy today


Welcome to the group. (Sorry for the reason you are here) Ahhhh the lazyboy the best non-prescription medication there is for thyroid ills! lol My surgeon left me on 30 mg of Armour (dessicated pig thyroid) I wasn't scheduled to see my endo until 3 weeks after my TT surgery. Thankfully I had met with her a month before my surgery (new doctor) and we had discussed medications then. She thought the surgeon would have given my a script for Synthroid or Levoxl before I left the hospital. Turns out he left that up to the endo, so I called her office six days after my surgery, the day after I got my clean path report. Her receptionist took my info and put me on hold, pulled my chart, informed my doctor and low and behold 3 hours later my husband picked up my 100 mg of Levoxyl and 5 mg Cytomel (2 x's a day) medications. I think this doctor might be a keeper after taking such good care of her new patient. Hope you get what you need and are feeling better with every passing day!


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## nodakmom

Thanks everyone. After leaving 2 messages this week I finally got a call from my Dr. himself this afternoon. Turns out the pathologist isn't sure what's going on with my thyroid and has sent it off for further testing. There are abnormal cells but he's not comfortable saying if they are benign or cancerous. Leave it to me to be odd lol. Hopefully we'll get a report back in a week. Meanwhile his nurse will call me tomorrow to get me set up on Synthroid right away. I'll update when I know more, but thank you all for your help and support!


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## nodakmom

The P.A. called me back today to discuss medication. She said she'd send an Rx in for Synthroid, but it's my decision if I want to pick it up. The report from Mayo won't come back for another week or so, if it _is_ cancer and I haven't started the Synthroid they can refer me to the Endo and get RAI started right away, vs waiting another 6 weeks. I'd rather just get it done right away if needed so I'll hold off starting Synthroid for now. It's back to work on Monday, should be interesting lol.


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## Andros

nodakmom said:


> The P.A. called me back today to discuss medication. She said she'd send an Rx in for Synthroid, but it's my decision if I want to pick it up. The report from Mayo won't come back for another week or so, if it _is_ cancer and I haven't started the Synthroid they can refer me to the Endo and get RAI started right away, vs waiting another 6 weeks. I'd rather just get it done right away if needed so I'll hold off starting Synthroid for now. It's back to work on Monday, should be interesting lol.


I could not agree more w/your decision making process and if you go really hypo, they can Rx some Cytomel (T3) so you can wing it. You would just stop taking the Cytomel about 1 week prior to your RAI.

Hate this for you but better to be safe than sorry.


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## Catnap

I'm new too, had my TT and central neck dissection 2 days ago. Mine is almost definitely cancer, but we don't know if it's papillary or medullary - signs are pointing to papillary and I'm really really hoping it's that one.
How are you feeling?? My anaesthetist warned me I'd feel tired and down, but I actually feel exhausted but not sleepy and i'm jittery! And my calves feel sore/heavy. They checked my calcium before I left hospital and it's fine so i'm not sure if what i'm experiencing is normal. I left hospital after less than 24 hours now I'm wondering if it's too soon? Luckily I only have pain when I swallow and haven't needed painkillers yet.
My surgeon has put me on 115mg (??) of thyroxine. If it's pap I will probably need radiation therapy but the surgeon says there is an injection I can have rather than go hypo. I'm pleased as I've already put on 1kg and I'm sure the old thyroid hormones have not left my body! I'll be the size of a house if I have to go proper hypo


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## nodakmom

Catnap- Oh, I know that feeling! Exhausted but not sleepy and yet jittery. My calves specifically don't feel sore but my legs sometimes feel like they weigh a ton. I can't believe it but I haven't gained anything yet.

Did they take lymph nodes from you since you had a dissection? I was looking that up, seems like a scary thing to go through.


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## Catnap

Nodakmom - bizarrely for me I did no research on the neck dissection. I knew it was important in case I have medullary cancer. I don't know yet how extensive it was, how many lymph nodes removed etc but my surgeon has a lot of experience with this so I felt I was in good hands. So far it doesn't sound like I'm faring any worse than if just had thyroidectomy.


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## Andros

nodakmom said:


> Hi, my name is Lori and I just had a TT 2 days ago. The right side had benign nodules and the left side had an indeterminate cyst that we are awaiting pathology results. I assumed I would be sent home with hormone replacement, and when I asked before I was discharged the nurse told me they would do that at my follow up appt--which isn't until Nov 4th! That seems like a long time to be waiting. I do not have an endo, just the surgeon and family dr. Should I be calling in right away and ask about that again? Otherwise I figured I'd ask when they call with the path results on Tuesday. Any advice would be appreciated, I'm feeling kind of lost at the moment.


How are you feeling since your surgery, Lori? Have you received the pathology report yet?

What does the incision look like; healing up well for you?

Hope to get an update from you soon!


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## nodakmom

Thank you for asking Andros  I am doing fairly well considering. Still no path report unfortunately, so I'm still not on Synthroid. I will call on Monday and ask again, hoping that they have something back for sure by my Nov. 4 checkup.

Here's what my incision looks like today, 16 days post-op now:

__
https://flic.kr/p/aA2Ngr


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## nodakmom

The PA called this morning, finally got the results back from Mayo. It was papillary cancer, unsure what kind as I didn't ask on the phone but I have my surgery follow up appt on Friday so I will ask all the details then. I'm going to move over to posting on the RAI board (but I'll still reply to posts here, gotta support ya'll!) At least I finally have an answer and a good reason to feel hypo crummy lol.


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## joplin1975

Glad you got an answer...on to the RAI!


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## webster2

Glad you have an answer too. It is nice to know, even if it is not what we want to hear. Best wishes!


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## Andros

nodakmom said:


> Thank you for asking Andros  I am doing fairly well considering. Still no path report unfortunately, so I'm still not on Synthroid. I will call on Monday and ask again, hoping that they have something back for sure by my Nov. 4 checkup.
> 
> Here's what my incision looks like today, 16 days post-op now:
> 
> __
> https://flic.kr/p/aA2Ngr


Oh, my gosh........................lookin' good, Girl Friend!!! Awesome!~! How does it feel?


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## nodakmom

Andros said:


> Oh, my gosh........................lookin' good, Girl Friend!!! Awesome!~! How does it feel?


The very ends are just a tad tender is all. I've been putting maderma on it, I had people tell me they swear it helped their scars.


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## honey_mocha

Your scar looks good nodakmom. Best wishes to you!


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## Octavia

Your scar looks GREAT!!! Sorry to hear it's cancer, but sure glad it's out! 

I hope the Mederma works well for you. I did not have good luck with it, but I started it months after my surgery, so by then, the damage was done, so to speak. Plus, my skin reacted negatively to it...got all red and blotchy. I'm trying something else now and having better luck.

Please do keep us posted!


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## webster2

Wow, another fabulous looking scar!


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## Catnap

nodakmom said:


> The PA called this morning, finally got the results back from Mayo. It was papillary cancer, unsure what kind as I didn't ask on the phone but I have my surgery follow up appt on Friday so I will ask all the details then. I'm going to move over to posting on the RAI board (but I'll still reply to posts here, gotta support ya'll!) At least I finally have an answer and a good reason to feel hypo crummy lol.


What size was your tumour? Are you definitely having RAI?? 
I got my final pathology last week and also have (had??) papillary cancer. For me that was fantastic news as medullary was mentioned on my biopsy report so to find out I just had a small papillary tumour after all was like being given my life back! The stats are so good for papillary we'll all be fine.
Good luck with RAI. I may have to go there myself but really hoping it'll be deemed unneccesary
:hugs:


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## nodakmom

Catnap said:


> What size was your tumour? Are you definitely having RAI??
> I got my final pathology last week and also have (had??) papillary cancer. For me that was fantastic news as medullary was mentioned on my biopsy report so to find out I just had a small papillary tumour after all was like being given my life back! The stats are so good for papillary we'll all be fine.
> Good luck with RAI. I may have to go there myself but really hoping it'll be deemed unneccesary
> :hugs:


My RIA is scheduled for Nov 9th at 3 pm, she said "Come alone", feel like a drug deal goin down lol. So yes, it's definate. IDK the size of the cancer itself, my right lobe was enlarged to 3+ cm. I have my surgical follow up on Friday morning so I will ask all the details then (kind, size, etc.).

Glad your's was not medullary, scary to think that one is harder to treat and can be hereditary. hugs3


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