# TT Scheduled



## megan (Jul 11, 2013)

I'm a first-time poster, but I've been reading posts here for a while. I had a baby 17 months ago, and when I went to the doctor about 6 months after my baby was born, he noticed that my thyroid was enlarged. He told me that it is very common to develop thyroid problems after having a baby, but he sent me for an ultrasound to get it checked out.
The ultrasound showed a 5 cm nodule on the left side of my thyroid, so I was sent for a FNA. The results from that showed it to be a benign follicular nodule. Since it was benign and not causing me any trouble with breathing or swallowing, we decided to wait 6 months and reevaluate it (even thought it was large).
In the meantime, I saw an endocrinologist, who did a lot of blood work, and I went back for another ultrasound this summer. My thyroid levels all looked ok, but my nodule had grown to 6 cm. A second FNA last month came back as a follicular lesion of undetermined significance. My endocrinologist recommended surgery, and I saw my surgeon a couple weeks ago. He recommended a total thyroidectomy, in order to avoid a second surgery if it turns out to be cancer. My TT is scheduled for August 6.
I appreciate the way you all have shared your experiences and advice here. I am a little nervous about the surgery, but am encouraged that most of you have said that it isn't too terrible. My biggest concern is what will come after - the RIA, if needed, and getting my medication levels right. I have a 6 year-old and a 17 month-old, and I am concerned about caring for them through the whole process.
Have any of you been diagnosed with a "follicular lesion of undetermined significance?" Did it turn out to be cancer?


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## joplin1975 (Jul 21, 2011)

Hi Megan,

My best advice is to not borrow trouble. If you do need RAI and/or have trouble getting your meds right, these are frustrating, but managable issues. No sense worrying about them until you get there.

Do you know what your doctor's plans are for replacement medication post op?


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## Mac409 (Jul 22, 2013)

Hi Megan my surgery is schedule for 8/7. I am also having a total I am worried also about what is to come. Will I always be tired. Will I gain tons of weight. But I have to believe I will be okay. And you have to believe that too. I'm afraid of the unknown but I'm more afraid of it being cancer and not having done anything. I'm depending a lot on this site for info. So far it's been encouraging. I'm Mary Ann , btw. Good luck to you. Not good yet at using this site, but I'll try to find you again. You go one day before me.


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## megan (Jul 11, 2013)

Thank you for the reassurances. I know that everything will be fine; it's just getting through it all that I am dreading a bit. 
Joplin, I'm not sure what the plan is for post op replacement meds. My endocrinologist recommended a PT, so there was a possibility of avoiding meds altogether. My surgeon recommended a TT, and from what I had researched and what I had read on this site, I agree that a TT is the right choice for me. I need to update my endocrinologist's office and see what the procedure will be about follow-ups and replacement meds.
Mary Ann, I have the same concerns and questions. This site has been very encouraging and helpful to me as well, and it gives me hope to read about people who are doing really well post TT. I will be praying for you as we go through this!


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## KeepOnGoing (Jan 2, 2013)

To answer your initial question - yes, I had a follicular lesion of undetermined significance, and yes, in my case, it turned out to be cancer (but that, in itself, is unusual, you should remember!). I had a PT and then completion surgery and wish, in retrospect, I'd had TT to start with. So I had the surgery twice - and it still wasn't half as bad as you would expect! I didn't have RAI because it wasn't needed.

9 months on, I am fine! Yes, it's a pain getting the meds right - but it's manageable. Yes, there have been days when getting out of bed has seemed like a real challenge, but I've still been working all this time, walking the dog, riding, getting on with life etc etc. I haven't put any unexplained weight on and actually feel better now than I did before the operation. Don't worry too much about what might happen - it probably won't, and if it does, you'll deal with it then.


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## Andros (Aug 26, 2009)

megan said:


> I'm a first-time poster, but I've been reading posts here for a while. I had a baby 17 months ago, and when I went to the doctor about 6 months after my baby was born, he noticed that my thyroid was enlarged. He told me that it is very common to develop thyroid problems after having a baby, but he sent me for an ultrasound to get it checked out.
> The ultrasound showed a 5 cm nodule on the left side of my thyroid, so I was sent for a FNA. The results from that showed it to be a benign follicular nodule. Since it was benign and not causing me any trouble with breathing or swallowing, we decided to wait 6 months and reevaluate it (even thought it was large).
> In the meantime, I saw an endocrinologist, who did a lot of blood work, and I went back for another ultrasound this summer. My thyroid levels all looked ok, but my nodule had grown to 6 cm. A second FNA last month came back as a follicular lesion of undetermined significance. My endocrinologist recommended surgery, and I saw my surgeon a couple weeks ago. He recommended a total thyroidectomy, in order to avoid a second surgery if it turns out to be cancer. My TT is scheduled for August 6.
> I appreciate the way you all have shared your experiences and advice here. I am a little nervous about the surgery, but am encouraged that most of you have said that it isn't too terrible. My biggest concern is what will come after - the RIA, if needed, and getting my medication levels right. I have a 6 year-old and a 17 month-old, and I am concerned about caring for them through the whole process.
> Have any of you been diagnosed with a "follicular lesion of undetermined significance?" Did it turn out to be cancer?




I am sorry you have to go through this but when FNA comes back indeterminate, it is a good idea to go ahead with the thyroidectomy.

There are many here who have been through what you are going through so I am positive they will be along to offer experiences, outcome, challenges and the whole 9 yards.


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## Octavia (Aug 1, 2011)

megan said:


> Have any of you been diagnosed with a "follicular lesion of undetermined significance?" Did it turn out to be cancer?


Hello. Yes, this was my situation. I was not as smart as you...I opted for the PT at my surgeon's recommendation. It turned out to be the wrong decision...but it seemed like the right thing to do at the time. Uncertainties are hard sometimes.

If your surgeon starts you out on a decent dose of Synthroid (or equivalent) after your surgery, you shouldn't have too much trouble adjusting. My surgeon started me on 125 mcg, and today I take 137, so he wasn't too far off the mark!


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## Mac409 (Jul 22, 2013)

I woke up this morning and I am really in a panic mentally. My surgery is just 10 days away. I know after reading thru all the posts that a total is the right choice. I Do not want to have to go back for a second surgery. 
How soon after the surgery do they start you on the medication ? Also, it may sound silly, but what about moving your neck around. Do you have to keep it mostly straight and still?


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## Octavia (Aug 1, 2011)

My surgeon started me on meds the day after surgery. Generally, Graves patients need to wait a bit for their levels to decrease (if they were hyper).

I could move my neck. I drove a couple of days after surgery. But I was certainly glad my friend changed the date of our ski trip so we could ski BEFORE my surgery instead of AFTER...no way I could have gone skiing comfortably for several weeks (skiing is hard on the neck though, so don't let that scare you).


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## Ptbrwn (Feb 3, 2013)

I had my TT on 1/21/13 which was performed in a same day surgery center. My Meds started on 1/24 and I had no neck discomfort at all.


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## joplin1975 (Jul 21, 2011)

I had to have RAI so I was not started on meds until a few weeks after my surgery.

I have a herniated disk in my neck, so I was pretty stiff and sore, but I could move around easily enough. I started driving about a week and a half after surgery.


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## gelf (Jun 20, 2011)

I had my tt on Friday and a right mastectomy. I drove this morning.


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## Octavia (Aug 1, 2011)

gelf - great to hear from you! Please let us know how you're doing. (Perhaps in another thread...)

:hugs:


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## DustingMyselfOff (May 17, 2013)

I had my TT on July 16th and started Levothyroxine 5 days later. I had very little problems moving my neck..... I was driving and turning my head full range 2 days after surgery. I'm not sure if I were supposed to be turning it that much but I was certainly able to.

Good luck!
Sue


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## KarenB (Jul 19, 2013)

I am one of the 'lucky' ones who opted for a PT only to find out I ultimately needed a TT as my nodule was malignant. I have come through the second surgery pretty well though, and ultimately I don't feel like my progress has had a huge setback. I do wish I had opted initially to take the whole thing, but it's a very personal decision.



Mac409 said:


> I woke up this morning and I am really in a panic mentally. My surgery is just 10 days away. I know after reading thru all the posts that a total is the right choice. I Do not want to have to go back for a second surgery.
> How soon after the surgery do they start you on the medication ? Also, it may sound silly, but what about moving your neck around. Do you have to keep it mostly straight and still?


I really understand your anxiety, but please don't panic! Ultimately I am sure everything will be okay for you :hugs:

I started my medication the day after my surgery - 100mcg of thyroxine. Since then I've been having some heart palpitations and muscle twitches, but I'm only 4 days out from my second surgery, and considering I feel otherwise okay, I'll take that! After the first surgery I had some problems moving my neck, but I had a lot of neck problems prior, so I expected that. Following the second surgery my neck has felt so much better - today I have almost normal movement and I can get up and down from pillows etc with no pain. I have taken no pain killers at all in the last 24 hours!

Take heart from the stories on this forum - a lot of people have had the same anxiety you're experiencing and are doing great. Best of luck.


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## angel711baby66 (May 7, 2013)

Here is my story (short version) I went in for gall bladder surgery this March and when they went to insert the breathing tube they had trouble due to a nodule (4 cm) I had no idea I even had. My thyroid was working fine and I never knew or felt they large nodule. After an ultrasound the surgeon found I had four with one of them being very large. It was explained to me that the nodule was to big to biopsy and that it would be considered invalid and so she suggested removing the entire thyroid vs. partial just because I did have two on the other side and if those were to grow she would have to go back and take it all out anyway. So I think the right move it the total Thyroidecomy. The surgery was in April and and was placed on 112 of synthroid the next morning. The actual area isnt painful but its horrible to eat. I couldnt even pick crumbs off a slice of bread and swallow. Even liquids hurt for 2 days. The neck area isnt painful but boy its stiff. I didnt sleep a wink at all in the hospital but once I got home I was able to get comfortable. I think im a slow healer becaues it took a while for my neck to stop being so stiff. I work out daily and I really wanted to get back on track and I wasnt able to as fast as I would have liked. At my post op exam the surgeon said my neck was still very swollen and that I wasnt healing as fast as most patients. I had difficultly swallowing for about 8 weeks and the docs were also concered with that but now that is gone (thank God) and I can swallow just fine now. However, I still get a sick neck very often...I think its my own fault because I'm so guarded about it that I tense up all the time. I find that when I read my book in bed at night I have to stop every now and then and pick my head up. This is really no big deal but just an FYI. 
As for the meds. I was on 112 synthroid but after 6 weeks I was very tired and my muscles started to hurt everyday! At first I didnt think anything of it because I do work out alot but I then realized what I felt wasnt normal. My doc took labs and my TSH levels came back within her range 4.8 but I know this is high. After telling her my symptoms she started me on 125 of synthroid. The muscle aches have stopped but Im still tired. The brain fog is very annoying because Im a perfectionist esp. at work and that hasnt been the case since surgery. Its manageable but annoying. Tomorrow I go see a new endo and so I hope things go well. Im not really sure if I need an increase in meds but maybe it will help with being so tired all the time. As for weight gain...this was a big concern for me. However, so far I havent gained any weight. Since the surgery I have craved carbs every moment of the day...which I heard happens with a TT not sure how true that is. But I work out all the time and so I have maintained the same weight from before the surgery. Best of luck to you and maybe buy one of those traveling pillows for the hospital stay. I think that was the worst part of it all and if I could have went home the same day...I would have!


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## Mac409 (Jul 22, 2013)

Thanx Pt and Oct. that makes me feel a little better. I feel completely in the blind here. I never had a problem before. All my blood work always comes back great expect for my vitamin d... If it wasn't that I broke my nose and had to see an ENT I would never had known this. So for the past 3 mths I have been wondering what if I didn't break my nose, I never would have known. But everyone says to me things happen for a reason.


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