Paging DebE --- questions re thyroid surgery

wmonique2 · Post by **wmonique2** » Sun Jan 18, 2015 8:33 pm

DebE--- did you have the whole thyroid removed or just half?

My results are inconclusive. The cells are abnormal but it is not clear that they are actually positively cancerous. My surgeon decided that he would remove half the thyroid where the particular nodule is located and while I am under he would biopsy it and some lymph nodes and then decide whether he would remove the rest of it.

Tell me what they did with you and how was your post surgery experience. Long time recovery? Short? I am clueless. Are you taking thyroid hormones?

Thanks Deb. appreciate your input..

Regards,

Monique

DebE13 · Post by **DebE13** » Wed Jan 21, 2015 7:55 pm

Hi Monique,

Sorry for the delay. Started a new job and I hurt from head to toe. Didn't realize how out of shape I am. My muscles are slowing coming back and I'm feeling it.

it's a good things though- I absolutely love it!

I would recommend joining the thyroid cancer support group at thyca.org. There are many stories there too. Inconclusive results are tough. I am by no means an expert or even close to it. I can just tell you my experience. We are in the same church but different pews.

are your nodules large? I had papillary cancer and there were two microcarcinomas that were totally encapsulated, no lymph node involvement. I did not have RAI and am getting yearly ultrasounds and bloodwork to monitor recurrance. I was told I am in the highest percentile as a low risk return. It still doesn't stop me from wondering.

My surgeon asked my preference. He said he would see what everything looked like during the surgery and decide then if he would do a partial lobectomy. To me it didn't make sense and I told him I wanted the whole thing removed. I could only imagine having another nodule develop down the road and having the expense, recovery, and BS that goes with it- twice. Plus, if you have a partial thyroid still producing hormones it could be harder to dose meds if sputters in and out of life. It's a very personal choice and every one is different. If you have a partial thyroidectomy and the pathology comes back with bad news you will have to have a second surgery within a short period of time.

I am taking levothyroxine made by Mylan. It was the only one that I could find without offensive ingredients. The same for the liothyronine- it's made by Paddock. Cytomel has gluten so this is another "safe" one. It's been a ridiculous frustration with the pharmacy. They have to special order both and it seems like they screw it up just about everytime. I don't get as mad as I used to but expect very little from them. They continue to try to switch or mix and match manufacturers insisting it doesn't make a difference. It does. Micrograms are very precise and the margin allowed between manufacturers to meet the dosing requirements can make a difference in the dose you are actually receiving. My endo explained it to me much better but the bottom line is if you switch the manufacturer of your thyroid meds you should also plan on doing bloodwork at some point to be sure the dose is where it should be.

I wish I could try some form of NDT but there are no doctors in my area that I can find. I won't try a naturopath because I'm sure I would have a hard time getting my endo to do my annual cancer follow up if he isn't the one issuing my meds. I also wonder if Tirosint would be a better option. I made an appt with my PCP in December to discuss my frustrations. She told me she knew a psychiatrist who wrote scripts for Armour. It sounded like it would be a bigger mess than anything. (And no, I'm not depressed!). I was granted a referral to UW Health in Madison. It's about two hours away and I have high hopes of getting some adjustment to my meds. I spoke with her nurse yesterday and was disapointed I can't get it until July but I am on the call back list for cancellations. The nurse said this endo treats with a patients symtoms in mind and all her patients love her. She looked at my labs and said it looked like there was room for adjustment. It was nice they didn't want to waste my time or money if there was nothing they would do different. Nothing is guaranteed but it is worth trying. Don't let my meds story scare you. Not eveyone has issues, I'm just one of the lucky ones.

It was an outpatient surgery and I was admitted for 23 hours.

The surgery went without complications and I was off work for ten days. Be sure your surgeon has experience- a lot of it. it is such a sensitive area. Mine was great and only works in the area from the sinus to the neck and does TTs 3-4x a week. One of the four parathyroids was severed during surgery but was implanted back in. I had no calcium issues.

They did not do the surgery justice. It was basically, we take out the thyroid, you stay for 23 hours, am off gor 10 days, take some pills, and are happy ever after. I think I would have handled it better if I was better informed. Although, I felt like I was at death's door before the surgery so maybe that had something to do with it. Turning your head will be difficult for a while but make a point of doing it to stretch out the area. Movement will be impaired for a couple weeks. Laying down and getting up from a reclined position was a bugger. I slept propped up for a while. I was most surprised at how everthing in my upper body hurt. I felt like I was hit by a bus. I think a nurse told me the soreness was due to the ventillator, which makes sense. Looking back at it, it wasn't fun, but is manageable. Swallowing will hurt for a while. Other people report it was a breeze so again, I think everyone is different. I was a little jealous since I have a high pain threshhold and consider myself a toughie when it comes to that sort of stuff. Maybe I was just worn from years of feeling like crap.

I had some big issues with brain fog and memory a few months after the TT but that was part of adjusting the meds. That,for me, was the worst part.

Some people are very concerned with the scar. To me, I could care less. It took a bit for it to stop looking red and angry but now you can barely see it. I found it a bit humorous because it reminded me of Frankenstein. It's been recent that touching the area doesn't creep me out. It's a sensitive area.

My biggest complaint now is neck tension and shoulder pain that I never had until after the TT. I' m not sure how it's related but it is, for me. There are others the complain of similar issues and others that have none. There can be vocal cord issues but I had none. For a few days after the surgery I could only muster up a whisper to the benefit of my family.

I don't regret having the surgery because I can function now. I was told I could wait up to a year to have the surgery done but cancer is cancer and I couldn't see waiting and giving it the opportunity to spread. I had it removed 23 days after the dx. I would have had it done it the next day but that was the soonest I could get in.

Sorry you got a dx where you don't know if the cancer is there or not. Have you decided what you want to do yet? I'd like to hear more.........

Lesley · Post by **Lesley** » Thu Jan 22, 2015 12:54 pm

I Have a friend in Israel who had it 45 years or so ago. Maybe more. She has lived HAPPILY with it for all these years. Every now and again they do some tests with radioactive material so she is isolated for a few days, but other than that she is fine long term. No problems, feels great. She is my only reference for it. But it's a good one.

DebE13 · Post by **DebE13** » Fri Jan 23, 2015 3:58 am

There are lots of positive stories out there. I think everyone experiences bumps in the road. Some more than others. I always keep in mind that the people posting on the support site are mostly those that are having some big issues so it isn't a fair assumption to think every TT is a horror story. People that have few issues tend to go on with their lives and not watch the posts. I know I stopped reading them for a while when I was first dx because it just added to my anxieties. It was good to know potential hurdles but at the same time, like we always say, everyone is different and many of the problems mentioned were non-issues for me.

Bottom line is, if you were dealt the TT card, there really is no choice but to move through it.

Have you been feeling bad lately or was this just something that was stumbled upon?

DebE13 · Post by **DebE13** » Fri Jan 23, 2015 5:44 pm

www.holtorfmed.com

This was a page on FB that was titled :

5 Thyroid Lies Your Endocrinologist May Try to Tell You
by Holtorf Medical Group

4. If You Have a Suspicious Nodule, We Need to Take Out Your Thyroid Gland”
Some thyroid patients have nodules — lumps in the gland. A suspicious nodule may be large in size, growing quickly, or have suspicious characteristics in imaging tests like a CT scan or ultrasound, or on a radioactive uptake test. Before recommending surgical removal, however, a nodule should typically undergo a fine needle aspiration (FNA) biopsy, to assess whether the nodule is cancerous. If it is cancerous, then the treatment typically does involve surgical removal. However, a substantial number of these FNA biopsies come back indeterminate or inconclusive.

If you have FNA testing on a suspicious nodule, and the result is that it is indeterminate or inconclusive, ask for a Veracyte Afirma Thyroid Analysis test, before agreeing to surgery. This test is performed on your FNA biopsy results, and can eliminate most inconclusive results, to determine quite accurately whether the nodule is cancerous. Since some inconclusive nodules are benign, this test can help you avoid surgery and a lifetime of hypothyroidism afterwards.

I am not familiar with any of the info but I thought of you when I saw it.

wmonique2 · Post by **wmonique2** » Thu Feb 05, 2015 7:38 pm

Hi Deb,

I am so sorry for waiting so long to answer. And thank you for taking the time to answer with so many details. I really appreciate your effort.

I was waiting to get a second opinion (and even a third one from a friend who is a doctor).

I was hoping the second surgeon would say to wait and follow up but that's not what he recommended. After analyzing all the ultrasounds, FNA, he concluded the same thing my own surgeon concluded.

Everyone said take it out. It's not worth taking a chance. It was abnormal but it showed follicular cancer with some strange aberrations. My own surgeon (whom I trust) was not in a hell of a hurry to remove my thyroid until he consulted with his own pathologist, not just the hospital's who wrote the report.

My surgeon has conducted some 5,000 of these. He comes highly recommended from other practices and even from other doctors from out of state. And he is at Emory, a very reliable clinic.

What he said was that he will take half out and biopsy some lymph nodes while I am under. Then he'll decide if the whole thing comes out of not. He thinks that half will be enough but that is not sure.

I read very carefully your response and I am hoping that I won't have a hard time. I hope that the scaring won't be horrible either.

I'll be referring to your reply after surgery and if and when I am put on natural thyroid hormone. Right now I can't digest the whole thing and I can't relate it.

Again thanks. Surgery is for the 24th.

Love,

Monique

ldubois7 · Post by **ldubois7** » Sat Feb 07, 2015 8:51 pm

Prayers for you Monique.
It sounds like you're in good hands!

DebE13 · Post by **DebE13** » Sun Feb 08, 2015 7:21 pm

Glad you have some better answers now and a surgeon you are comfortable with. I found the waiting to be the most bothersome part wondering what the surgery would unfold. Once the surgery is done you can focus on recovery and improvements.

Sue777 · Post by **Sue777** » Mon Feb 09, 2015 10:52 am

Hello. Just hopping back on here after a long absence (yes, you guessed it, having a flare-up) and saw this thread about thyroids. I might be able to offer a little personal insight since I had mine removed in July of 2013. I have Graves Disease and tried controlling it with meds for several years but got sick of chasing the sweet spot and changing meds and dosages all the time. Finally decided to have my thyroid removed, got referred to a surgeon, consulted with her, and she agreed wholeheartedly that I would benefit by getting rid of it.

The surgery was about 3 hours but didn't matter to me - I was out of it. My husband says I spoke to him in the recovery room but I don't remember any of that. First thing I remember was being wheeled into my hospital room. Even though they had given me anti-nausea meds with the anesthesia I still felt sick to my stomach and unfortunately vomited a few times. I was scared to death to vomit right after my neck had just been cut open but it didn't cause any damage, and within a few hours I felt great. Slept most of the night, woke up and had a big breakfast, and was released. I took 4 weeks off from work but really didn't need to . . . recovery was very easy. I never took a single pain pill. My scar is practically non-existent (I have to point it out to people) and I haven't regretted the surgery once.

As long as your surgeon does several of these a month then you'll be in good hands and things will turn out fine. Best of luck, and try to relax.
Sue

wmonique2 · Post by **wmonique2** » Mon Feb 09, 2015 10:59 am

Thank you so much Sue for your perspective!

I was a little concerned about pain, scar, how long I'll be out of it etc...you are making me feel better about the whole thing!

This last week I felt my anxiety levels getting stratospheric -- I have to wait till the 24th to get it done...but now I can relax and I will.

Thank you DebE for your last reply too.

Love you guys!

Monique

Grahm · Post by **Grahm** » Mon Feb 09, 2015 12:24 pm

Monique,

I haven't had this surgery but my Mother did and she did NOT have any problems. Prayers for you my friend.

Love,
Connie

DebE13 · Post by **DebE13** » Mon Feb 09, 2015 6:32 pm

I was told I didn't need to rush into the surgery and could wait up to a year to have it done. I believe I had many years of undx thyroid problems and felt like I was at death's door at the time so I would have had the surgery the next day if given the option. I had to wait 23 days and that was the hardest period ever. I made it worse by reading many horror stories on the support group site. I stopped after a while because I didn't know which stories I could relate to because I had no pathology reports to know what direction I'd be headed. It's a good reminder that most of the people who post are experiencing problems and looking for answers so it may seem like everyone who has a TT has a horrible time but it is skewed since many of those that adjusted quickly move on and stop posting. Thank God for those who stick around and give the thumbs up stories!

My 23 hour hospital stay was a nightmare simply because I had no sleep that night due to the patient next to me who moaned all night and kept me up. Why I didn't ask to be moved escapes me because I normally have no issues pointing out a bad situation and asking for a remedy. Oh well. I was off work for ten days. At the time, I had a desk job so it worked out. I have a very physical job now and I'm sure the recovery time would have been extended. Like Sue, I didn't take any pain meds. I was given tylenol with vikadin but didn't feel the need to use it.

I've had a bumpy road with my meds and am still working it out. It's more to do with the doctors in my area than the actual TT. The cancer allowed for my disfunctional thyroid to be recognized and treated. I am getting my life back and for that, I have no regrets. I'm generally a magnet for odd situations so please don't let any of my comments concern you.

I was also sick for a very long time with untreated MC and thyroid problems so I attribute my longer than normal road to recovery in part to that.