# Getting thyroid removed



## chicago (Nov 17, 2013)

I was just diagnosed with thyroid cancer and have to have it removed tomorrow. Not happy about it because my thyroid works great. I am so afraid of gaining weight. In my crazy head I would rather keep the cancer in my body and stay skinny instead of removing it and gaining weight. I work out a ton and I am hoping that will be a big plus to me not gaining weight. I plan on just juicing and eating very small protein meals until I am put on medicine. I really want to continue my exercise routine. Does that help even if you don't have a metabolism anymore when they remove it. I would love some advise and want to know personal stories. Thanks


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## Lovlkn (Dec 20, 2009)

chicago -

How did they determine you have cancer? If you are unsure about your decision or want a 2nd opinion, thyroid cancer is a slow grower and taking a few days or weeks probably won't make much difference. Take some time to get comfortable with your decision to remove and be sure you are comfortable with your surgeon.

As far as removal - you will not gain weight if you are properly medicated on replacement medications. You will need to insist they run Free T-4 and Free T-3 to get the most accurate idea of where your thyroid hormones are, mid to 3/4 range on each is your goal. If you have cancer they will need to suppress your TSH.

I had my thyroid removed 10 years ago - when I turned 40. My weight 10 years later (and as I approach 50) is +4lbs - mostly due to less activity and empty alcohol calories. My metabolism has always been above average and remains so today.


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## joplin1975 (Jul 21, 2011)

Hey Chicago (my hometown),

Don't let the weight thing get you too hung up. You've got cancer. It's easily treatable NOW, but if you wait, it could get increasingly difficult to treat.

Lovlkn is absolutely right. You will not gain weight if properly medicated. Now, if you need RAI post op and they decide not to start medication until after RAI, you might gain modest amount of weight for a VERY short period of time. As soon as you are medicated properly, it falls right off. In fact, I will say (with the qualification that I had autoimmune issues in addition to cancer) that it is ugh easier to lose now than before surgery.


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## chicago (Nov 17, 2013)

I found out I have cancer after they biopsied it. If I get the RAI 4 weeks after my surgery then they start you on the medicine right? I know they run your thyroid out for the month until I get RAI. I'm plAnning on juicing most of the month n eating a very mean low calorie diet. I'm very obsessed about my body so this has really upset me that they have to remove it. I wish there were other options.


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## ChrisP (Oct 29, 2013)

Hi Chicago,

Unfortunately it has to come out. Like the other said, as long as you're properly medicated you should be fine. Don't worry about it too much and try and take it easy after surgery, too. Keep us posted, welcome. xx :hugs:


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## chicago (Nov 17, 2013)

How long before they allow you to be active again. Weight lifting, walking and etc.


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## Andros (Aug 26, 2009)

Lovlkn said:


> chicago -
> 
> How did they determine you have cancer? If you are unsure about your decision or want a 2nd opinion, thyroid cancer is a slow grower and taking a few days or weeks probably won't make much difference. Take some time to get comfortable with your decision to remove and be sure you are comfortable with your surgeon.
> 
> ...


It's a good thing they found the cancer but I am sorry you have to go through this. Once you get on your thyroxine replacement, you will be fine. Weight wise and otherwise.

Here is some info to help you help your doctor to know what you will need by way of titrating your thyroxine replacement when you are ready to start on it.

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


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## joplin1975 (Jul 21, 2011)

Yes, I was put on medication at about four weeks. I would also suggest you inquire about thyrogen. It artificially raises your TSH without having to stop (or, in those case, start) you meds and it minimizes any side effects, including weight gain.

I was released to do any activity at 11 days. We re-roofed the house starting on day 11...it took about three days. I crashed pretty hard after that, but it was all because I wasn't on meds. Had I been, it would have been pretty easy, all things considered.

Sometimes, with all things thyroid, the trick is fine tuning the meds and less about the procedure itself.


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## chicago (Nov 17, 2013)

So what does the body feel like after surgery. When do you start to feel run down? Do you get depressed anxious. No one really has gone over this with me.


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## chicago (Nov 17, 2013)

Joplin. Did you have to do RAI? Because you can't go on meds until you do that.


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## joplin1975 (Jul 21, 2011)

I did have RAI and, yes, the "old way" is to stay off meds to go hypo naturally. Now, many doctors are putting people on meds and then using thyrogen to artificially raise you TSH levels ( a high TSH is needed for RAI). You don't have to go hypo and many people experience very little overall change in quality of life.


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## chicago (Nov 17, 2013)

Do you have to ask for it or do they automatically put you on thyrogen? I really don't understand any of this.


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## joplin1975 (Jul 21, 2011)

That depends on your doctor, but certainly ask about it ASAP...the shots are about $2k a piece (you need two), so insurance approval can take time.


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## chicago (Nov 17, 2013)

2000 a piece? Shit. I wonder if insurance even covers it. When did you have yours removed?


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## ChrisP (Oct 29, 2013)

I would think that typically the person would physically be able to after the medications have kicked in. But it depends, some people are different than others.


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## joplin1975 (Jul 21, 2011)

I had mine removed in 2011. At that time, there was a shortage of thyrogen and it was not available. That shortage has since been remedied and I have used thyrogen twice for my annual scans. My insurance covered the full cost both times (once with MVP and once with BCBS).


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## India (Sep 28, 2013)

My insurance (Anthem) covered Thyrogen. I had my thyroid out in Sept. and actually felt fine when I came home from the hospital (I stayed 2 nights), then got worse as my natural thyroid hormones ran out and the Cytomel had not kicked in yet (took about 1.5-2 weeks for the cytomel to make a difference). The surgeon said no heavy lifting for a week. At the follow-up appointment a week later he said I could resume normal activity.

I was on Cytomel then switched to Sythroid before having my RAI. I don't know why my endo put me on Cytomel first when my insurance covered the thyrogen, maybe because it kicks in sooner or he wasn't sure at the time what they were going to do next? I don't know. Bottom line, during the whole process of waiting for meds to kick in, I've been tired at times and had to take naps, and haven't done as much as normal. I just decided not to worry about exercise, weight, etc. until things have settled down.


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## chicago (Nov 17, 2013)

Well they removed my thyroid yesterday and they found cancer in 4 of my lymp nodes. I guess they were pretty large. That's just weird that it went there all in one year. I get this checked annually. The dr was glad I went through surgery. I was having second thoughts. Now I'm hoping all those lymp nodes is the same cancer. Thanks for all the information you have given me.


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## joplin1975 (Jul 21, 2011)

Welcome to the other side. I had 3 positive nodes. It would be highly unusual for it not to be thyroid cancer, so I think you are a-ok.

How are you feeling?


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## chicago (Nov 17, 2013)

I'm feeling ok but sore. He said ill b here a few days because of my calcium levels.


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## chicago (Nov 17, 2013)

What did they say about your three positive nodes? I thought this was a slow moving cancer. It's weird how fast it went to my lymp nodes. They were under the collar bone.


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## India (Sep 28, 2013)

Hope you recover quickly from surgery! I hated being in the hospital.


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## joplin1975 (Jul 21, 2011)

chicago said:


> What did they say about your three positive nodes? I thought this was a slow moving cancer. It's weird how fast it went to my lymp nodes. They were under the collar bone.


Oh, well, my surgeon's best guess was that the cancer had been growing for about ten or so years (again, it's a guess, but he's experienced so I doubt he's too far off)...so, yes, it is slow growing.

I had ten nodes removed -- the three positive nodes where closest to the thryoid. With RAI, you have a follow up scans and the uptake was significantly diminished, so we assumed the ablation killed everything. I've since had two scans and they were clear.


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## chicago (Nov 17, 2013)

Wow that is crazy. I think mine just showed up in one year since the nodule was not there a year ago. N yes it is supposedly slow moving. I'm suppose to get released from the hospital tonight provided my calcium levels are good. Today I feel like shit. My head is pounding n I am nausea This sucks.


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## Andros (Aug 26, 2009)

chicago said:


> Wow that is crazy. I think mine just showed up in one year since the nodule was not there a year ago. N yes it is supposedly slow moving. I'm suppose to get released from the hospital tonight provided my calcium levels are good. Today I feel like shit. My head is pounding n I am nausea This sucks.


Good to hear from you though. You are very strong. There is no place like home and when you get home you do what the doctor tells you to do. No heroics!!

Time for pampering.

Did you get staples, stitches or? How does it look? Do you have a drain in?


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## chicago (Nov 17, 2013)

I got stiches n a drain n it looks really good. He did a great job on it. Very impressed with my surgeon. Everyone says I picked one if the best. Now I guess it's a waiting game for the test results and getting the RAI. N then getting on right mess. Everyone on here has given me good information n that helps a lot. Thanks


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## chicago (Nov 17, 2013)

Well I got released tonight. Good to be home. When will I start feeling the effects of no Thyroid?


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## joplin1975 (Jul 21, 2011)

Yay!

You'll feel so much better at home.

It's hard to tell when you'll start feeling hypo. It depends on if you were hypo going in, if you had a thyroid dump during surgery, and hoe active you are...most people start really feeling it in two to four weeks.


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## Andros (Aug 26, 2009)

chicago said:


> I got stiches n a drain n it looks really good. He did a great job on it. Very impressed with my surgeon. Everyone says I picked one if the best. Now I guess it's a waiting game for the test results and getting the RAI. N then getting on right mess. Everyone on here has given me good information n that helps a lot. Thanks


I'll bet your surgeon carves a mean turkey! ROLF! And guess what? I think you might be able to swallow pretty good about the time the holidays roll in.

Glad you got stitches and also the drain. I think those staples would have to hurt. And the drain is a good thing so you don't get a hematoma.

Good deal!!


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## chicago (Nov 17, 2013)

I was not hypo going in. I'm a very hyper person so I'm hoping my energy level doesn't change dramatically. The drain was removed n stiches come out on Monday.


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## Andros (Aug 26, 2009)

chicago said:


> I was not hypo going in. I'm a very hyper person so I'm hoping my energy level doesn't change dramatically. The drain was removed n stiches come out on Monday.


Don't worry; there's a fix for that and we all will be here to help you. Hopefully you won't have to go doctor shopping. There is no reason why you cannot return to your normal self with a good doctor's help.


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## chicago (Nov 17, 2013)

That is what I am hoping. I go back to my normal energy level.


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## chicago (Nov 17, 2013)

So I found out that it spread to my para tracheal lymph nodes. Not sure if that is a common area to spread too, but it still was papillary carcinoma thyroid cancer. Anyone have that happen to them or do you know if it is common?


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## joplin1975 (Jul 21, 2011)

Yes, it's quite common.

It doesn't change prognosis but it can slightly change treatment and monitoring. That is, if you weren't sure about RAI, this would certainly be a good arguement for RAI. If it wasn't in your nodes, you could get away with blood work and ultrasounds...since it is, your doctor might recommend whole body scans with the blood work.


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## chicago (Nov 17, 2013)

Yes, I will for sure have to do the RAI. N in 6 months get a whole body scan to make sure everything is gone.


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## chicago (Nov 17, 2013)

They ended up finding cancer in 5 of the 10 lymp nodes they removed.


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## chicago (Nov 17, 2013)

So it's been 11 days since my surgery. I noticed my incision area was swollen. Does anyone know what that means? I went back to walking. No one said I couldn't. I know I can't lift weights for two weeks so I haven't done that.


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## joplin1975 (Jul 21, 2011)

Did it just start to swell? Or was it swollen and not going down?

Walking is really good.


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## Tribble101 (Oct 17, 2013)

Hello, I am really interested in this board. I am waiting on results myself. I had my thyroid out last Wed. I had a lymph node "stuck" to the thyroid. Doesn't sound particularly comforting. The dr told me there was a chance that they wouldn't tell me the results before Thanksgiving... Don't know whether that is good or bad. Several of the docs I had (before I got to my endo) feared lymphoma, so I am almost glad to see that it could be something else. I too have been worried about weight gain. All of this for me has just happened since September, my dr put me on Levathyroxin the day after my surgery. My parathyroids went nuts and I still can't breathe, but I am improving everyday.


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## chicago (Nov 17, 2013)

At Joplin it just started to swell on Saturday. It's still swollen. At tribble I'm surprised they put u on thyroid medicine already if it was cancerous n just removed. I c my endo on Monday to find out next steps.


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## joplin1975 (Jul 21, 2011)

Uh, strange. I would keep icing it and if it gets worse, call your surgeon.

Sometimes they start you on meds and use thyrogen to elevate TSH for RAI.


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## JasonJay (Oct 27, 2013)

Hello Chicago, I have read on these boards that swelling can happen beneath the scar or around it and that it subsides after a couple of days.


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## Andros (Aug 26, 2009)

Tribble101 said:


> Hello, I am really interested in this board. I am waiting on results myself. I had my thyroid out last Wed. I had a lymph node "stuck" to the thyroid. Doesn't sound particularly comforting. The dr told me there was a chance that they wouldn't tell me the results before Thanksgiving... Don't know whether that is good or bad. Several of the docs I had (before I got to my endo) feared lymphoma, so I am almost glad to see that it could be something else. I too have been worried about weight gain. All of this for me has just happened since September, my dr put me on Levathyroxin the day after my surgery. My parathyroids went nuts and I still can't breathe, but I am improving everyday.


How are you doing and did you get the results from pathology?


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## OhGee (Sep 29, 2013)

I have been diagnosed via biopsy with pappilary cancer. I'm having a full thyroid removal on Dec. 18th. Will the surgeon be able to tell at that time whether or not the cancer is also in my lymph nodes?


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## joplin1975 (Jul 21, 2011)

It depends.

If cancer is very invasive and the nodes look obviously diseased, then yes.

I had a lymph node mapping u/s before my surgery and nothing abnormal was found. My surgeon opted to do a prophylactic central neck dissection, not because the nodes looked bad, but because my thyroid did look nasty and none of the nodules were encapsulated. Turns out, three nodes had cancerous cells in them (determined in post-op path report).


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## chicago (Nov 17, 2013)

Hey does anyone know if you can drink Coconut Creamer on a RAI diet? I haven't seen it in the RAI food guide. Just curious. Thanks


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