# questions about tumor/thyroid removal



## parkerra (Aug 13, 2011)

I just found out I have the tumor. It is a follicular neoplasm so my dr says I have to have it removed along with part of my thyroid. I'm concerned and scared about this for a whole lot of reasons. There are so many risks involved with this surgery and long term affects of thyroid removal. I know that since there is a chance of cancer it has to come out. But, I can't help but feel a little bitter about the situation. The basics of the surgery, risks etc are all pretty well addressed everywhere on line. What I'm having trouble with are the petty details like: Am I definitely going to gain a lot of weight? My husband says it doesn't matter as long as I'm ok. At the risk of sounding completely vain, it does matter to me. I can't stand the thought of gaining a lot of weight and having no control over it. Next, does everyone have to take meds forever after the surgery? If I only have to have part of the thyroid removed is it possible to not have to take meds and my thyroid still function properly? I guess what I'm getting at is that if I have this surgery and find out that I do not have cancer it seems like I'm kind of throwing my body and my mental well being into a nasty crap storm for nothing.


----------



## paisleyheart08 (Jul 23, 2011)

I only know a VERY limited amount. If you have the whole gland removed then yes, you definitely have the take meds for the rest of your life. I have read that if only one lobe is removed you may or may not have to take meds. I think it just depends on whether or not the other lobe can produce enough hormone. I'm sure someone with more experience with this will write you with more info.


----------



## webster2 (May 19, 2011)

parkerra said:


> I just found out I have the tumor. It is a follicular neoplasm so my dr says I have to have it removed along with part of my thyroid. I'm concerned and scared about this for a whole lot of reasons. There are so many risks involved with this surgery and long term affects of thyroid removal. I know that since there is a chance of cancer it has to come out. But, I can't help but feel a little bitter about the situation. The basics of the surgery, risks etc are all pretty well addressed everywhere on line. What I'm having trouble with are the petty details like: Am I definitely going to gain a lot of weight? My husband says it doesn't matter as long as I'm ok. At the risk of sounding completely vain, it does matter to me. I can't stand the thought of gaining a lot of weight and having no control over it. Next, does everyone have to take meds forever after the surgery? If I only have to have part of the thyroid removed is it possible to not have to take meds and my thyroid still function properly? I guess what I'm getting at is that if I have this surgery and find out that I do not have cancer it seems like I'm kind of throwing my body and my mental well being into a nasty crap storm for nothing.


I am sorry about all of this. I think if you are very conscientious about your diet & exercise plan, you shouldn't gain too much, or any when your blood levels are in the right place.

I had half taken out 20 years ago. The surgeon said to take synthroid for life to protect the remaining thyroid & my heart. I did take it for awhile. The GP said I could get by without it. Two weeks ago, I just had the other half out. I now have Graves and it was papillary cancer. I'll never know if I had taken it, if the outcome would have been the same. The last 2 years of my life were not fun.

I wish you the best with your decision, and best possible outcome.


----------



## Lovlkn (Dec 20, 2009)

> Am I definitely going to gain a lot of weight? My husband says it doesn't matter as long as I'm ok. At the risk of sounding completely vain, it does matter to me. I can't stand the thought of gaining a lot of weight and having no control over it.
> 
> 
> > I was worried about that as well - as long as you are properly replaced you should not gain excess weight.I weigh less today 7 years post op than I did before my TT.
> ...


If they do a partial you may not need any replacement. Be sure you get you or thyroid ab's tested every few months to see what your body is doing post op. Insist on FT-4, FT-3 testing- they will likely run TSH in addition.


----------



## erinhansen (Sep 11, 2011)

parkerra said:


> I just found out I have the tumor. It is a follicular neoplasm so my dr says I have to have it removed along with part of my thyroid. I'm concerned and scared about this for a whole lot of reasons. There are so many risks involved with this surgery and long term affects of thyroid removal. I know that since there is a chance of cancer it has to come out. But, I can't help but feel a little bitter about the situation. The basics of the surgery, risks etc are all pretty well addressed everywhere on line. What I'm having trouble with are the petty details like: Am I definitely going to gain a lot of weight? My husband says it doesn't matter as long as I'm ok. At the risk of sounding completely vain, it does matter to me. I can't stand the thought of gaining a lot of weight and having no control over it. Next, does everyone have to take meds forever after the surgery? If I only have to have part of the thyroid removed is it possible to not have to take meds and my thyroid still function properly? I guess what I'm getting at is that if I have this surgery and find out that I do not have cancer it seems like I'm kind of throwing my body and my mental well being into a nasty crap storm for nothing.


Hi, I have a few things to say that may help you out. I'm not a doctor, though. Are you certain this lump is a tumor? It could also be a a simple nodule, or a goiter (an enlarged thyroid). I'm sure you're around 30 or older, and thyroid problems can actually be quite common in women 40 and over. I understand your concern about this as lumps are scary and make people think "cancer." However, if your doctor is only an "ear, nose and throat" doctor, I would not take his/her word seriously. They do not specialize in the thyroid as much as endocrinologists do. You need to get a second opinion and see an endocrinologist. They will be able to give you new and more accurate tests. Also, if your current doctor just gave you a fine needle aspiration biopsy, know that those are not that accurate. If you don't have any results, you should not get it removed. If you truly think that it has grown, you should visit an endocrinologist. If it hasn't grown, keep an eye on it and have yearly blood tests. 
I understand what you are saying about how there are clear complications from removing the thyroid gland, and that they are well known online. Here's the problem with many doctors though: your doctor may have said that a little weight gain is a possibility, but doctors under exaggerate. My father is going through a cancer treatment, and the doctors left out a majority of the painful things that happen because if people knew about all these nasty things, a majority would never agree to go through such a treatment. That is how many doctors will present things to you. They will give you the smallest chance of problems that they can get away with. Here are common stats I've found online: Nearly 100% of people will full thyroid removal do become hypothyroid. Over 70% of people with partial thyroid removal also become full hypothyroid, if not partial. Therefore, the weight gain is nearly unavoidable. Many doctors today jump to invasive procedures such as surgery, and when it may not even be necessary in the end, the results can be devastating. I don't want to scare you, I just don't want you to become one of the many people who buy into unqualified general physicians' biased opinions. 
About the meds: many people have a year-by-year regimen of medication they need to take in order to maintain their current thyroid function. I've heard of people only needing it for a few weeks, a few months, but also for a five or ten year plan. As women age though, and especially after menopause, our metabolisms and estrogen levels drop, so keeping weight off is even more difficult. If you were to have your entire thyroid or even part of it removed, your thyroid will always function differently. Honestly, it just depends. Some individuals' bodies are able to regulate their normal level, but almost everyone is affected to some extent. 
I am a 20-year-old female, and I noticed a bump on my thyroid almost two years ago, when I was 18. Since then, it has not gotten any bigger, but I can obviously still feel it. I recently had two appointments with different doctors. They both did a fine needle biopsy. Coincidentally, they later told me that the test is not very accurate and decisive. After the test with my second doctor came back "inconclusive," he immediately began asking what dates I had open so that he could schedule a right thyroidlobectomy, at his own ear, nose and throat office! I thought to myself, "you've got to be kidding me." I instantly said no, that I wanted results, and that I would be going elsewhere. This doctor reminded me a lot of "House," if you've ever seen that show. "House" is sort of a blunt jerk to his patients haha.

Overall, I recommend you research different testing methods, visit an endocrinologist, and have regular blood tests to monitor your thyroid hormone levels. If the bump does not grow and you can still breathe/swallow fine, I would not recommend surgery as it most likely will mess with your body and it will affect you for life. The chances of you having thyroid cancer are only 5%, which is a high guess considering you don't have solid results. Monitor yourself for now, always always always do your own research!

if you have any questions or need any help researching, feel free to contact me, i'm erin at [email protected]


----------



## mysarojane (Sep 11, 2010)

Don't feel bad about asking the vanity questions! We all do it! When my doc explained that there were severe side effects for my taking Coumadin, I immediately asked if my hair was going to fall out!!

Best advice I can give you is to take charge of your medical care. Ask questions here and from your docs, get copies of your lab reports, take a notebook or a friend with you to appointments to write things down as your head may be spinning on information overload. Research, research, research until you are happy with the information you have and can use it to make a positive decision and you feel in control.


----------



## Andros (Aug 26, 2009)

parkerra said:


> I just found out I have the tumor. It is a follicular neoplasm so my dr says I have to have it removed along with part of my thyroid. I'm concerned and scared about this for a whole lot of reasons. There are so many risks involved with this surgery and long term affects of thyroid removal. I know that since there is a chance of cancer it has to come out. But, I can't help but feel a little bitter about the situation. The basics of the surgery, risks etc are all pretty well addressed everywhere on line. What I'm having trouble with are the petty details like: Am I definitely going to gain a lot of weight? My husband says it doesn't matter as long as I'm ok. At the risk of sounding completely vain, it does matter to me. I can't stand the thought of gaining a lot of weight and having no control over it. Next, does everyone have to take meds forever after the surgery? If I only have to have part of the thyroid removed is it possible to not have to take meds and my thyroid still function properly? I guess what I'm getting at is that if I have this surgery and find out that I do not have cancer it seems like I'm kind of throwing my body and my mental well being into a nasty crap storm for nothing.


Welcome!

You do have control over the weight. Get on a very sensible diet NOW and get it in your mind that you are going to overcome this.

Find a really really good doctor who will get you on the right thyroid replacement for you!

Join a gym NOW! There are a lot of things you can do to avoid disaster. I do not consider this vanity. I consider it good common sense healthwise and otherwise.

I doubt seriously that you will find out you do not have the cancer. I presume you had FNA (fine needle aspiration?)

Talk to your doctor about your concerns NOW! If you doctor fluffs you off about this, find a doctor that won't!

You may or may not have to take meds. And in fact, once they are in there, the surgeon my see a reason to take the whole gland. Talk to your surgeon about this. With cancer, this may be the case. And you might have to have RAI also. Your doctor can explain.

I am so sorry you have to go through this but ulitmately you will come out a winner.


----------



## parkerra (Aug 13, 2011)

I'm finally back. Thank you all for your help and insight. I'm 2 1/2 weeks post op. The tumor was removed along with the right side of my thyroid. They did the lab test during the surgery to see if it was malignant. The blasted thing was "inconclusive" just as the FNA was. I didn't find out until 3 days after the surgery it was benign.

Now I have a whole new set of problems. My weight has been up and down like crazy. Down 10, up 5, down 7, up 3 and so on. My hair is falling out and is dry like straw. My face is breaking out like a 17 year old boy. But, my big issue is mood swings. I mean drastic. Most of the time I just want to lock myself in the bedroom and sleep. The least thing (or nothing) sets me off and I get so depressed. I know it's irrational, even when it's happening. But, no matter what I do I can't get control of it. I don't feel hopeless or dangerous at all, so no concern of me doing anything drastic. It's just a deep sad depression. I have absolutely no energy at all. I have to force myself to get things done. My surgeon doesn't want to see me for a month to do lab work. Regardless, I don't feel comfortable with him monitoring me. I feel like I need to go directly to an endocrinologist. Oh yeah, forgot to mention I had a partial hysterectomy a few years ago (had a tumor, imagine that) and I'm in this seemingly endless menopause (I'm 36) and now throw this thyroid issue on top and I'm sure my body doesn't know what in the world is going on.

So, taking all of this into consideration are mood swings like this normal right after the surgery? Do I need to skip all the other nonsense and go directly to an endocrinologist now? I need to feel better. This constant fluctuation is taking it's toll on me. Fortunately I have the most supportive and understanding husband and son, but I know it's upsetting for them, too.


----------



## Octavia (Aug 1, 2011)

Your regular doctor can run labs for you, but it's not a bad idea to make an appointment with an endocrinologist. Was your surgery done by an ENT or a general surgeon (who would know a lot less about follow-up care)?

When you do get labs done, be sure to ask for the "right" and complete labs. That's not my area of expertise, but I'm sure Andros could give some great advice for that.

Are you taking any thyroid replacement at all (yet)? You may not need to, but you might. That's probably why they're waiting to do your labwork...seeing if your remaining half picks up the slack...


----------



## Andros (Aug 26, 2009)

parkerra said:


> I'm finally back. Thank you all for your help and insight. I'm 2 1/2 weeks post op. The tumor was removed along with the right side of my thyroid. They did the lab test during the surgery to see if it was malignant. The blasted thing was "inconclusive" just as the FNA was. I didn't find out until 3 days after the surgery it was benign.
> 
> Now I have a whole new set of problems. My weight has been up and down like crazy. Down 10, up 5, down 7, up 3 and so on. My hair is falling out and is dry like straw. My face is breaking out like a 17 year old boy. But, my big issue is mood swings. I mean drastic. Most of the time I just want to lock myself in the bedroom and sleep. The least thing (or nothing) sets me off and I get so depressed. I know it's irrational, even when it's happening. But, no matter what I do I can't get control of it. I don't feel hopeless or dangerous at all, so no concern of me doing anything drastic. It's just a deep sad depression. I have absolutely no energy at all. I have to force myself to get things done. My surgeon doesn't want to see me for a month to do lab work. Regardless, I don't feel comfortable with him monitoring me. I feel like I need to go directly to an endocrinologist. Oh yeah, forgot to mention I had a partial hysterectomy a few years ago (had a tumor, imagine that) and I'm in this seemingly endless menopause (I'm 36) and now throw this thyroid issue on top and I'm sure my body doesn't know what in the world is going on.
> 
> So, taking all of this into consideration are mood swings like this normal right after the surgery? Do I need to skip all the other nonsense and go directly to an endocrinologist now? I need to feel better. This constant fluctuation is taking it's toll on me. Fortunately I have the most supportive and understanding husband and son, but I know it's upsetting for them, too.


Glad the surgery is behind you. I will say this, "Inconclusive is , well.................inconclusive and that usually is not good." So, I am glad you had the surgery.

Some of the symptoms you are having can be caused by the general anesthetic. It sometimes takes up to 6 weeks to get it out of your system. Drink plenty of water.

It probably would be a very good idea to go ahead and get labs so you know where you are at w/this. You don't need a specialist to order these test and start you on thyroxine replacement. A GP, Internal Medicine..........etc..

TSH, FREE T3 and FREE T4

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

You may already be hypo and need to be started on thyroxine replacement.

Guideline for TSH 0.3 to 3.0 Guidelines for FREE T3 and FREE T4; most of us feel best with it in the 75% of the range given by your lab.


----------



## parkerra (Aug 13, 2011)

I've been busy. Lots of internet research and calling doctors. I can't get into an endocrinologist until November. I can't wait that long. I'll be insane. So, I have made an appointment with my primary care dr for tomorrow (tuesday). I do like her but I feel like she takes a lax approach to things that I feel need more attention. For instance, my thyroid function before the surgery. She said tests came back fine. That has to be impossible. It had a golf ball sized tumor growing on it. However, I did keep track of what labs she ran then and free t3 was not one of them. I will be insisting on that one tomorrow. Beyond the tsh, free t4 and free t3 is there anything else I should ask her to order? I'm also going to ask for the results from my last tests and this round. I want to see the results myself. Also, I've heard of decicated thyroid supplements are working for some people. I bought a bottle but I haven't taken them yet. I'm going to see what happens with this appointment tomorrow. Sorry I'm rambling. I feel like I'm all over the place now.

OH! One more question. My body temperature has dropped. It's been around 96.2. I've only got to 97 once in the past week. Could that have something to do with this nonsense, too?


----------



## parkerra (Aug 13, 2011)

Well, the dr was the complete opposite of helpful. She said as long as I have part of my thyroid then it's fine and doesn't need monitored. She was furious when I demanded that she order the lab work. She refused to include the t3. She told me that level was irrelevant. Obviously I'm going to have to find a new doctor. A little depressing right now considering how I feel and now I have to start from scratch.


----------



## Andros (Aug 26, 2009)

parkerra said:


> Well, the dr was the complete opposite of helpful. She said as long as I have part of my thyroid then it's fine and doesn't need monitored. She was furious when I demanded that she order the lab work. She refused to include the t3. She told me that level was irrelevant. Obviously I'm going to have to find a new doctor. A little depressing right now considering how I feel and now I have to start from scratch.


I guess at the age of 68, I am losing touch with the ways of society. How dare the doctor be furious with her patient! What in the heck is up w/that?

Yes; you need to find another doctor.

Did you have to pay her? That is the part that really makes me mad!

By the way, that is FREE T3 you want.

Read this please; go to the link.

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


----------

