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  #1  
Old 10-18-2011, 05:31 PM
carlotta carlotta is offline
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Tell me about life without a thyroid

I have cysts/nodules/thingys in my thyroid. The surgeon I saw today said there's nothing in my needle biopsies to indicate cancer but they might come up cancerous one day and if I want I can have it removed right now.



DO NOT WANT


It makes no sense to me. I feel great. I went for a physical just because I hadn't been sick in so long I was afraid I'd fall off my GPs roster. He said my thyroid felt weird, sent me to somebody else, etc. etc.

Anyway, I'm not having it removed now, but he made it sound like one day I probably would.

I can go read the millions of thyroid posts on other forums, but the Dope is my comfort zone. You are my people. And some of you no doubt don't have a thyroid. Tell me about it.
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  #2  
Old 10-18-2011, 05:39 PM
not what you'd expect not what you'd expect is offline
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Please get a second opinion.

25 or more years ago, I was told I needed to have my thyroid removed for the same reasons.

Nodules, and bumps and what have you. They stuck the needle in my throat (yes, that hurt).
They recommended immediate removal on a less than 5% chance of it becoming cancerous.
I think Dr's are Gods, so I was all set to let them do it. My husband insisted I get a second opinion.
I had to wait for an insurance change before I got that other opinion, but the new guy was appalled. He said there is a test you can do to KNOW if there is a problem. I had to swallow a pill and then he looked at some pictures and they read cold instead of hot, so we were fine.

I can't say who was right since I'm not a Doctor I guess, but it has been a long time, I still have my body part and have never had any problems so far.

Good Luck.
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  #3  
Old 10-18-2011, 06:13 PM
Digital is the new Analog Digital is the new Analog is offline
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Best I can give you is second hand information..but since no one else has stopped by for the specific question (although not what you'd expect's comments are useful), I'll give my information.

A close friend of mine of 15 years or so had her thyroid out before I met her. She takes synthroid daily.

Since I've known her, we've:
played in the same volleyball and softball leagues for years
drank lots of beer (and occasional shots)
traveled around the world to go scuba diving
gone skiing half a dozen times
run a handful of 5ks


She's also gotten married and had a healthy kid.

Bottom line - she takes a pill every day, and lives a very normal life.


-D/a
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  #4  
Old 10-18-2011, 07:04 PM
iamthewalrus(:3= iamthewalrus(:3= is offline
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Someone I know well also has to take thyroid medication regularly. For her, it's not quite as simple and easy as Digital's friend.

When her dosage is working well (which is the majority of the time), things are great. When it's not, things are shitty. She has no energy at all and just feels tired, sick, and negative. Basically, it's a long-term managed health issue. For the most part you can live a normal life, but there are times when it's going to suck. Not sure how that compares to the alternatives.
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  #5  
Old 10-18-2011, 07:10 PM
twickster twickster is offline
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Threads with medical advice and anecdotes go in IMHO, so I'll move this thither for you.

twickster, MPSIMS moderator
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  #6  
Old 10-18-2011, 07:57 PM
StGermain StGermain is offline
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I had my thyroid removed about 4 years ago. My nodules had grown so large that I was choking at least once a day while swallowing, and my neck always felt like I was wearing a too-tight turtleneck. My sister, nephew and aunt had all been diagnosed with thyroid cancer (papillary carcinoma), so there was that worry, too, although my biopsy was clear.

My thyroid turned out to so calcified that the surgeon had to chisel it away. I had some vocal issues for a couple months after surgery. But my life really isn't any different. I still occasionally have trouble swallowing, but I think the nerves may have been a little damaged during surgery. My speaking has fully recovered. I took a thyroid supplement before and take one now.

StG
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  #7  
Old 10-18-2011, 09:42 PM
kiz kiz is offline
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I had mine removed three years ago for nearly the same reason why carlotta had hers removed -- in my case I had a nodule that had practically swallowed one lobe. It was visible. I was rushed to the ER when I choked on a piece of bagel. The swollen part had nearly blocked my esophagus

As someone else mentioned, all I do is take a pill once a day in the morning. My levels are tested once every 3-4 months -- when they're OK, everything's OK. When they're not, I feel like a damp dish rag, lose my appetite, and want nothing more to do than sleep.
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  #8  
Old 10-19-2011, 06:20 AM
Lightnin' Lightnin' is offline
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My wife's thyroid just up and died on her about twenty years ago. She takes a pill daily, but otherwise leads a completely ordinary life.
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  #9  
Old 10-19-2011, 07:21 AM
Scubaqueen Scubaqueen is offline
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Originally Posted by Lightnin' View Post
My wife's thyroid just up and died on her about twenty years ago. She takes a pill daily, but otherwise leads a completely ordinary life.
ditto for me. no issues, just the daily pill.
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  #10  
Old 10-19-2011, 07:54 AM
Sattua Sattua is offline
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I've had a nonfunctioning thyroid for 17 years. I take the pill every day, too. I often get away with going a whole year between blood tests to make sure the pill is the right dosage. Managing on Synthroid isn't a big deal.

Having said that, get a second opinion before you have surgery.
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  #11  
Old 10-19-2011, 08:05 AM
zeldarae zeldarae is offline
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I had the right side of my thyroid removed in March of this year due to a very large nodule (non-cancerous). I've been taking synthroid for a couple of years now. I take it first thing in the morning, before I even get out of bed all the way. I can't emphasize enough how much better I feel than I did for an entire decade of my life.

Get a second opinion, but don't be surprised if they recommend the same thing. Your nodules will only get bigger and become more of an issue.
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  #12  
Old 10-19-2011, 09:31 AM
madmonk28 madmonk28 is offline
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My wife had her thyroid out when her doctor found cancer, but as others said, we got a second opinion before the surgery. She has to take a pill the rest of her life, but other than that, she doesn't notice any change to the quality of her life.
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  #13  
Old 10-19-2011, 11:15 AM
Jelly Roll Jelly Roll is offline
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I had my thyroid removed 4 years ago due to thyroid cancer. As others have posted, when my Synthroid dosage is good, life is good. When it gets off, life is not so good. I have to have blood work done every 6 months (it wa more frequently right after I had it removed) to make sure my "levels" are where they should be. I can usually tell when they are off without blood work though.

I just went through an adjustment after having been on the same dose for a year. While we were finding my new, right dose, I had to see the doctor and do bloodwork about every 4-6 weeks over the course of several months. During this time of adjustment, my hair fell out (which will continue for about 5 months), my face broke out, I gained some weight and just felt "blah" in general (tired, cranky, no desire to do anything). Now that I'm on the right dose, I'm losing less hair, my face is clearing up, I lost the weight and I feel like myself again.

I suppose the bottom line is that there are worse things than living without a thyroid and having to take a pill every day for the rest of my life. But I would never recommend that someone have their thyroid removed unless absolutely necessary. While Synthroid is a pretty good hormone replacement, nothing is as good as your own body's thyroid hormone.

Edit: I forgot to talk about the brain fog. During an adjustment period, my brain takes a vacation. I have trouble concentrating, I can't complete thoughts, I get easily distracted. That's probably the worst part of the whole deal when my thyroid levels are off.

Last edited by Jelly Roll; 10-19-2011 at 11:17 AM..
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  #14  
Old 10-19-2011, 11:25 AM
levdrakon levdrakon is offline
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I have Grave's Disease which is mainly hyperactive thyroid. My doctors really, really want to kill my thyroid and stick me on synthroid the rest of my life. I'm resisting it too.

Doctors really love this "no thyroid/manage synthroid forever" combo.
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  #15  
Old 10-19-2011, 11:38 AM
Troppus Troppus is offline
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Lost mine due to cancer a few years ago but now wish Iíd waited and watched. Unless you have cancer or your thyroid is seriously malfunctioning, no once-per-day pill can replace the constantly adjusting thermostat that is your natural thyroid gland.

Even when my labs reflect an acceptable range of hormones, I have a window of time each day in which I feel healthy, clear-headed, and strong, which usually lasts 10 or so hours after I take the pill. Most days I crash by evening, and lose my ability to concentrate and stay on task. Iíve been through every thyroid replacement hormone, both generic and name-brand, and also added Cytomel (which has helped tremendously, but still no replacement for my thyroid). I've had bouts of hair loss, lethargy, and general disinterest in life and activities. Sometimes I feel well; sometimes I feel as though I'm coming down with a bug.

Iíve no proof of this, but I feel that the three endocrinologists Iíve seen in the last few years prefer to eliminate the thyroidís input to better regulate hormone levels via prescribed meds. Easier for docs, sure, but easier for the patient? No guarantee. Is the convenience of reliable lab work enough reason to remove a functioning organ before it shows clear evidence of disease? Not in my opinion.
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  #16  
Old 10-19-2011, 12:22 PM
gonzomax gonzomax is offline
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http://thyroid.about.com/cs/nucleare.../a/chernob.htm
I saw a program on the thyroid cancers that are very common around Chernobyl. In some cities, the neck scar was very common. They have to take a pill everyday. But it did not kill them.
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  #17  
Old 10-19-2011, 01:34 PM
kelly5078 kelly5078 is offline
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I have a friend who was strongly advised to have her thyroid removed 30 years ago. She didn't. She's fine.

So I echo the second opinion line. And it should be someone good. Many doctors are lazy, many are incompetent, and many surgeons just want to cut.
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  #18  
Old 10-19-2011, 01:53 PM
Voyager Voyager is offline
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At a checkup about 20 years ago my doctor did the hand on throat thing and felt a lump. I never had any symptoms. I had half my thyroid removed. When I woke up they told me there was a 99% chance of it being benign and a 1% chance of it killing me in a month.
I've been fine ever since, though I started taking synthroid about 10 years ago. No effect I've ever noticed.

ETA: BTW, synthroid is even cheap, so that is another plus.

Last edited by Voyager; 10-19-2011 at 01:54 PM..
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  #19  
Old 10-19-2011, 02:15 PM
Sattua Sattua is offline
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When I was first diagnosed with thyroid disease, the endocrinologist said that he had a dream about moving to a new town and diagnosing the mayor with thyroid problems, then putting him/her on Synthroid. It's that easy, that cheap, and makes that much of a difference.
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  #20  
Old 10-19-2011, 02:23 PM
Hari Seldon Hari Seldon is offline
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Originally Posted by Lightnin' View Post
My wife's thyroid just up and died on her about twenty years ago. She takes a pill daily, but otherwise leads a completely ordinary life.
I could have written exactly the same words about my wife. No problem whatever.
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  #21  
Old 10-19-2011, 03:50 PM
carlotta carlotta is offline
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Originally Posted by Sattua View Post
When I was first diagnosed with thyroid disease, the endocrinologist said that he had a dream about moving to a new town and diagnosing the mayor with thyroid problems, then putting him/her on Synthroid. It's that easy, that cheap, and makes that much of a difference.

What?

It's that easy for an endocrinologist to build up a practice?
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  #22  
Old 10-19-2011, 09:38 PM
Tom Tildrum Tom Tildrum is offline
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I had nodules in my thyroid diagnosed a few years ago and a negative biopsy, and my doctor never suggested removal. More recently, I've been diagnosed with Graves disease, but I don't know if it has any relation to the earlier nodules. I have been taking meds to control the overactive thyroid for about the last 18 months, and it is showing signs of returning to normal.

Burning out my thyroid has been mentioned as a fallback treatment but not seriously suggested at this point. As long as the hyperthyroid treatment pills are not having negative side effects on my liver, it seems like I can continue them indefinitely.
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  #23  
Old 10-20-2011, 08:00 AM
Sattua Sattua is offline
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Originally Posted by carlotta View Post
What?

It's that easy for an endocrinologist to build up a practice?
Supposedly because he'd become the town hero and lauded and wined and dined and get a ticker tape parade and stuff.
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  #24  
Old 10-20-2011, 09:03 AM
Frylock Frylock is offline
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Originally Posted by Digital is the new Analog View Post
Best I can give you is second hand information..but since no one else has stopped by for the specific question (although not what you'd expect's comments are useful), I'll give my information.

A close friend of mine of 15 years or so had her thyroid out before I met her. She takes synthroid daily.

Since I've known her, we've:
played in the same volleyball and softball leagues for years
drank lots of beer (and occasional shots)
traveled around the world to go scuba diving
gone skiing half a dozen times
run a handful of 5ks


She's also gotten married and had a healthy kid.

Bottom line - she takes a pill every day, and lives a very normal life.


-D/a
How much does the pill cost?
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  #25  
Old 10-20-2011, 09:13 AM
GoodOmens GoodOmens is offline
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My wife recently (July) had her thyroid removed due to a very early cancer. She'll have to take Synthroid for the rest of her life. At the moment she's on a higher dose in order to keep her in a state of hyperthyroidism, which prevents another hormone from promoting thyroid activity which could result in the return of the cancer. Likely, she'll be in that situation for many years; it tends to make her more jumpy and anxious, and she feels hot a lot.

She gets tired easily, and may have to end her chorus singing.
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  #26  
Old 10-20-2011, 09:24 AM
levdrakon levdrakon is offline
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Originally Posted by Interrobang View Post
My wife recently (July) had her thyroid removed due to a very early cancer. She'll have to take Synthroid for the rest of her life. At the moment she's on a higher dose in order to keep her in a state of hyperthyroidism, which prevents another hormone from promoting thyroid activity which could result in the return of the cancer. Likely, she'll be in that situation for many years; it tends to make her more jumpy and anxious, and she feels hot a lot.

She gets tired easily, and may have to end her chorus singing.
IANAD, but what they're probably doing is trying to keep her pituitary gland from producing Thyroid Stimulating Hormone (TSH - the docs' favorite thing to test for) which in turn stimulates the thyroid (and cancer cellls?) to produce thyroid hormone.
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  #27  
Old 10-20-2011, 09:37 AM
Jelly Roll Jelly Roll is offline
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Originally Posted by Interrobang View Post
My wife recently (July) had her thyroid removed due to a very early cancer. She'll have to take Synthroid for the rest of her life. At the moment she's on a higher dose in order to keep her in a state of hyperthyroidism, which prevents another hormone from promoting thyroid activity which could result in the return of the cancer. Likely, she'll be in that situation for many years; it tends to make her more jumpy and anxious, and she feels hot a lot.

She gets tired easily, and may have to end her chorus singing.
I was kept hyper for just over 2 years. I was always the hottest one in the room (temperature wise, of course) until my doctor started weaning my dose down. I still stay on the warm side most of the time, but I don't burn up like I used to. FWIW, I was always super cold before I had my thyroid removed. I routinely wore sweaters in July. In Texas.
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  #28  
Old 10-20-2011, 02:59 PM
LilyoftheField LilyoftheField is offline
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Originally Posted by Frylock View Post
How much does the pill cost?
I have no health insurance so I can't speak for what insurance will pay, but I get a three month supply of synthroid for $10. If I bought it on a monthly basis, which is what you have to do while your dosage is being adjusted, it would still only cost $4/mo.

So, yes it's inexpensive. But it doesn't do as good a job at keeping you feeling well as your actual thyroid gland does. So I'm in favor of getting a second opinion before opting for surgery.

(FWIW, I still have my thyroid - it just lost most of its effectiveness due to Hashimoto's thyroiditis and I've been on synthroid for 15 years.)
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  #29  
Old 12-02-2012, 08:57 PM
mcspanky mcspanky is offline
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Life Without a Thyroid Will Never Be The Same

Nobody has posted in here for a while, so who knows if anyone will see this.

Unlike other posters, I will tell you my life has never been the same since having my entire thyroid removed in 2005. I had cancer, a huge goiter on my neck, biopsied and scanned. They took the whole thing out, paralyzed my right vocal cord in the process. It never came back. I had radiation therapy, and another scan five years later where I had to take a lower dose of radioactive iodine to see if the cancer has returned. They tell me it hasn't. But when it does, and it will within 30 years, it could be anywhere -- my lungs, bones, brain -- and it's still regrown cancerous thyroid tissue. Weird, huh.

The weight gain never ends, even when I eat one bean a piece of lettuce, or exercise all day long. My weight especially ballooned when a psychiatrist put me on Lithium, which should NEVER be taken by those without thyroids. It causes hypothyroidism in people with normally functioning thyroids. I went into a myxedema coma and nearly died. You can look that up. It's horrible.

Now I'm on Synthroid and no Lithium, and I lost 40 pounds in one month and my neuropathy (numbness in both hands but not my legs, thank God) is clearing up with a daily dose of Gapabentin.

But even though my thyroid levels are allegedly "normal" and my Synthroid is supposedly "working," I have never regained the energy pre-thyroidectomy. My brain is muddled and forgetful. I yawn all the time and have to take frequent naps. My legs often feel as if they are made of lead.

I suppose all these people who say "one pill and life is back to normal" have not had their entire thyroid removed. So maybe they still have threads of metabolism. My metabolism is shot, and it's not coming back. The dirty little secret endocrinologists won't tell you.

Would I do it again? I guess I'd have no choice. It was a big ball of cancer on my neck.

The funny thing is, my hair had been falling out for 10 years prior to this, my skin dry and scaly, nails brittle, and I got my thyroid tested several times and was told it was normal.

Then, after my cancer diagnosis, they told me thyroid cancer is slow-growing and I'd probably had it for 10 years and that's why the hair loss, etc.

Make up your minds, medical science! In my experience, few doctors know anything about this, and they're never willing to tell you the worst.

I don't want to scare anyone, and if you think you've come out of this the same, then I'm so happy for you and so glad you didn't end up like me. If you did end up like me, just know you're not alone. Especially if you get psychiatric diagnoses post-thyroidectomy. They're also part of the fun package.

Life without a thyroid, for me, has never been the same. Guess that's all I wanted to add.

Last edited by mcspanky; 12-02-2012 at 08:58 PM..
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  #30  
Old 12-02-2012, 09:46 PM
kiz kiz is offline
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Originally Posted by mcspanky View Post
I suppose all these people who say "one pill and life is back to normal" have not had their entire thyroid removed. So maybe they still have threads of metabolism. My metabolism is shot, and it's not coming back. The dirty little secret endocrinologists won't tell you.
:nodding: It's amazing how dependent your body is on that little butterfly-shaped gland, isn't it? Regulating the metabolism is its biggest job, but it also affects hormones, especially if you're female: I went through an earlier-than-what-was-expected menopause when I had my thyroidectomy.

If I miss a dose of levothyroxine, I literally drag myself through the day. I won't have any appetite whatsoever, and I'll just be content to sit until I start sprouting moss. I'll also swaddle myself in multiple shirts/sweatshirts/hoodies because I'll register the slightest stir of air as being subzero. It sucks, especially since I've always been one of those balls-to-the-walls types who has to be doing several things simultaneously. When my levels are off I don't give a crap about anything except sleep.

As for psych diagnoses, I was hyperthyroid for a number of years before I went the other way (Hashimoto's tends to do that, btw). At one point my hyperthyroid levels were so much off the chart that my therapist at the time labeled me bipolar. After I had the thyroidectomy everything leveled out. No hyper behavior whatsoever. I get exhausted now just thinking how insufferable I must have been during that period
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  #31  
Old 08-03-2013, 02:00 PM
floydsgirl floydsgirl is offline
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thyroid

Hi, I came across your blog in a search of how to loose the post thyroid surgery weight. You sound like me, where your thyroid was not bothering you at all. I had a hug cyst on my thyroid (it was actually sticking out of my neck!) but I didn't even know it was there until the doc pointed it out on a routine physical. My thyroid functions were normal, but the needle biopsy was abnormal. All said and done my thyroid was out 2 1/2 months after they found the cyst, which turned out to be non cancerous. Life without thyroid is ok, I'm tired, but I always was. I have an ugly scar on my neck, and a little weight gain that I haven't been able to shake, but it's only been 8 months. I get dizzy now, and car sick, and have some vertigo some days that I never had before. Over all, if it's functioning fine, I think I would leave your thyroid alone until it bothers you, if it ever does. People are saying now that thyroid cancer doesn't really spread usually, if you have it, so you may be able to leave your thyroid alone forever. If you are uncomfortable with the thought of thyroid cancer (like I was) then you might want it removed so you don't ever have to worry. Just know there will be the side effects that people mentioned, but you can get better over time. Good luck!
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  #32  
Old 08-03-2013, 08:32 PM
Tethered Kite Tethered Kite is offline
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People are often given the option to remove or closely monitor. The second opinion is a good idea.

I'd like to comment on the psychiatric issues. They are often connected to thyroid problems. Sometimes that's the first indication that something is amiss. I'm not convinced that if one's thyroid hormone is checked and found to be in the normal range that it was the removal of the gland itself that caused the difference.

For me it was sudden bursts of rage. My boss told me once I was the most even-tempered of her workers. And then prior to diagnosis I was throwing things and yelling. Yikes. A co-worker said, "It's good to see you lose your temper. I thought you weren't human." I was so embarrassed.

Although there was a degree of post-surgery trauma for me that was similar to PTSD. And that took a while to get over. After all, I had just had my throat cut and my body doesn't know the difference between a surgeon and Jack The Ripper, I guess.

There was also a period of time where my calcium balance was awry because they also removed the parathyroids. So - muscle cramps and discomfort. Once that resolved it has remained stable and my bone scans are sufficiently healthy.

My thyroid tumor, a cold adenoma, had grown too large to remain and so I had it removed. I'm not far from the Mayo Clinic and had a doctor who was introduced to me as one of the leading experts on thyroid disease so I felt as though I was getting good treatment.

I have my blood test for it annually and have never had a deviation in thirty-eight years. Still take the same amount of Levothyroxine as I have for years. But, yeah, I've slowed down some in three decades. Maybe I could get a boost?

Good luck in whatever you choose, OP.
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