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.

:eek:

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.

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.

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

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.

Threads with medical advice and anecdotes go in IMHO, so I’ll move this thither for you.

twickster, MPSIMS moderator

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

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 :eek:

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.

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.

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.

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.

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.

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.

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.

Lost mine due to cancer a few years ago but now wish I’d 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. I’ve 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.

I’ve no proof of this, but I feel that the three endocrinologists I’ve seen in the last few years prefer to eliminate the thyroid’s 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.

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.

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.

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.

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.

I could have written exactly the same words about my wife. No problem whatever.