# Anyone had their thyroid removed and regret it



## shorty85

following my previous post i just wanted to know has anyone has a choice to have their thyroid removed and had it done and regret it. I must add right now i dont know if i will even have to have it removed, but as my last scan indicated i have multiple nodules all over 2cm, my thyroid is enlarged and i have other health issues i think the ent will suggest it. if the ent does suggest it i just want to be prepared for what i should do. i find out hopefully at the end of this week if the ent wants to see me urgently or not


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## Lovlkn

Nope - I wish I had mine out sooner.

So much easier to stabilize on replacement than having a nodule infested thyroid and treating with anti thyroid medications.


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## Sabrina

My diagnosis then TT came really fast so I had little time to think about it. But even as I work towards feeling better post surgery with hormone levels, I know a few things.

One, my nodules were never going to get smaller on their own and they had started putting pressure on my throat, including difficulties swallowing and breathing when I was lying down.

Two, I didn't realize until after the surgery how AWFUL I felt. Having it done basically gave me my life back, I was hypo and didn't know it and fighting with adrenal responses.

The surgery and hormone balancing is a process. Personally I am glad I did it.


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## blackngold

Absolutely Everyday since


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## shorty85

can i ask why? i might have no choice will find out more on thursday


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## jenny v

Nope, it's worked out for me. I struggled for 10 years to keep my thyroid and it made my surgery and my life so much harder than it had to be. It took about 18 months to find a stable dose after surgery and I've had to work out some adrenal and iron issues along the way (which take time) but I feel so much better. I'm still amazed by the amount of energy I have now as compared to my hypo days.


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## blackngold

You do have a choice depends What is the reason for removal


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## blackngold

Jenny I wasn't hypo till now makes a difference I guess you've experienced both so maybe you are used to it I was hyper 4 years and really wished I had kept my thyroid life without it is a HUGE struggle for me I hate being hypo!!! its beyond DEPRESSING !!! seriously unless it's life threatening I wouldn't even think twice about it and go see a holistic doctor something I never did or even a doctor that just has time to figure things out one that's proactive and wants to check different things I've had to ask for every test from day 1 and actually diagnosed myself sucks being hypothyroid oh did I already say that yeah fml....


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## blackngold

Okay I would like to share a video


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## blackngold

Hopefully this helps !! Okay also check out the Graves' and hashimoto's Disease video also a must see !!!!!!!!!!!!!!!!!!!!!!!!!


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## Lovlkn

> i have multiple nodules all over 2cm, my thyroid is enlarged and i have other health issues i think the ent will suggest it.


The risk of cancer is greatly increased with nodules of that size. Removal could save your life -

Multiple nodules of that size will also make it difficult to stabilize on thyroid hormone replacement.

Is it an important gland - absolutely! If it is filled with nodules - it does not work properly.

The doctor who made the video is a chiropractor - a very opinionated one, who also sells books - alot of them.

While he does provide some valuable information he is extremely slanted toward keeping any thyroid, diseased or not. I have to disagree with keeping a disease nodule filled thyroid - the risk of cancer is too great.


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## shorty85

blackngold said:


> Jenny I wasn't hypo till now makes a difference I guess you've experienced both so maybe you are used to it I was hyper 4 years and really wished I had kept my thyroid life without it is a HUGE struggle for me I hate being hypo!!! its beyond DEPRESSING !!! seriously unless it's life threatening I wouldn't even think twice about it and go see a holistic doctor something I never did or even a doctor that just has time to figure things out one that's proactive and wants to check different things I've had to ask for every test from day 1 and actually diagnosed myself sucks being hypothyroid oh did I already say that yeah fml....


I have been underactive since 2011 and was diagnosed with hashis around the same time. I must also note as i have had melanoma twice and have a rare disease called castlemans. When i lie down i cant swallow very well and my breathing is a bit crap, at times depending on which way i sit or turn my neck it feels like something is moving and then clicks back out again its gross. My ent has requested a biopsy and i need to see him on Thursday. i also believe that castlemans can affect my thyroid and i have one node growing on the right hand side (these nodes will continue to grow until removed).


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## shorty85

blackngold said:


> Okay I would like to share a video


Thanks for sharing the video i started to watch it but think is based more on the side of you shouldn't have it removed but given my history and the fact i am not having it removed due to having graves or being overactive i think it is best i have an open mind and be prepared that is what my Dr will do, i am already on meds for life so that wont affect me.


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## blackngold

Good luck


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## jenny v

shorty85, you seem to be very well informed and have a good head on your shoulders, so feel confident that you will make the right decision for you. You've got a ton of big nodules, difficulty swallowing and breathing lying down (which I had, too, it's annoying), and a history of thyroid problems. Don't be surprised if they want to remove it. But make the decision that you are most comfortable with--it will be the right one!


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## tai.loong

Well my cousin was once operated at Mount Elizabeth the whole family supported him all throughout I saw him fighting when he was diagnosed with a thyroid nodule too. I don't know exactly what the term is but all I know is that his thyroid got removed. He told us that before he was really struggling with the pressure on his throat but after the operation he seemed to be completely back to normal. The family was thankful to Dr. Ranjiv Sivanandan. He was very kind to my cousin and to us all throughout the process.


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## creepingdeath

It seems most everyone on this site says it was the best thing they ever did.

I have talked to at least 4 woman in person while I was first diagnosed who told me no matter what I do don't let them take your thyroid out unless it is absolutely necessary.

Everyone of them said the same thing.

It was the biggest mistake they ever made and have regret it ever since.

Everyone is different when it comes to thyroid disease.


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## joplin1975

I think it "success" depends entirely on two things: 1) your ability to self-advocate and your understanding of how to medicate post-surgery and 2) your doctor's willingness to order the appropriate tests and offer the appropriate meds.

The posters who express regret and those who I have met in person don't have both factors going in their favor.


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## jenny v

I probably would have regretted my surgery if I had stuck with my original endo. After educating myself on what I needed to do to feel better and what tests I needed to look at to determine that, I realized he had no idea what he was doing. I firmly believe that a lot of thyroid patients have to take matters into their own hands and search hard for a doctor who is willing to work with them. A lot of people don't want to have to put in that kind of effort or don't want to go against what the doctor says, but a lot of times you have to do that to get your best treatment. It was hard for me to do it, but after years of feeling like crap, I got over it, lol.


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## blackngold

Something I have noticed after being on this board is that if you are doing so well post op why are you still here also so quick to give advice on removing it seems to be what I mostly see here when really helping someone save it would be best in certain situations yes be your own advocate and don't give people advice to remove their damn thyroid for graves disease cancer is different maybe even people with both graves and Hashimotos feel better post op people with goiters ect...but graves disease that is being managed well and could go into remission eventually no I want to help people understand that it's really foolish unless you are risking heart attack or thyroid storm just yeah I'm against it and best of luck to everyone going through this


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## Lovlkn

It's my passion to help others - which is why I stay.

I'm here - because I had someone to help me understand my thyroid illness and also help me through the process to have my thyroid removed. Then she was there to help me dial in my replacement hormone.

I understand - because I have been there - done that and therefore I feel I can give clear and unbiased advice to people who are too sick or anxious to figure things out alone. I have had the same struggles than many posters have with their doctors - and feel sharing my experiences can give them hope that someday they too can find some relief.

That's why I stay -


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## jenny v

I'm here to help others avoid going through what I went through--10 years of hypo/hyper swings to the point where my thyroid was so swollen and damaged at the end that surgery took 4 hours instead of 90 minutes. Surgery is not for everyone, but at the end of the day if I can give advice that will help someone who is not getting help from their doctors, their families or their friends, then it's worth it.

*blackngold*, I'm sorry things have not worked well for you, but people here are looking for advice, support and answers, and that is what we're trying to give. Also, please use punctuation in your posts, as they are incredibly hard to read. Thanks!


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## blackngold

I agree 100% with being here to help others not to have to go through what I'm going through!!

4 years of hyper would definitely trade it back !!

Being hypo they say is easier to control couldn't be more from the truth if you ask me.

I've never felt so out of control of my life until now

It can be so hard that you at times can't even trust your own instincts and you feel like it's all you think about and it's consuming you because your doctor is pressuring you to make a decision when really you don't even have to make a decision something I wished I had realized I didn't have to do anything just breath I hope the best for everyone and if what I've said has offended anyone not my intention just me telling you honestly how I feel good luck to you all !


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## benji37

I am new to this board. My now ex fiancee as of a month ago had total thyroidectomy about three years ago. We have been together for over 7 years. She had cancer nodules that were later found to be benign. She was okay after the first year and half or so and then everything changed. Any time of underlying psychological problem she had before the surgery, she was able to cope and manage easily. But since her surgery, every little issue has become progressively worse. Loss of libido, anger, paranoia, fatigue. The problem is that her physical symptoms didn't come all at once but rather in stages. I had no idea that her symptoms were related to her missing thyroid and was fluctuating from hypo to hyper like a yo-yo. She doesn't even realize that her problems are 90% related to her missing thyroid. I didn't even realize this until two weeks after she broke up with me by text message. She won't even talk to me on the phone. I was so naive and blamed everything on her work situation and her parents divorce. She's 30, I'm 37 and she lives with her mother a few blocks from me. She had all they symptoms of hypothyroidism. Hair falling out, brittle nails, swelling feet, muscle aches, severe PMS (PMDD), irregular menstrual cycles, severe depression, sleeping a lot, constant anger, lack of affection. The problem was that as each menstrual cycle went by, she got worse and worse. At first I thought it was severe depression with PMDD (Pre Menstrual Dysphoric Disorder, or extreme PMS). She shut me out for about four days over two months ago, again by text message and wanted to give me back the ring. After she had her period, she bounced back to "somewhat" normal, like nothing happened and wanted to be with me. I told her that I wanted to get her help and that she make an appointment with the gyno. She then told me that she went in her for tri monthly blood work for her synthroid dosage and she told me that her levels were very "low". So they upped her dosage and then she became worse. More paranoid, socially withdrawn, angry, irrational etc. I still did not know that these problems were coming from hyptothyroidsim. It wasn't until I waited after she broke up with me and her period passed that she still wouldn't talk with me. She even blocked my number. I prayed to God to help me and give me knowledge. A light finally went on in my head and I started to research all these symptoms until finally I realized that she was in a hypo state because of her thyroidectomy. All I want to do is help her. She doesn't realize that all of her problems are due to this hormonal imbalance. She has gone of the deep end and heading down a dark path. I'm worried to death because I love her so much and I feel like her soul has been stolen from her. This woman is the love of my life and I know for a fact that she is not herself. I'm completely heart broken and I want her to get better. I know that if she does not do anything different, like find another doctor, all she will do is the same as she has been doing for the past few years. This is simply to adjust her synthroid dosage, and nothing more. I'm very depressed myself about this because I was so stupid and should have realized this the whole time. My hands are tied behind my back and I can't help her because she won't let me. She is in no rational state of thinking at all. She has such paranoia that she even said that she was afraid that I will stalk her and then stab her with a knife. This talk is so out of reality that it's borderline psychosis. I need to get her help, I just don't know what to do.


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## creepingdeath

I'm here because everyone on here can relate.

And that we all know this disease is a bigger issue than the general public thinks.

Before thyroid disease I never even knew I had a thyroid.

I heard of it but only thought it was a women thing.

Boy was I surprised.

My thyroid problem is the worse thing that ever happened to me.

It knocked me on my ass more than any sickness I ever had and did permanent damage.

I'm OK and sure I'll live but I'm definitely different.

It's a treatment not a cure.

I guess any major change in our lives changes us forever?


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## jenny v

Do you have a relationship with her mother? If so, I would start there. If she's still living with her mom, that seems to be the best way to go about things, esp. if she has blocked you from contacting her and has made statements about you stalking her (if she is that paranoid she might contact the police and it could get messier). Since you're not a blood relative and she's an adult, I don't think there's much more you can do, unfortunately.


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## Sabrina

Sabrina said:


> My diagnosis then TT came really fast so I had little time to think about it. But even as I work towards feeling better post surgery with hormone levels, I know a few things.
> One, my nodules were never going to get smaller on their own and they had started putting pressure on my throat, including difficulties swallowing and breathing when I was lying down.
> Two, I didn't realize until after the surgery how AWFUL I felt. Having it done basically gave me my life back, I was hypo and didn't know it and fighting with adrenal responses.
> The surgery and hormone balancing is a process. Personally I am glad I did it.


I am not one of the ones who has done well post-op, so yes, I'm still around a bit. If I could go back in the time machine, I would go before I had nodules and work hard towards full body and thyroid health. Despite my post op issues, it was the right thing for me due to the size of the nodules, pressure on my throat, and the fact I barely felt like I was living life before.

I am grateful to have the input here from so many contributors, without them I would be lost. Seriously. I wouldn't understand the labs and their importance, I wouldn't have realized my last two doctors were unfit to treat me and found the one I have. I have had to advocate for myself, pay attention to my symptoms and I research different topics almost every day.

Without the people here, I would also feel very alone. I know almost no one in my life who has had thyroid sugery who I can relate to.

Please let me take this opportunity to thank you all again for all of your help and support.


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## blackngold

I agree I probably do not have those things going for me just bearly getting through the 3 back to back 12 hour shifts I work most of the time on 3 hours of sleep or less


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## visc

I have hashimotos, and a few nodules that were normal on FNA. The next step in a month or so is to get another US and see how my neck and collarbone area + thyroid look. If we see a significant change then we'll FNA again. Else we'll wait a year for the next US.

My greatest concern with TT is damage to the parathyroid glands. I don't want to be dependent on calcium three times a day. That sounds worse than keeping my thyroid.

But if it's done correctly, I don't think I'd have any concern besides getting my levels back... I don't think cutting it out would affect my adrenals like another said. I don't see the connection.


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## Lovlkn

The surgeons look for the parathyroids and will place them back into tissue if they are removed with the thyroid. In all the years of being on thyroid boards I don't recall anyone mentioning losing all parathyroids during a thyroid removal.


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## jenny v

I lost one parathyroid during my surgery but my calcium levels never dropped and I don't have to take calcium supplements. I had a friend who lost 3 of her 4 parathyroids, but she also had hyperparathyroidism, so it was an inevitable conclusion. She does have to take calcium, but only once a day so it's no big deal.


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## blackngold

I have a friend who is very young and can't even work because of her hypoparathyriodism and hypothyroidism just sad that the nausia and shaking keeping her from having a work life I wonder what she needs to figure out and get back track recently also had gallbladder surgery not sure what to tell her except run some labs cbc cmp vit d and all the thyroid tests ..............


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