Life after Thyroidectomy

rranduxar said:

I feel so incredibly duped...

I was just diagnosed with thyroid cancer (spread to the lungs at this point) and they want to remove my entire thyroid. This would mean that I would depend on sythetic hormone replacement for the rest of my life. When I told my kids about my diagnosis, my 14 year old daughter took to the internet in search for information. 
What she found was horrendous, and she shared it with me. 
These were her exact words, since this was a message she sent me via text, "First they poison our food so that we get sick, and then they make money from that. Lots and lots of money."
That's how I got introduced to GMO product information along with other things that even made me cry. Also information on how pharmaceuticals really make their money. I also came to the realization that after 100 years of great scientific advances EVERYWHERE ELSE, a cure for cancer has not been found yet? Could it be that if they find it, someone's piggy bank is going to be affected? 
I don't feel like having this surgery. 
I really don't. 
Patient after patient keeps complaining that these synthetic drugs are not helping. If anything they feel so much worse... and nobody out there seems to be listening. All I had to do was go on patient forums, and it was one testimonial after another on how miserable most patients are with these drugs. 
I was a high school teacher for 13 years, and just because I don't hold a medical degree doesn't mean that I can't read. The doctor never told me about any of these adverse reactions post surgery. In fact, she barely even spent ten minutes explaining anything. 
Truth is that we don't have a voice. 
They give us forums like this one to vent, but no real solutions. The more I read about the Gerson Therapy and other therapies out there, I feel hope. Those, however, are not as easy to do as they seem. Doctors claim over and over again that there is not proof that they work. 
Well... I have found proof (TONS OF IT) that synthetic hormone replacement therapy only causes an array of new ailments that require MORE medications. 
They say that this is survivable. 
Roger Ebert was diagnosed in 2002 and he did what he was told by the book. 
He died this year from non other than papillary thyroid cancer. 
My son is only 10. 
My daughter 14. 
Should I go with shorter span and better quality of life? 

OR
Should I go with a bit of a longer span, making pharmaceuticals more powerful, and a poor quality of life? 

Which one? Seriously. 
My heart goes out to all of you. 
I am not giving up on hope, but there has to be another way. There just has to, and it's really up to us to find it. I refuse to be at the mercy of those who keep lying to us, telling us that they have made advances towards a cure, but have failed to show proof. 
IT's a mirage. 
I'm so done. 
Sincerely, 
Rose

Rose,

I don’t think you should expect to find a direct answer here to your question of whether or not to use hormone replacement drugs. The form of treatment you take is ultimately up to you. But you should know that you can find as many success stories and support from this community as you can find tales and warnings of failure. We’ve all been touched by cancer in form or another.  Personally, I had thyroid cancer in 1997 (complete thyroidectomy) and have been on Synthroid ever since with no signs of thyroid problems.  While my overall health has not what I consider perfect, I cannot point to the replacement hormone as the sole cause. Everyone is different.  I’ve recently gone through a 2^nd cancer episode (esthesioneuroblastoma) 2 years ago and ask myself every day “how” and “why”.  Both cancer instances are likely genetic, but it sure makes me wonder, like the articles you’ve cited, if our food supply or other environmental factors, are causing this.  Either way, I’m fighting it, and doing what I can to help others.

Prayers to you and your family,

David

Baldy said:

Success vs Failure for TRH

David & Rose,

I agree David, there are as many successes as failures on this support group.  I too had a total thyroidectomy (2/2011) and have been on Thyroid Replacement Hormone (Levothyroxine - generic Synthroid) since.  I haven't had any side effects that I can tell except maybe I heat up a little more easily when active and cool off a little more easily when inactive.  I guess this is to be expected since my thyroid hormone blood levels are constant now instead of being regulated by an active throid (or I'm just getting old - I'm not Baldy because of chemo).

I think it's also a fact that people who have undergone the same treatment that David & I have undergone (total thyroidectomy & TRH therapy) and have had no or only minor side effects, are much less likely to post here as people who are having problems.  If I remember correctly, I have read that most people (95%?) who are on TRH therapy have no or only minor side effects.  And, those who do have problems can sometimes find relief by switching to one of the natural dessicated drugs (porcine, bovine or a mixture of both) that are made from animal thyroids.

Alan

Hello,

I have been on synthroid since 2004 had all thyroid removed but now this year having problems with little strength and no energy and gaining weight. Doc says levels are good raised my synthroid up some but no help. Have not scanned in 6 years was waiting for 10th year but thinking about taking injections and then doing scans. Never had any problems like this till this year and it is taking me down so bad go grocery shopping then I am down the rest of the day. My daughter and husband do alot that I cannot do now. I feel like my thyroid level is low but doc says its fine well I do not feel fine. I go back to doc this week to see where we go from here.

I found out that I had thyca just before my release from federal prison. The surgery to remove the 7cm mass on one side and the 4cm mass on the other went well. Since my release, a few weeks after the surgery, I've been seen by the local hospital whose care although slow thanks to the government has been exceptional. I just had RAI a few days ago and will have a whole body scan in a couple of days. The ups and downs in mood, energy, mental ability and weight are taking it's toll on me.  I generally nap a few times a day for 2-4 hours at a time. In addition to all of this medical stuff I'm dealing with, I'm unemployed and broke. I've applied for disability, which you would think I qualify for considering that I've always worked and paid into the system until I went to prison, but according to them this type of cancer has a good prognosis and I can still work. Kind of had to go apply for work and then say hey by the way a few times a day I may have to take a nap or I may be quarinteened because I'll be radioactive. I'm often depressed and honestly not getting the kind of support emotionally and certainly not financially from the few people still in my life. I was beginning to think that something was wrong with me, but finding this discussion bored tonight let's me know what I'm experiencing (medically anyway) is the norm. I just have to hang in there until I'm adjusted to it. 2013-10-07

renem1221 said:

did anyone do the i 131 tests yearly?
i seen a new endo last month due to insurance and he sent me back to my main doctor to have him request the follow up scans. they were going to have me do the i 131 radiation test to make sure none of the rest of my body has cancer. i refused it. i didnt want to be taken off my meds for a week and feel like crap more than i do now, especially being in school all year long and working.so i just did the neck ultrasound. does this sound strange?
i trust no doctor/endo, ive had so many and the good one i had who found my cancer i lost due to unaffordable insurance. now i take generics for my diabetes that gives my diahrihaand take ibs meds to stop it. lol i have accepted that i wont have quality care till i make some serious money in my career in the next two years. in the mean time COFFEE.

lord i gotta keep on moving.

hi i read your post about the 131 test. i had my throid removed in february of this year and had to have 131 treatment shortly after. being off my meds for a few days had me feeling like crap. i was tired,moody,forgetful. my doc says i'll have to have more 131 for the next five years : ( . is this normal? like me my mom also has throid cancer and had to get 131 as well. sometimes i wonder why this had to happen to me?! well ....

on the bright side its nice to know that im not alone in this fight. there are ppl out there who share the same concerns like me. i dont feel alone anymore.

missbrown said:

131 tests

hi i read your post about the 131 test. i had my throid removed in february of this year and had to have 131 treatment shortly after. being off my meds for a few days had me feeling like crap. i was tired,moody,forgetful. my doc says i'll have to have more 131 for the next five years : ( . is this normal? like me my mom also has throid cancer and had to get 131 as well. sometimes i wonder why this had to happen to me?! well ....

on the bright side its nice to know that im not alone in this fight. there are ppl out there who share the same concerns like me. i dont feel alone anymore.

Hi I;m new just got my thyroid totaly removed on November 1 2013 and it was Papilary Cancer. I have to go for the I 131 I beleive and I have to have the ablistion also sorry if not spelled right have you had that??? And what do u do after the 48 hrs alone what happens to the stuff you have touched such as your couch or chair do you know???  Thanks squirrel76

pabbers said:

Hi

Hello,

I agree with what you are writing;  I had a thyroidectomy in October, 2011.  The residual emotional changes have been difficult because I know that something is changed within me.  I never used to have an issue with anxiety and now this is a new emotion that I realize needs to be managed, if not, my emotional well-being deteriorates.  It has been a matter of realizing what my baseline emotional well-being is and realizing that I do  not want to go beneath that baseline.  Otherwise, the emotional turmoil begins.

Another difficulty, has been that some relationships have been strained as a result of expectations that I should be "better" as the "cancer is cured".  This is very frustrating because I know I am not myself and that something is different and there is an expectation to behave the same before the thryroidectomy.  I appreciate the relationships that have been supportive and recognize the changes that do take place and the emotional roller coaster than can occur from one moment to the next.  I remember right after the thyroidectomy and radiation I would cry and would seem that I would not be able to stop and felt a vacancy and void inside of me that was overwhelming.

I am glad there is this message board because it helps to know that others experience the same residual effects.

Hi pabbers

you have said very well indeed: the emotional part of it and anxiety (and sometime the depression following it) seem to be a part of this disease, especially in the beginning and may be related to the dosage o fthe medication; hang in there - hopefully over time they will get better.

people around us expecting to be the same as before this ordeal is not fair; somethings change; going thru a cancer diagnosis followed by surgery/treatment, fear of reccurence and other cancers and being on a pill that body needs some time to adjust to changed me, impacted me, and to some extend also pissed me off. yet in these enduring times, there is strength as well; so be kind to yourself and know that you deserve way better recognition and credit and respect for going thru all of these.

all the best,

candid

Hi All,

I recently had a total thyroidectomy (1st of May 2014) and I'm due to have RAI treatment in 4weeks.

My story starts after having a lump (goitre) near my throat that started growing 6 years ago. Along side this I was diagnosed with an underactive thyroid. For many years I assumed the 'lump' in my throat was due to swollen glands when I used to get sick with the flu or cold. I often felt lethargic but just ignored it due to the doctors telling me it was nothing. In October last year I finally went to the doctor  after my grandmothers insistance and by this point the goitre had grown significantly and was starting to protrude outwards. I had a biopsy and I was told the tumor was benign. I was told that it would eventually need to be removed but that I could wait 5 or 10 years at most, but that I would have to get tests done every 6 months to monitor the growth as it could put pressure on my wind pipe and I could eventually stop breathing!

It wasnt a difficult decision to make, I decided to have the total thyroidectomy as Im single and dont have kids and I knew the recovery process might be long and tiresome. At least I only had to worry about myself.

Thank god I chose to have the surgery, once the tumor was removed I was told I had Thyroid Cancer! I count my blessings that I had the surgery, if I had listened to the docs and waited I wouldnt have known about the cancer until later on and at that point it could have spread.

Right after the surgery I was put on calcium tablets and yes I lost my voice. I'm lucky that my voice eventually came back, but I would suggest only speaking when necessary and not to have cold drinks. If possible drink them at room temp or hot drinks. Try to avoid ice in drinks too, its not good for your throat / voice. I had the calcium tablets for a week after my surgery and I dont need to take them any longer according to my blood tests.

I'm now on Levothyroxine. I was started on 125mg, however after speaking to my endo and complaing of being incredibly lethargic they increased it to 150mg. Since I'm having my RAI treatment in 4 weeks they've suggested to hold increasing the doasge any further until after treatment. Please note that before RAI treatment you dont have to stop your meds, the docs can give you injections before your RAI treatment that allow you to stay on your meds. I will be having these injections for two days before my RAI treatment starts. I'll still have to go on the low iodine diet but at least I can take my meds. I still feel very tired and suffer from lack energy, like others I've also put on weight. The research I've done demonstrated that with a good diet, moderate exercise and good supplements I can lead eventually a near to normal lifetsyle. I'm taking vitamin D tablets and b12 however I take my thyroxine tablets first thing in the morning at least an hour before food and take the supplements midday as this helps the thyroxine absord into the body better.

I have any achy body some days which stops me from doing anything too physical, walking and sitting hurt but I find a occasional massage helps.

I've also started to supplement my diet / lifestyle by drinking green juices at least once a day. Vitamins from its natural source is the best. Kale, spinach, cucumber, ginger and a green apple is the best. I highly recommend green juices - organic fruit and veg is better if available.

I also suffer from brain fog and it has started to affect my work, luckily my boss is understanding and I try not to put too much pressure on myself as I know its not my fault. Its a result of my condition.

I'm lucky to have supportive family and friends around me who keep me going but sometimes I get frustrated when I get told by doctors and family ' its the best cancer to have' WOW, does that annoy me !?!! Any cancer is bad, no one asks for it and no one deserves it. It gets me down but I pick myself up. I have to as my other half has lung cancer and when I see what he goes through with the chemo and radiation I do think that in some ways I am lucky, at least I dont have to go through chemo - its heart breaking.

I keep going as I have my future with my boyfriend to lookforward to. He is getting better and eventually I will too.

All I can say is hang in there. Have a goal in mind to work towards. Think positive, we all have our bad days, believe me I know, but try to think positive and knowing that even though we may have hit rock bottom, the only way is up.

I hope some of my advice can help you. and I wish you all best wishes and good health.

Hi Everyone!

I also had to have my thyroid removed. So where to start, I randomly started getting seizures Jan 2011 exactly two weeks after my 22nd birthday, which already sucked and then *boom* they found a lump on my thyroid in Aug 2011, I had my total thyroidectomy done Nov 2011. Thankfully they caught the cancer early, by chance my boyfriend at the time and my mom noticed a bump on my neck and had to go thru all the needle in the neck biopsy, etc. Obviously everyone knows you need your thyroid and when they told me that any lump over 1cm they would have to take the entire thyroid out...just my luck, mine was 1.2cm. The surgery overall wasn't that bad, yeah of course you end up with a scar on your neck, but that's to be expected. I would have to say the worst part of it all was (and still is) the fact that my parents refuse to let me show my scar. They're very old school Chinese parents, so they don't want people asking about it. I am expected to keep it covered up with a necklace, scarf or turtleneck. Considering I was born in Canada, I don't see the issue with my scar at all...I call it my "second smiley face" :] I never cover it up (unless it's winter of course haha!) No one ever asks about it and the people who do know about me having cancer can barely even notice it, they all think it's just a typical wrinkle on my neck. 

I was at first quite upset about that, and the fact that I felt like the world was against me and did become depressed. I had really amazing people who tried their best to cheer me up, that helped me quite a bit (my stupid a-hole boyfriend at the time wasn't as supportive as he should have been, but not everyone is like that). There were my religious friends who said: God has better plans for you. I would always reply: if there really was a God and if God really wanted me to be here, why is he putting me thru all of this ****?!?! My non-religious friends would tell me that I'm here for a reason. I really didn't want to hear any of it especially because I was still randomly getting seizures and...I ended up with cancer in the lymph nodes on the right side of my neck March 2012. 

I had gone thru one cancer already and then it really was like: what the ****?!?!?! I honestly did have suicidal thoughts at that point, but I tried to keep my chin up as much as possible. Yeah, it sucks, I'm going to have to take a thyroid pill every morning til the day I die and I hadn't reached a quarter of my life yet. On top of that being epileptic and having to take seizure meds don't help either, I'm currently on a combination of 3, so in total everyday I take 17 pills a day. I got really pissed off with my family for being overprotective of me and not letting me tell anyone they know what really happened with me health-wise. I ended up in really aggressive physical fits with my dad (turns out my mood swings got increased from my seizure meds) but I hated the world and didn't want to be here anymore. 

I actually ended up losing a lot of weight and looked like skin and bones, it was horrible. I had to try to fatten myself up without eating unhealthy fast foods and stuff, which was hard. I didn't want to be around anyone. I just wanted to be in a plastic bubble and for people to leave me alone. But when I started distancing myself from everyone I realized I was getting even more depressed and angry with life. I started looking at the bigger picture. You realize just how many people care enough about you to help you get thru the bad times. Yes, I am here on earth for a reason. The fact that I didn't have a thyroid wasn't a big deal, there are a lot of people a lot worse off than me, and not only that I survived cancer not once, but twice. If I wasn't here anymore, there would be so many loving and supportive people who cared enough about me that I would be hurting. I am alive. It doesn't matter that I need to take more care of myself health-wise, in the end...I. Am. Still. Alive.

I was lucky enough that both times it was caught early and not late. I decided, lets only focus on the positive and not the negative. (Easier said than done of course) It's just a bump in the road, I still have the rest of my life ahead of me. I set goals for myself and I'm not gonna let anyone stop me, not having cancer twice, not my seizures, nothing! And right now, I am proud to say I am currently cancer-free. And the scar, it just shows you that you're stronger than the thing that tried to beat you! I show my scar with pride and never let my parents or anyone else stop me.

Always keep your chin up, and the weight issue, that's always going to fluctuate, which is always going to be annoying for women :P I would take having a bit of fat over being skin and bones anyday! Plus it just means I get to go shopping more often now heehee!! I always keep two different sized clothing for whenever one is too tight or too loose. And now get to go to the gym and I meet different people which I love, and of course the music is always fun to listen and dance to! I've changed my diet to be gluten-free, which wasn't as hard as I thought it'd be. Some of the stuff actually tastes really good! I've actually also reorganized my room so that there's always things to remind me of all the caring people who supported me along the way as weird as that sounds. 

Sure it's been a bummer seeing friends around me graduating university, working, getting engaged, married, having kids, etc. And I haven't had the chance to do any of those things, but I'm not gonna let me being sick at one point stop me. Things in life for me are just going a bit slower than everyone else's. I'm okay with it, I'm only 26. And now, I'm extremely proud to say I've accomplished two of my goals I set for myself, one of which was including getting a job I'm happy with, but also I plan to go back to school and get my university degree. Nothing is going to stop me, not my seizures, not my previous cancers...nothing!!

I live by the motto: "Live, Love, Laugh". Live as if you were to die tomorrow. Love is better than anger. And a reminder to laugh everyday! You only live once, so might as well enjoy it while you can with happiness rather than anything else! Hope this helped not only you but others as well! :]

~*Jilly*~

evamommyof4 said:

RAI

i had the same, my surgery was in May 2013 and RAI treatment in July, the tough part was the last two weeks before RAI treatment, because i had to be off thyroid meds for 6-7 weeks, then the isolation after the treatment was not bad, I stayed in another home for 7 days, indoor all the time, slept a lot, but slowly started getting my strength back, now 4 months later I feel great!! I've stayed with a positive attitude that only God could have given me, I'm at peace, and like the song says: I'm an overcommer! And you can be too! Just put your trust in him  

 

God bless!!

I came to this website while on a track looking for aerobics for thyroid patients. Didnt know such a site existed.

I had Total Thyroidectomy a decade back for papillary CA of thyroid. After two years of the surgery, I had to go through RAI treatment and isolation and so on. Those were little hard days but not as much as I get to see from some of the mails here. God's grace indeed ! Children were always on my mind so had to fight back and negotiate and persist with God in prayers. Following RAI, there was regular level check and Thyroglobulin checks. Initially, the tests were every 6 months and now a year.

Let me tell you, other than the memory of such an illness and the processes associated for follow-ups, I do not have any hangover. I lead a completely normal life with husband and kids. I am a complete hands-on mother, manage my stressful professional life at an IT firm and doing enough of social work. I write here to tell you that all of this will come if you believe that you can. Pray with faith and hope; love people, love the poor, resolve to be joyous and at peace; remember that whenever Jesus visited the faithful after his resurrection, he always reminded "Peace be with you". You can receive joy only in peace. What may come let it come but believe it is for your good and for the good of the system around you. Believe in the impossible while you pray.

I am not using this forum to inspire a certain faith. For me, since my memory began, it was to belong to Jesus and Mary first. For you, it could be another faith. So let it be. God the Father is One Creator and it is in love that he created everything. So look upon everything with love. The essence of all religion is this. Thyroid cancer as I read in one of the posts here is better of than many other kind, but dont think of it. It is your will that allows God to do his actions.  I bless that nothing bad happen to any of you. you will survive this ordeal. Read inspiring and miraculous survival stories through our friendly internet.  Cheers !!!

I had my thyriodectomy 3 months ago due to papillary cancer. I am posting this to LYK all symptoms you've described are 100% valid. I had been a naturally thin woman my whole life. Having gained 25 pounds of extra weight in such a short time frame (5 months prior to discovery of tumor) has been a humbling experience. I'm frustrated by the inability to feel normal. As per Endocronologist my healing process is "on track" and TSH levels test within normal range. You're not alone. The act of having a therapist in play is very smart. I have had a psychiatrist for over a decade to be preventative & proactive in overall mental wellness, and I'm so grateful that when cancer diagnosis came that therapy was already part of my normal life. Re: being told this is the best kind of cancer to have....it is true...however don't let that discount your physical suffering or emotional struggle. We can be grateful that our survival rate is excellent and still acknowledge the journey of our recovery is extremely hard. No one persons thyroid behaves exactly like another. Losing this organ effects every other system of the body. The thyroid is the regulator of our cardiac function, hormones, digestion, nuerological functions, and metabolism.

Give yourself some credit. You're not crazy. You are a survivor. You are worthy of the patience it will take to feel like yourself again.