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Life after Thyroidectomy

Kelli_Means_Warrior
Posts: 2
Joined: May 2012

Hi...

I'm a recent thyroid cancer survivor. I had my surgery on 12/14/11, and my life hasn't been the same since. Though it was successful, it seems like everything else is in a tailspin now. On top on struggling with the stresses on an unhealthy relationship with my Mom, dealing with the fact the I just had my world flipped upside down by cancer, and life in general...I kind of feel like a big old trainwreck these days.

My levels are all fantastic, so good in fact that I don't need to be seen for another six months. I am suffering in the aftermath of this **** storm though, and can't find joy in anything these days. My engery comes and goes so easily, I'm moderately depressed, and ugh-do I have to mention the weight gain? I put on roughly 35lb since December and feel so uncomfortable in my own body. The best way to describe what it's like would be to say I've been invaded. Can anyone offer some encouragement as far as regaining your body back? I know my surgery wasn't too long ago...and that I need to be patient...but I'm kind of at the end of my rope. It's so frustrating. I've started therapy, but I figured this would be a great resource as well since we're all in the same thyroid-less boat.

Of course I know that there is another (deadly) alternative to what's happening to me...and everyone says that Thyroid Cancer is the best kind to get...but no one ever mentions the metabolic and psychological effects after a thyroidectomy. So...does anyone out there have some positivity for a gal like me? Thanks so much...

All the best,

Kelli

amorriso
Posts: 186
Joined: Oct 2010

I had a very down period for about 6 weeks after my last RAI and again after my last surgery. I gradually got myself back to feeling like my old self, but it did take time.

I was fortunate not to have the weight gain that many experience, but a year of basically sitting around left me feeling very flabby and out of shape.

So I started with making myself walk in the evenings - not fast or far, but it did help. Then I bought 10 sessions with a personal trainer - I filled him in on my history and simply said I wanted to get myself back in some kind of shape. It wasnt cheap, but I knew if I just went to a gym on my own I wouldnt stick with it. This way I have to get my money's worth. The trainer is a great motivator too!

I really found that helped everything...my moods, energy...and how I feel about my body. I rarely have down times now - and when I do it seems to coorespond with my period...I think our hormones really get messed up with this.

Be kind to yourself -you've been through a lot...Healing takes time - both mind and body. You will get there!

KathyF322
Posts: 1
Joined: May 2012

Hi Kelli,
I always say to my Doc I wish they would design a thyroid transplant. Take one out put another back in. You never really pay attention to that little gland until its gone. I am a 4 year survivor so far.(and in the 50 plus, age group) One thing is everyone is different and reacts differnetly. but if you try something always double check with your ENDO doctor, since you are early in the diagnosis stage.
I have tried everything. I am on list of vit's: Vit D, calcium, multi and daily helpings of Yogurt. Also just started researching Medertianian diet (excuse the spelling brain fog a lot). I have noticed that over time I have gotten better, but still no energy or strength, and depressed off and on. I switched primary care doctors and the new one suggested strength exercise, since I dont have the energy and no stregnth at all. I recently came across a harvard publication of such exercise.
(website: http://www.health.harvard.edu/) you need to register check it out, its helpful.

I order the pamplets and with the help of my husband coaching me on I am going to give it a shot. I dont know if it will work but I am willing to try. All I can suggest is try talking to your primary care doctor, I have found that ENDO doctors have one goal, keeping the cancer away and keeping you hyper. No a bad thing, thats what they are suppose do, keep you cancer free. I am very invovled with my primary care and she is wonderful in helping me out. I hope this is of some help, I remember feeling the same way you are right now, hang in there your body needs time to adjust and heal from all the stuff it just went through. Best wishes and God Bless.

bouncer
Posts: 27
Joined: Apr 2012

Well, I am glad it's not just me!

I have had a long haul, after being diagnosed March 2011, 3 ops (tumour out, rest of thyroid out, small remnant that was missed out) and finally RAI in April this year. I have been putting on all the weight I lost on the low iodine diet (and which I needed to lose), and I feel very lethargic and, basically, depressed. Being 62, and forcibly retired, I am virtually housebound as I have nothing to do other than walk the dog.
I am back to hospital on Monday, to see the Oncologist and get the results of my post RAI scans, and some blood tests I had yesterday. Hopefully it will be good news and I will be able to look forward once more.
In the UK, we do have a charity, the Macmillan Nurses who, as well as providing care to cancer sufferers, are also a goldmine of information and advice, but nothing much helps when you are stuck at home with little or no motivation.

renem1221
Posts: 6
Joined: May 2012

hello,
I wish i had something positive to say about life after thyroid cancer/ surgery. ive had hypo/hoshimoto's disease since i was 10. i went untreated till i was 18 because my parents just never followed up. when i was 13 i started self medicating with narcotices and sad to say i felt better and lost weight. when i was 17 i realized it was not working anymore and i need help. when i was 18 i moved in with my husband who took me to specialist after specialist until i was about 20 when we found the right one. took so long cause i had no money for insurance. finally, the endo i found helped me but she found that i had already developed diabetes, polycystic ovaries, and i.b.s. i started synthroid and cytomel and did the whole exercise and diet thing and lost weight. when i was 23 i was unable to get out of bed from being dizzy so i went to my endo. she performed lots of biopsy's and the last one was positive for cancer. last year in january had a thyroidectomy and rai. then lost insurance for 6 months and now im back at it. looking for a new endo but i have a great internal med doc.
I have gained all my weight back, my hair is thin, i get sick all the time due to the hoshimotos (autoimmune), and my hope is slim. i maintain weight now at a peak of 254. i keep failing my courses in school because i cannot seem to remember or understand like i used to.

I am on a low carb diet and hoping to make enough this month for the gym.
This year even with money flow problems i finally have something positive to say:

I will not blame everything on being sick, i will not allow anything to remind me that i am sick, and i will keep praying for strength and hope.
i will try to make more time to study even though it takes me twice as long to understand. i will not lay down and die because i have so much to share with people even if they choose not to listen.
my only motivation is the thought that god has put me here on earth for a reason and my suffering is for a reason. i will fight so hard this next year for my b.a degree and not let my health hold me down.
If i continue down,and failing, i will not survive, i will become broke, and i wont be able to afford any treatments.
The point to my post is that reading everyones comments really helps and i thank you all for sharing.

it is because of every cancer survivor out there that I do have something positive to say. lol. i might have nothing including a thyroid but you all help to give me hope. please keep posting and keep fighting.

love,
stephanie

thepierre's picture
thepierre
Posts: 2
Joined: Dec 2011

Hello!

I wanted to add my 2 cents into this conversation. I had my thyroid out in September of 2011. I have been experiencing a lot of the same things; feeling depressed, tired, weight gain (70 pounds). It is a lot to deal with, but that is just the thing, it is deal-able. I would much rather have to deal with all of that rather than dealing with the alternative. (I lost my mom to pancreatic/liver cancer 7 years ago)

I have always been a 'silver lining' kind of guy, as I feel like almost everything in life has something positive that comes from it. Last year when I found out I was sick, I was in the middle of a '365 day project' where I was doing a video blog every day for an entire year... it was a good spring board for me to sort through my feelings and kind of get my head on straight.

I am not saying that journaling or anything like that will solve all your problems, but it may help organize your thoughts and get to the root of the issues.

The energy levels thing will get better and once you are able to be more active again, the weight will come back off. I always call the weight I gained back as "cancer weight" because I don't think of it as anything that I've done wrong to gain this weight.

I don't mean to be cliche, but keep your chin up, things will get better!

Pierre

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swoitowitz
Posts: 2
Joined: Feb 2013

Post TT: left vocal chord paralyzed & parathyroid failure. Some days really suck, but at least the cancer is gone! Took 1year for Doctors to figure out I had T-cancer, gained 80# b4 I had balance. Lost personal training/gym business I had owned operated for 10 years, but at least I was able to maintain my group exercise part of the business at new location. Breathing impaired makes life more difficult! Really frustrates me at times, burping & choking, disrupted sleep, confusion & hard to maintain train of thought when talking. My weight is FINALLY responding to exercise & disciplined eating. Sick of doctors telling me thyroid & parathyroid failure doesn't dramatically effect weight loss!!! ENT allows me to participate in my Rx treatment. Every menstral cycle was a hormonal nightmare b4 my syntlevels dosage was increased to 200. Primary doctor insisted my lab levels didn't indicate I needed increase, but I needed more, I was not a menstral drama queen b4 surgery! I have 5 sons & husband, n male dominated home does not handle drama queen mama very well. it was w embarrassing every month, totally out of control emotions, but increased dose solved problem & I am normal for 2 cycles now! I thought I wud b 100% after surgery, but almost 1year post surgery, I'm no where near 100%, but at least I've learned to adjust & adapt as best as I can. 

lessnerk
Posts: 1
Joined: Jun 2012

Hello!

I had my total throidectomy (at the age of 25) in 2002, followed by RAI. A year later they found a met in my mandible area during a routine scan...more RAI to oblate it.

As mean as this sounds, it's so nice to hear other people feel the same way. 10 years later and I am almost back to myself. My levels were always good, so the docs never understood what I was complaining about...foggy brain, lethargic, I definitely sleep a lot more and I have a lot less patience for the people around me. I just kept saying I don't feel "right" and this isn't "me"...I was placed on anti-depressants for several years. I am on the fence as to whether or not they helped. Until recently, I had a difficult time getting through the day without a nap, not a power nap, a 2 hour nap.

No one ever does mention the true effects. I didn't realize what a thyroid did until it was gone. Something that helped me with my body image, I began taking classes at the gym and then became a certified instructor in several formats. The lack of energy does affect my performance, but it holds me accountable for physical activity, released some of my psycho issues and definitely helped the body composition.

I guess it eventually gets better, but I definitely never fully made it back to "myself"...of course, I am also 10 years older. Plan and simple. It sucks.

amorriso
Posts: 186
Joined: Oct 2010

You said it. I dont think doctors realize how greatly the thyroid affects the normal functioning of the body - nor do they realize how this cancer affects our lives.

Among some of my goals is to change that thinking and get more research done. Havent a clue as to how - but its on my list.

I am barely at the one year mark - one doctor says all if fine - another isnt quite as sure. I have to do a lot of my own reseach to decide who is right...for now - I'm going with the one who says all is good.

I dont think as clearly anymore - I am forgetful, I'm clumsy and I know my muscles dont recover from exercise the same way. Trying out some vitamin combinations to see if anything helps.

I do feel better than i did before this all started - never realized how "sick' I was until recently. So I have to stay focused on that and go from there.

And of course getting older isnt helping.

renem1221
Posts: 6
Joined: May 2012

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.

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I've been on the Kidney board for several years...had stage IV Renal Cell Carcinoma in 2006 with kidney, 1/2 of liver, set of nodes & gall bladder removed. Recurrences in 2007 & 2008, again in single nodes that were surgically removed.

Last fall, regular CT caught the thyroid on the upper edge and there were nodes that shouldn't be there. Ultrasound, nuclear scan, and biopsy finally found them to be non-cancerous. But most recent US shows some growing and some shrinking. The biggie that's bothering me is the sensation of pressure and feeling like I'm constantly being choked. I see an ENT next week. And move on from there. But reading your posts makes me really want to think more than twice about a thyroidectomy in the future. I definitely don't need a weight gain.

I'll post next week after my appt.
donna_lee

missbrown's picture
missbrown
Posts: 2
Joined: Nov 2013

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. ;)

squirrel76
Posts: 1
Joined: Nov 2013

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

 

 

evamommyof4's picture
evamommyof4
Posts: 3
Joined: May 2013

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!!

Averycat9
Posts: 3
Joined: Apr 2013

I agree. I had a total thyroidectomy in January of this year (2013) - I frankly felt better before than I do now...trying to adjust Synthroid, etc.  Not sure about RAI.  The surgeon doesn't feel it's necessary, but I can't help thinking that everything possible should be done just to be sure.

 

Thanks and best wishes

ThyGirl40
Posts: 1
Joined: Aug 2012

Hi Kelli,

I'm sorry to hear (read) about your struggles, and they are common. I had my TT in December '09, and have gone through much of what you're going through. My Endo always told me "be patient" and I wanted to scream every time she told me that. I'm now feeling so much better, it really does take some of us a longer time to adjust to LWOT, as I call it. I want to also share that my father has ThyCa as well and he was diagnosed 25 years ago, had a TT as well. He is now in his 80's and still going strong. So this is a lifelong process for us, so be kind to yourself and find support where you can. There are lots of support groups and if you're not already on there - check out www.Thyca.org - tons of resources and groups with support.

I also want to say regarding those very well-intentioned people who tell us that Thyroind Cancer is the "best cancer to get," or the "easy cancer," or even "if you have to get cancer it's the one you want" don't realize how truly asinine those comments are. Nobody wants cancer, nobody gets to choose, and ThyCa is not a walk in the park by any means. When someone says that to me I always call them out on it. (that's just me)

Anyway, I'm glad you started therapy, that helps. By the way, I gained weight too and the only thing that worked for me (to lose it) was a low-carb diet. Seriously, nothing else worked for me but when i cut out the carbs, the weight just melted away.

Good luck to you and I hope you feel better. and if your Endo is not helping you, you can fire him/her and find one who will!

Victoria

Averycat9
Posts: 3
Joined: Apr 2013

Hi - you are so right about the "it's the best cancer to get" or "if you get cancer, this is the one to get" comments. I had a total thyroidectomy in January of this year (2013) and am still strugging with getting the right Synthroid dosage, etc.

 

I understand it will take time...and I'm still debating whether or not RAI is a must. the surgeon didn't seem to think so.

 

Thanks and best wishes,

 Susan

KnockKnockPenny
Posts: 1
Joined: Feb 2013

Hello,

I had my thyroid out 5 years ago after cancer was found and have recovered quite well. My frustration is a first world problem for sure. My doctor group wants to keep testing and checking my blood levels and looking for more growths. They won't issue my prescription unless I keep getting tested. I had a neck ultra sound last year and 2 years before that I had a dose of radioactive iodine with a body scan. No more growths were found.   My blood work always looks good and I feel great. 

I am so frustrated in having to jump through their hoops to get the meds I need to stay alive. I am willing to go in for a once a year check or if there is a problem but any more than that I want to refuse. 

Does anyone else have experience with this? I am thinking I may end up having to have an attorney help me get my medicine. 

Mary

doctortad
Posts: 15
Joined: Aug 2011

Hi,

 

I Had my thyroid removed 2 weeks ago. I had Graves Disease for nine and a half years and often went without my medications, though in my case it was usually my own forgetfullness. Based on that alone I resisted having my thyroid radiated. Then in January I was discovered to have Papillary cancer. After having it removed I learned that it had spread slightly. I have yet to get my new medications adjusted but am fearful that I will have the same problem of not taking my meds as before. Hearing of your problems is not heartening. Sorry: no advice.

 

Tad

mstein9922
Posts: 3
Joined: Mar 2013

I had my thyroid removed in 2008, after having been diagnosed with a small amount of cancer that could have been left and watched as it's supposed to be the best place to get cancer as it can be contained well. I made the determination that I didn't want to miss the time when it increased and risk it going into the lymph nodes or worse.

After the surgery my doctors decided that there was no additional treatment needed, that they had gotten it all. I am always a bit hesitant to believe the medical community with having two children with epilepsy I have had to do alot of proding to get things done. I went for a second opinion and was told the doctors had made the right decision. Ok, so I have to believe them now I guess.

First thing I noticed was no longer could I explain to brides about their dream weddings for the 15 to 20 minute pitch I was to do. I had to clear my throat frequently during this time and/or have my voice totally disappear during. (Doctor doesn't think there's anything wrong with that) Men! Probably just doesn't want to hear a woman lol I just explain to people what I had done and what could happen and they are fine. My boss took a little more convincing, he thought I was trying to get out of part of my job.

Energy level was not what it used to be. Ok, I was 50 when I had the surgery. Was I expecting my energy level to be that of a 30 year old? Learned to take advantage of the times it was good and made the best decision of my life, made an appointment with a nutriionist. We developed a number of supplements to take which really improved my energy level, my skin, nails (are yours brittle?) hair(don't find as much in the brush as I used to) and my overall health.

My weight has always been a problem and without a thyroid its more of a challenge BUT I researched foods to eat which are good for metabolism and have 6 small meals a day. I am proud to report that I weigh LESS today than I did prior to surgery.

Emotional/mental health...yes it was scary and depressing to have been diagnosed with cancer but uplifting to have survived it. There is always a positive in everything. It was easier for me to be appreciative and get over it because my mother was fighting the battle of her life (bladder cancer which spread to lungs and finally to brain) I had NO right to complain or feel sorry for myself when my own mother was dealing with pain, chemo, hair loss, the inability to care for her urostomy bag and a bunch more things. MY ROLE MODEL was handling her own cancer with grace, patience, and always a smile on her face.

I learned early in my children's lives(the two with epilpsy) and taught this to them as well "you may be dealing with something, whether it be small or large there is always someone out there somewhere that has it worse."

Search for answers and alternatives. The nutrionist is a good place. Switch to an endrocronlogist who prescribes thyroid replacement made from a REAL source (called ARMOUR) instead of a coal tar based product which most doctors prescribe. You will FEEL alot better :-)

AND get a non-digital thermometer(glass) for taking your temperature. Put the thermometer under your arm IMMEDIATELY upon waking up BEFORE you get up and leave it there for 10 minutes. Your basal temperature plays a role in things.  Read this http://www.wellnessresources.com/weight_tips/articles/body_temperature_and_thyroid_problems/   It can help with a sluggish thyroid and get rid of some of the problems you are experiencing.

There is life after the surgery and it is and will be good. The outcome is up to you!  :-)

Averycat9
Posts: 3
Joined: Apr 2013

Hi - I'm new to this. Just found this! I had a total thyroidectomy Janury 18, 2013.  I've been struggling with Synthroid and getting a correct dose ever since. I've read about Armour, but my physicians are not in favor. I had "clean margins" but just having read about Roger Ebert the film critic who had papillary thyroid cancer surgery in 2002... with "clean margins" of course it's at the back of my mind.  Still debating RAI. not sure what to do...

 

Thanks!

pabbers
Posts: 1
Joined: May 2013

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.

missbrown's picture
missbrown
Posts: 2
Joined: Nov 2013

hi

i can totally relate to all that you have said. boy has this been one roller coaster ride for me. i had a totol done in Feb. of this year and i have not felt like myself since. some days i seem fine and others i just want to lock myself away from the world. my boyfriend often wonders why i get upset so frequently and sometimes its difficult to explain especially when i miss my meds : ( its nice to know that im not alone in this. take care : )

candid
Posts: 16
Joined: Mar 2014

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

candid
Posts: 16
Joined: Mar 2014

1

Herstory11
Posts: 3
Joined: May 2013

First of all, to agree with Victoria and Susan, there are no good cancers and I hate it when doctors say this! It implies that it will be easy.  It may not be as painful and it probably won't kill you, but it is still a horrible experience. 

To renem1221 - There is a drug called Thyrogen that you can take while getting tested and you can stay on your meds. Ask your doc about it. 

So here's my story.  I am 61 and I've had ThyCa for 14 years. In 1999 I heard my voice change and I would start choking and gagging on nothing. A tumor was found on my thyroid and I had a complete Thyroidectomy. It was diagnosed as Papillary Carcinoma and one of my vocal cords was paralyzed.  Fortunately I could still talk.

I had scans every 6 months for a few years and then once a year until 2006.  All clear.

2010 I felt a lump in my neck.  The cancer has grown back and I have a "completion" Thyroidectomy.  I can barely speak and have speech therapy for a few months until I get my voice back (still minus one vocal cord).  Now it is Tall cell Papillary Carcinoma.

After 6 months I got a blast of radiation, 175 mCi.  No one tells me about any side effects and I don't feel them for a few months.  Then I experience severe pain in my salivary glands (first one side, then the other). I lose my sense of taste (which returns, but is still not right).  My body seems to be drying up - not enough saliva to eat properly, dry eyes, skin, hair and nails. I actually lose weight because eating is difficult.  I drink water all day.  I went to a Naturopath and did a cleanse diet, to try to flush out some of the drugs and crap in my body. It makes me feel better.  I start acupuncture treatments and am still going twice a month.

2013. I am back to scans every 6 months and now another tumor has shown up in a lymph gland under my jaw.  An "unusual" spot I am told. My doc wants to wait a few weeks and do another scan.  He does not want to do surgery and then find more cancer. This does not sound good. I have read that Tall Cells are more agressive and don't respond well to radiation. I will most likely have a third surgery in the future.

All I can say is be pro-active about your cancer. Write down symptoms and feelings. And questions for your doc. Sometimes you think they are not connected with the cancer but they are. Find someone to confide in who will be positive and boost your spirits. Or write to all of us here. You can live with this cancer once you get past the fear and anxiety.

Peace and Love,  Lorraine

rranduxar's picture
rranduxar
Posts: 1
Joined: Aug 2013

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

dlygoblue
Posts: 28
Joined: Mar 2012

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 2nd 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's picture
Baldy
Posts: 225
Joined: Mar 2011

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

Deana1961's picture
Deana1961
Posts: 2
Joined: Aug 2013

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.

Deana1961's picture
Deana1961
Posts: 2
Joined: Aug 2013

Overall its your chocie on what to do but please talk to your family and see how they all feel and most of all trust in your feelings as well. Its scarey when they say we have cancer but you can survive it. Its not a easy road its a long road of meds. and doc. app. My girls were young when I got cancer I do not beleive in chemo but when doc said radation I went for it. Trust your feelings and god bless you.

Deana

Krenee
Posts: 1
Joined: Oct 2013

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

galinbakersfield
Posts: 23
Joined: Apr 2013

I too have had the problem with disability. The problem I have is that I have been "battling" this "easy" cancer since 2008. I have applied for ss 3 times and now, I have finally made it the farthest I have ever made it. I say keep trying, but unless you have complications (I have them ALL) then they are going to keep denying you. Best of luck. 

kiki81
Posts: 2
Joined: Jun 2014

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. :)

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Kiki,

Don't worry about the RAI, I didn't have many side effects at all.  I did drink TONS of water after they gave me the I-131 dose.  If I remember correctly, I did this for three days after they gave it to me.  All the water helped wash the I-131 that my thyroid didn't absorb out of my system.  I normally drink two 10 oz glasses of water with every meal anyway, for those three days I'd drink a 10 oz glass of water every couple of hours too.  There were a couple of times when I wasn't able to drink water as often and I got a mild head ache and an odd taste in my mouth.  I had a small dose, 73 mCi, which probably helped keep the side effects to a minimum.  Don't worry about drinking alot of water keeping the I-131 from doing what it's supposed to do.  My percent uptake was good and my one year scan was also good.

I'm guessing you have the Papillary kind?  If so, you have a good chance of being cured.  Papillary thyroid cancer is one of the few curable cancers even when not caught early.

You sound like you're hypothyroidal now, they're probably waiting until after your RAI treatment to do blood work.  My understanding is they usually match your levo dose to your weight.  For me, 160 to 165 pounds, I was originally on 175mg and am now on 150mg since my free T4 was border line high the last time it was checked.  Later on, if your blood work says you're OK but you're still having symptoms, DON'T let the doctor shrug it off.  Insist he listens to your symptoms!  If he won't, find a doctor who will.

Hope all goes well!

Alan

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