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Life after Thyroidectomy
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May 13, 2012 - 10:50 pm
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 |
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!
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.
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.
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
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
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.
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.
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.
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.
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
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
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
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
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
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
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! :-)
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!