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Normal Life after a total benign thyroidectomy?
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Normal Life after a total benign thyroidectomy?

I'm absolutely terrified!  I was very cool with my decision to have my entire thyroid removed as I have a 5.5 centimeter non-malignant nodule on the right side and three 1.3 centermeter non-malignant nodules on the left.  I was resigned to the fact that I could live without a thyroid with the proper hormone replacement.  I made the mistake of telling a very over dramatic friend of mine and she of course informed me that  EVERYONE she knew that ever had a total thyroidectomy got cancer soon after!  I keep reading about people with these weird symptoms of chronic fatigue, massive weight gain, massive weight loss, its too much!  Has anyone had a total thyroidectomy and lead a normal life afterwards?  Please let me know.
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Avatar f tn
I posted almost the exact same question three months ago.  I had a TT on April 12 for a multinodular goiter (no Graves, Hashimoto's or other issues).  9 weeks later it's as if the surgery never happened.  My throat feels a little funny, the scar hasn't faded, and that's about it.  No weight gain (or loss, boo hoo), no hair loss, no cancer.  

On a side note, how do you "get cancer" from a thyroidectomy?  Sheesh!  "Everyone" your friend knows probably already had cancer, but of course, not all of us running around with no thyroid had or have cancer.  Good grief!

For what it's worth, my sister had her thyroid removed 7 years ago.  She has never had any problems either.  

Good luck!

Kat
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Avatar f tn
Yes. I had one done back in 1993 (23yrs old). Still work, a lead a NORMAL life...
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219241 tn?1413541365
Unfortunately like any forum dedicated to disease, you may not find people who have success stories posting often. Totie above is an exception. Many here who post here are like you, then after time move on, as they get better.
  There are horror stories, for sure, but they aren't the norm.

It is a fact; nothing can ever perform better than the original organ. No medication is going to be the magic wand. Only by learning about your own body and knowing what all the medical terms mean, not focusing too heavily on symptoms,(unless of course, they are very obvious and concern you) and staying positive will you succeed through the thyroidectomy.

I never got cancer immediately after my surgery, I never gained weight, lost weight in great bounds, I never had chronic fatigue.....BUT I have to say, for most of the people without a thyroid it IS a balancing act. I can't lie and say it was all roses and sunshine for me, it wasn't. It still isn't. But that is just me, I have other issues that are interfering with my recovery. My sister-in-law had hers out pretty much at the same time as I did. She has no problems what so ever. Even had a baby with no issues! It really is an individual thing. You are doing the right thing and asking, educating yourself is the best way of appeasing your mind!
  Oh and by the way....don't listen to friends who had friends who knew someone who had their thyroid out...most people love drama and honestly we could all quote horror stories on any illness! You never hear someone say, 'Oh, I know someone who went to hospital and bounced right out of there 2 hours after having a herniated appendectomy followed by a lobotomy!' LOL!
  
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Avatar f tn
I had RAI then total TT (2008) and am back working and loving every minute of it.
Not everyone has 'horror stories' and there are many success stories.
Redhead is right though about some of the success stories 'moving on'.

I stayed....to help others who are just beginning the journey of thyroid issues.
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Avatar f tn
Had mine 3 years ago for cancer followed by RAI and I'm fine. It took awhile to get adjusted to the meds but all and all I would say I qualify as a success story!
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929504 tn?1332589534
I had a TT in Dec 2010...I am still on the road to a balance life however it's getting better slowly but surely...I too had benign nodules that were large, it can be challenging when trying to figure out "what the heck is happening to my body" but once you educate yourself on the symptoms of being "hypo" and make sure that you stay on top of them and be very persistent with you endo...you will be fine. I still have extreme exhaustion, however, i'm not leveled out yet but i am active and work out daily to control my weight and it is helping me alot. Stay positive and take one day at a time.
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Avatar f tn
That makes me feel so much better.  Like I said before I was cool with my decision when I left the doctor's office until everyone else started "talking".  I figured the aftermath of the hormones would be a rollercoaster ride at first but get better later.  I'm just going to forge ahead and do what needs to be done.  I work out every day anyway so I was never fearful of gaining weight. My family however is very fearful of my upcoming mood swings! :)  I'm looking forward to them actually!  Anyway, thanks to everyone for your reassurance. I'll check back after surgery to let you know how all goes.
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393685 tn?1425816122
Well it sounds like many still here posting are successful and others are finding it very soon. I am right there with you. I may not of had the knife removal but RAI took my gland down to a pair of limp panty-hose hanging wet on a coat hanger - ( nothing but a string left to function)

and I am tip-top shape now after a lang haul of finding my right dose.
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1263014 tn?1318036297
I had my TT just 22 days ago 6/1/10......I feel pretty good.  The only complication I am dealing with right now is my voice.  Most people I have talked to say give it five weeks to recover.  Other than that I notice a big difference getting my diseased Hashimotos gland out of my body as synthetic hormones feel much better.  I had horrible joint pain prior to surgery that was gone the minute I woke up and has not returned.  I do have some tingling at times from low calcium but I have had better luck with Caltrate D Plus chewables 600mg over the Tums.  I take two twice daily.  I am still resting at home and have not gone back to work.  Give it time and rest, but you wont feel that bad.  Oh and no one has mentioned the surgery even though where it is, is really not that painful.  No more than Tylenol, if that.  I had some pain meds in recovery initially and two tylenol in the hospital.  I wish you the best of luck, but please don't listen to all the horror stories.  Any surgery has its risks, but this one really isnt that bad.  I was home from the hospital the next day.  Best wishes, Kim
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Avatar f tn
I posted almost the exact same question three months ago.  I had a TT on April 12 for a multinodular goiter (no Graves, Hashimoto's or other issues).  9 weeks later it's as if the surgery never happened.  My throat feels a little funny, the scar hasn't faded, and that's about it.  No weight gain (or loss, boo hoo), no hair loss, no cancer.  

On a side note, how do you "get cancer" from a thyroidectomy?  Sheesh!  "Everyone" your friend knows probably already had cancer, but of course, not all of us running around with no thyroid had or have cancer.  Good grief!

For what it's worth, my sister had her thyroid removed 7 years ago.  She has never had any problems either.  

Good luck!

Kat
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Avatar m tn
I was looking for forums found this one, I had total tr just three days ago, but had a couple minor complications during surgery so it's a little more painful recovery, but doing well, doc had to dig around some old very large scar tissue from a previous cspine surgery said whole area was almost closed off between the "grapefruit" on the thyroid and the scar tissue had hard time getting around vocal chord to avoid damage surgery took 3 and a half not two hours,but I woke up with a hoarse but useable voice so happy there, pain getting better, but more localized now, I can feel where he had to "dig" things out, already seeing improvement in some other areas though, getting more air when i sleep, I'm guess my sleep apnea is not as bad,can eat most real foods in small portions, my biggest irritation seems to be keeping things from rubbing on the incision which is about 3 inches, so here's hoping it continues to get better , felt ok but pretty sore first two days, tired today.. diaphram sore, and breast bone area still pretty bruised, but otherwise ok... I wish you all luck and would love to come back by and see any updates... thanks for the info everyone posted it was a great help.
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Avatar f tn
Hi Kimmy! Am happy for you and continue to wish you well.  i
I just like to ask what made you decide for Thyroidectomy? Thanks, botging22
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Avatar f tn
I had my TT surgery one year ago and I feel fine. I was diagnosed with a severe form of Graves’s disease but no cancer. I elected to have the surgery over the Iodine due to my thyroid growing larger by the day and the fact that iodine treatment can cause fertility issues. I do not know how long I had the disease before I was diagnosed. I am currently on Levothroxine (levothyroxine) .150 mg. Synthroid did not work for me for some reason. It gave me symptoms of fatigue, dizziness, light headed, foggy ect. I basically felt like I had a hangover without the barfing. There are days that I forget to take my medication and I can definitely feel it the next day when my hangover symptoms come back.

Since I had such a positive experience from the surgery I do recommend it as an option to others.  Before my surgery I was barely able to get out of bed. I could not stand up long enough to even take a shower. When I was resting my heart was beating so fast it was as if I had just run a marathon. If I did any kind of activity (cooking, cleaning, and taking out the trash) I would break into a cold sweat that would saturate my clothes literally. I was all messed up. Now as long as I take my meds every day I feel 90% normal. I still have minor fatigue but I really cannot complain.

To all who are considering going through the surgery my best advice would weigh your pros to the risks. Yes if you can have complications. Surgery can leave your vocal cords destroyed and your parathyroid as well. Yes, it can take years for you to try different medications and dosage to find the right balance for you. To me it was worth it because at least now I can get out of bed. I also chose the best surgeon in my state (still paying him off though :-).
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Avatar m tn
I just had a TT on June 4, 2013 (20 days ago).  I feel better than ever.  I had 2 large growths on my thyroid, and they ended up being benign.  I was back to work after a week (stayed in the hospital for 3 nights because I was draining a lot of blood).  Never experienced tingling.  2 weeks after surgery, I was back in the gym.  I have not gained any weight, actually lost 1.5 lbs.  not experiencing any hyper or hypo symptoms, no hair loss, no depression, no fatigue, etc.
I too was terrified after hearing horror stories on line, but like many things in life, you hear more about the bad than the good.
I do have a visible scar, but I will take that over a goiter any day.  I actually don't mind my scar....it gives me character.

As for my background, I am 38 years old, have 2 young kids, have always lived an active lifestyle, am of medium build, and never had any health issues before this.  Also, my Dad had to have his thyroid removed, so it must have been heredity.
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Avatar m tn
I had left thyroid taking out in 2005,do to cancer,did fine without it,they found 2 more nodules on right thyroid,had that removed 2011 no cancer,now 6 months ago blood count is 0.10,still low my Dr.is trying to get my medicine right,my voice is getting horseness now,hard to swallow sometimes,thats the symptoms am having now,anyone with these symptoms,please let me know thanks
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Avatar m tn
I had left thyroid taking out in 2005,do to cancer,did fine without it,they found 2 more nodules on right thyroid,had that removed 2011 no cancer,now 6 months ago blood count is 0.10,still low my Dr.is trying to get my medicine right,my voice is getting horseness now,hard to swallow sometimes,thats the symptoms am having now,anyone with these symptoms,please let me know thanks
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Avatar f tn
You give me hope that there can be a normal life after PT or even TT. Hope and pray mine are benign when they open me up next week and wont experience hypothyrodism given the right dose of medication. I dread weight gain the most.
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Avatar f tn
I am sitting in the hospital now just had tt removed plus three parathyroids removed . Not much pain I'm just wondering before my thyroid condition hasimotos 9years ago ibweighed 120 lbs since the hashimotos I've not been able to get below 200 now that the hashimotos is gone does anyone knowing I'll be able to lose weight quickly as long as I take my synthroid im not sure the dose he will put me on yet but I was on 400mcg a day before surgery I'm just desperate to lose someone this weight..
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Avatar f tn
I had my right thyroid taken out on August 23, 2013, I did not have cancer. Had problems with my voice being hoarse for almost 7 weeks. My real problem I am having is I have a hard mass behind my scar on my neck that feels like someone is pressing on my throat or I have a lump in my throat. I did talk to the doctor about this all he says is that it takes time to heal. Well it is a very uncomfortable feeling and wondered if there is anyone else having this same issue.  
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Avatar f tn
I just had a left lobectomy for a nodule (turned out benign adenoma, thankfully). I am 13 days post-op and looking for encouragement as the original poster. I see so much negativity on the internet, but have three friends that had tt  (two of them 30 years ago) and they are completely fine. I never even knew she had a thyroid history. Their scars are invisible, they take Syntroid and are bundles of energy, as well as being major community leaders. You would think I wold look at that encouragement.

I guess because I am two weeks out, I am still healing and even though I woke-up with a full voice, speaking loudly and in high tones, and sining do not work well right now. I am probably being too hard on myself and need time to heal.

I am not concerned so much about meds, because the surgeon believes my other half will pick up the work load and do fine. He has left even tiny amounts for people that have worked for them, so he feels an entire half should work. I pray so!

My main question is about recovery. I am looking for those who have fully recovered from surgery and how long it takes that throat tightness/lump in throat to go away, and the voice to come back fully. My surgeon says 6-12 weeks. I have walked every day since the day after surgery, take loads of vitamins, I am driving fine, and have full motion of my neck in all directions, but it feels a little tight when tight turning to the surgery side...although I can do it. My scar still has some swelling underneath it, but it will look good when healed, I believe, because the only redness I seem to have right now is some bruising. I also have extreme anxiety about this which is making me depressed.

Hoping for words of encouragement from people who have healed well and gone back to feeling normal and leading a normal life...post-surgery...I understand it took time for meds, but I mean from surgery.

Thank you for letting me vent. I am the mother of two very busy children and I have always lead a very busy, chaotic life, and I want it all back! I appreciate encouragement and then when I heal I can encourage others :)
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Avatar f tn
Hi Roberts1264,

I have hashimoto's and got recently diagnosed. Since you had your surgery a year back, I wanted to know how your life has been post surgery. I am dying to hear some success stories, and hoping that you have one to tell.

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Avatar m tn
I had my thyroid removed around 18 years ago.  You will struggle finding the correct amount of medication.  Get a good thyroid doctor.  Some general doctors only go by blood tests (I had that problem) and anything can throw off a thyroid test.  Also I fast before my tests, try that.  Don't eat or drink coffee for a good hour after you take your pill in the morning.   Am I going to sit on here and say it easy...maybe for some, but most no.  make sure you take Vit d-3 and iron everyday.  Hope this helps.
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Avatar n tn
I am wondering if anyone had nodules and decided against surgery?  In the tons of research I have done, I have read a couple article on the epidemic of thyroidectomies.  I can understand if you have Graves, or Hashimotos or cancer for sure.  I have multiple nodules on both lobes, two are 1cm.  Biospy came by with one benign and one inconclusive. Dr wants to take my thyroid out, stating there is a 10 percent chance of cancer. I have refused. I don't go along with the when in doubt cut it out method.  In a years time, the nodules have not gotten any larger.  I have chosen to change my diet and monitor my nodules.  I am listening to my own instincts for a change.  Other than the nodules, I have no other issues.  All levels are normal and everything is working fine. I know surgery is a personal decision for everyone.  Just wondering if there is anyone else out there who elected not to have surgey.
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Avatar n tn
I am totally sick to my stomach with worry ever since reading patients problems after thyroidectomies.  I was ok before reading some of the horror stories.  had several opinions about whether I needed this or not and all agree I do.  I have a atypical biopsy with follicular cells, but can not tell for sure if cancer or not.  Hyperthyroid with nodules and a couple have started to grow a lot which is why they biopsied them.  Anyway I was also told that the surgery would be best rather then worry about nodules , now I am thinking I would rather worry about them or know for sure what is up with them then do the surgery.  I was however happy to finally read one good comment on how it worked well and went well for them.
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Avatar m tn
I had hashimotos for years with sx of hypothyroidism which became much worse past 3 years.  Extreme fatigue, loss deep tendon reflexes, low basal metabolic rate (measured in office by breathing into machine), constant ears ringing, pain in bones in feet, virtually every bone and muscle ached, brain fog, intolerant to heat...  thyroid antibodies only 58, (later down to 15 prior to TT)  Ultrasound discovered 2 cm nodule and had bx which showed hashimotos with hurthle cells.  I was told by PCP that I did not have hashis (bc antibodies not high enough) also ENDO told me same. So I went to MANY doctors trying to determine why I felt so bad and no one would treat since thyroid labs always normal range.  All I can figure is that since I had hashis for so long, antibodies eventually burned out after thyroid destroyed.  I cannot explain normal labs, that part has me stumped.  I work with a nurse who had same sx, normal labs and hashis.  She had a total thyroidectomy (TT) and said she felt great within a week.  I went to see her surgeon and he agreed that hashis patients do tend to feel better after ds thyroid removed.  Now to the surgery...I just had the TT 6 days ago.  The surgery lasted over 3 hours.  I will say the first 2-3 days were very rough.  I had tachycardia issues and tingling and twitching.  I felt horrible and frankly quite frightened even though I am a nurse of 30 years.  I kept the nurses and doctors hopping, calling on the call lite constantly wanting something else done.  They discovered my phosphorous was low and once that was replaced, the twitching stopped.  I had been taking calcium already and calcium levels normal.  They thought I was just being anxious and that it was my norm to freak out like that, but I knew something wasn't right.  Once the levels got straightened out, no more tach issues or muscle twitches.  I was supposed to come home next day but spent 2 nites.  I had surgery on a friday, which meant MY doctor was not available all weekend and I had to settle for some other doctor who never said more than 10 words to me on sat/sun total.  The surgery residents were the ones that helped over the weekend.  I will say my faith has gotten me this far.  I prayed ALOT and still do and firmly believe God will completely heal my body. I told my husband I did not want to watch any news, or hear any bad news or be stressed at all, as I felt very emotionally weak and vunerable which is not like me.  As my husband told the doctors when they asked if I was just being overly anxious, he informed them that I was always the rock and nothing ever phased me.  But I cannot accept that title, GOD is my ROCK.  I recite Phillipians 4:6-13 and Isaiah 40:30-31 on a regular basis and I understand I have an enemy who would not like for me to regain my strength so that I can resume the ministry calling in my life.  I do not mean to ramble, but I focused on the positives.  The pain was minimal 3-4 on scale of 10, I had no bleeding or breathing complications.  I REFUSED to feel hopeless. I will say the pain in my feet bones etc, is completely gone and I am getting stronger everyday.  I am going to be patient and have 100% confidence in my Lord.  Not in me, but in Him.  I am still very weak, but I trust it will get better over time.  I do not see my doctor for 2 weeks and I will have alot of questions.  My iodine is low, so I may need T3 added, we will see.  He did not want to layer meds at first.  He wanted to see how I did on plain T4.  I insisted on Synthroid versus generic although the resident assured me there was NO difference.  I am on 137 mcg daily.  I will try to update again later.  Overall I am very optimistic and I give all the glory to HIM! I have been coughing ALOT, throat tickle from sinus drainage and intubation I suppose.  My throat/voice seems fine. I feared all the coughing would cause incision problems so I took clariten D...that was a mistake bc my HR went to 120;s and made me feel uncomfortable so I rested and had my son do reflexology on my arms and hands while I prayed.  HR went down to 95.  I am taking caltrate with D  twice daily and my regular vitamins.  I need to get off simple carbs for sure, I know that will help.  I weigh 205 and am 5'6 .  My weight has been stable for last 3 years, I can lose weight when I eat right, so I am hoping I still can.  I am 54 years old and post menopausal. If you have questions or comments feel free to email me at ***@**** or check website EternalLifeSupportGroup.  I have taken one month off from work so just taking it slow and thankful for every answered prayer!
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Avatar m tn
Wow you have really been through a tough time.  Glad you are seeing the light at the end of the tunnel.  I just wanted to point out that you need to make sure that they always test you for both Free T4 and Free T3 every time you go for tests.  Many members say that Free T4 needs to be at the middle of its range, at minimum, and Free T3 in the upper third of its range, as needed to relieve symptoms.  If meds adequate to relieve symptoms suppresses your TSH, don't believe the doctor if he says you have become hyper, unless you do have hyper symptoms, due to excessive levels of FT4 and FT3.  Suppression of TSH occurs most of the time when taking adequate doses of thyroid med.  In fact TSH is basically a useless test when taking thyroid med like you are.  

In addition, I just wanted to mention that even if your FT4 and FT3 levels are optimal, there are other factors that can cause symptoms.  Hypo patients frequently do not produce enough stomach acid, so there can be poor absorption of vitamins and nutrients.  Resultant low Vitamin D, B12 and ferritin can cause symptoms that mimic hypothyroidism.  Low D and ferritin can adversely affect metabolism of thyroid med.  D should be about 55-60, B12 in the very upper end of its range, and ferritin should be about 70 minimum.  Another factor to investigate, if you should not achieve symptom relief is cortisol.  Cortisol needs to be in the upper quarter of its range.  If it is too high it is an antagonist to thyroid hormone.  And last, if conditions are such that the body produces an excess of Reverse T3, which is a mirror image molecule of T3, but is biologically inactive, that can interfere with Free T3 and also cause symptoms.  

So just in case we didn't hear from you again, I just wanted to make sure you are aware that treating hypothyroidism can be a lot more than just prescribing T4 medication.   If we can help in any way please let us know.  
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Avatar f tn
What did you end up doing? Ihave pre cancerous follicular cells also.  2.8 at largest point (1 inch)  Ive alsoread horror stories and dont know what to do.  
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Avatar f tn
Male 34. I had a TT 14 months ago. Had issues getting the hormones right for an entire year. I blame the doctors for that. It was rough but manageable. I am now taking name brand synthroid (t4) and also liothyronine (t3) and my numbers have been good for 6 weeks. I feel way better now. Maybe not quite back to normal but way better. The doctors are very frustrating and act like its no big deal to be on medication the rest of your life getting blood work every 3 months or so. They also act like the medication is cheaper than it is. It has been frustrating but I'm accepting it now and startling to feel basically normal again. You'll be fine if you don't blame all of your problems on your thyroid and start letting them snowball. Eat right, drink less (or not at all anymore in my case) and just try to live a generally healthy and positive life and you will be fine. I think the horror stories me stay come from people who just focus on it to much and allow it to rule their lives. They usually hav a bunch of other medical problems to scape goat their issues on as well.
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Avatar m tn
Male 45.  I just had my thyroid removed 5 weeks ago because of Hashimoto's and nodules.  I am still getting normalized on my meds but I am having some good days which I didn't happen at all before. I know there is a light at the end of the tunnel.  Like Csj above I eat healthy and completely cut out alcohol.  I have always exercised but it had become tough to do so the last few years as my symptoms got worse.  Fatigue is by far the worst of the symptoms.  
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Avatar m tn
When you say getting normalized on my meds, how are they evaluating your status and how much medication you need?  Is it based on your TSH level, or symptoms?
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1266955 tn?1270221964
Great point, redheadaussie! I am waiting to have my own thyroidectomy in a couple of weeks, and I have a positive attitude about it. I have had 7 surgeries for osteoarthritis in the last few years, and I remember reading the horror stories about joint implants that didn't go well. I'm doing great with 2 knees and 1 shoulder implant! So I'll do well with thyroid removal, too!
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Avatar f tn
Hello,
I understand! I had a TT  09/15 and like you was fine with the idea of it. Then after surgery had a few issues (minor) adjusting to the meds. Then started freaking myself out thinking about having to take the meds forever!...Here we are a few months later and all is well. I kinda laugh about it now thinking back about how worked up I made myself. Yes, you have to take your meds forever! But you have to eat forever too ;) Best of luck! Everthing will be fine.
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Avatar f tn
Thanks for the positivity because all the negitve stuff really scares me. Like I don't know how I should feel after having my TT last month.
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Avatar f tn
Wow just like me well except I only have a partial knee replacement in June last year and the TT last month. Good luck
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Avatar m tn
It is based on TSH, FT3 and FT4 as well as how I feel.  I am now just over two months post TT and I have had a bit of a set back but I know it will get better. I just had my blood test last week and I am still waiting on the results.
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Avatar f tn
Hi, I am right now debating this as im due for surgery in 3 weeks, only have left side as other side removed due to large goiter 4 years ago, now i have 3 nodules on remaining half and fna came back as susicious for papillary carcinoma...
I am a healthy person with 3 kids and dnt suffer with any health issues or thyroid issues and it just gets to me that a functioning thyroid in a healthy body might need to be removed because they want to check it for cancer. ahhh, i am curious are you still in same position? still surgery free??
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