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total thyroidectomy side effects (Page 1)

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Hi,

In December 2006 (at the age of 20)I was diagnosed with Papillary Thyroid Cancer. I had 2 large growths on the right lobe of the thyroid gland. A month later I had my entire thyroid removed.

A few months after surgery I lost 15-20 pounds. Since then, the weight is back. I'm also still struggling with depression, inability to concentrate, fatigue, slurred speech, confusion, etc.

Before the diagnosis, I'd get sharp chest pains (under my sternum and from shoulder to shoulder) as well as sharp pains in my back (between my shoulder blades.) I was wondering if the chest pains were related, because I am having them more frequently. I'm worried that the cancer is back. They also removed lymph-nodes, 5 of the 8 they removed had cancer in them.

I don't know if I need my Synthroid dosage upped, or what. I have an appointment Friday, but I wanted to know if you all have had similar problems after getting your thyroid removed. I'm at my wits end! I am tired of being tired, tired of being overweight, and tired of the mood swings. My lack of concentration is effecting my career. No matter how much I exercise or how well I eat, I can't seem to lose weight. Any tips?!

Thank you for your help.
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First Helper User Profile LittleBigChef
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replied September 12th, 2008
Extremely eHealthy
Hypothyroidism is an expected sequela of total thyroidectomy.
Although, you are taking Synthroid, you are still experiencing symptoms of hypothyroidism (depression, inability to concentrate, fatigue, slurred speech, confusion, weight gain and difficulty losing some, etc.)
You should talk with your doctor about changing the dosage of Synthroid or switching on other brand of hormone or getting combination of T4 and T3 hormones.

How often do you visit your endocrinologist?
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replied January 10th, 2009
Hypothyroidism
I had a thyroidectomy over a year ago now, Oct. 23, 2007. I still am trying to get my dosage right. I've been bounced around on different dosages of synthroid. Now I'm back to 100mg. See how that works. I'm feeling weak at times and having a hard time concentrating. I'm going to school right now, so it's hard. It's a long process for some and a long road. So hang in there and I hope you feel better soon.
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replied April 20th, 2012
I had my thyroid and parathyroid taken out last year. They were riddled with large goiters. I knew something was wrong months before the goiters were found. I was always tired, depressed, and gained 40 lbs. After I had both removed, it took 3 months to get my synthroid dosage correct. I'm now taking 150mg a day. The weigh is coming off slowly, but I definitely feel 100% better. The key is to find a good endocrinologist that listens to you and is willing to test and retest your levels. He discovered that I had very high bilrubin levels in my blood and also diagnosed me with a genetic disorder called Gilbert's syndrome.
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replied August 13th, 2012
Have you checked you Calcium and D? They might explain some of the symptoms you are having.
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replied February 5th, 2009
When do you start to feel tired?
I was diagnosed with papillary thyroid cancer (27yo), had my total thyroidectomy a little over a week ago (Jan. 27, 2009), and my doctor said that I would begin experiencing signs of hypothyroidism in about 3-5 days. It has been 9 days. Besides having a harder time remembering things everything is normal. I have really watched what I've been eating and have lost 2lbs. I'm just a little anxious for everything to start hitting like the tiredness and weight gain, because I get married in 3 months (hopefully the dress will still fit Smile
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replied January 8th, 2013
thyroidectomy for ca
I just had my thyroid removed due to cancer. I was full of energy and did great for about a month & 1 1/2 then it was like the freight train brakes just stopped that train like is was nothing. I should have been made aware of what symptoms to watch for then I would have known to get my labs checked quicker. So the doc increased my med and we will go from there. Yes you may get tired but when you do feel that energy zap call the doc do not hesitate. I have been drained muscle and bone pain fatigue. I feel like I have confusion memory loss wow it is strange. I know I can fall into the feel sorry for me party & did so just be patient & make sure your significant other understands it is not you. lol but to just b supportive this to shall pass and you will be functioning fine with the right meds and levels
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replied January 8th, 2013
thyroidectomy for ca
I just had my thyroid removed due to cancer. I was full of energy and did great for about a month & 1 1/2 then it was like the freight train brakes just stopped that train like is was nothing. I should have been made aware of what symptoms to watch for then I would have known to get my labs checked quicker. So the doc increased my med and we will go from there. Yes you may get tired but when you do feel that energy zap call the doc do not hesitate. I have been drained muscle and bone pain fatigue. I feel like I have confusion memory loss wow it is strange. I know I can fall into the feel sorry for me party & did so just be patient & make sure your significant other understands it is not you. lol but to just b supportive this to shall pass and you will be functioning fine with the right meds and levels
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replied April 21st, 2009
Extremely eHealthy
Agree with MandMs.
I also had my entire thyroid removed because of cancer. It took more than a year to get my dosage right. Make sure you get regular blood tests and have your doctor adjust your medication. I personally found that a combination of T3 and T4 worked best for me (although the research is inconclusive).

Symptoms of both hypo and hyperthyroidism can be really difficult.

For Strickler: You shouldn't gain much weight in a short amount of time. Your doctor did give you thyroid medication, right? If so, you may not have any problem at all.
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replied February 21st, 2012
alternative cure?
it would be interesting to hear if somebody got over his thyroid cancer in a way OTHER than thyroidectomy. I was diagnosed last week with papillary thyroid carcinoma and i am so Against removing my gland in order to cure it! Any hopes???
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replied February 22nd, 2012
Extremely eHealthy
I can understand that this all came on very suddenly and it's a big decision. Is it that you are against surgery or that you don't want to take a pill every day? What is the exact reason you are against the surgery?

Surgery is the first step in treating virtually all thyroid cancer that they feel is treatable. Luckily, papillary thyroid cancer has a very high cure rate with surgery and radioactive iodine (RAI). External radiation is only used in cases where surgery is not an option and it doesn't work as well. I would also say that I've seen people go through conventional external radiation for other cancers and I would personally take the thyroidectomy and RAI any day of the week.

Some doctors will do only a partial thyroidectomy (remove only half) if the cancer is small (usually less than 1 cm, I think) and confined to one lobe. You probably won't be totally dependent on thyroid hormone pills, but your doctor may still want you to take them to suppress future cancer growth, at least for the next 5-10 years. Again, it depends on the doctor. Also, if you only have half removed, RAI is not an option because that would damage the remaining lobe.

If you want more information on papillary thyroid cancer and it's treatment, there are a lot of great resources online now from reputable medical websites: thyroid.org, Endocrine Web, Medline Plus, New York Thyroid Center, and the Mayo Clinic. Just be wary of non-reputable websites or getting information over-load. And ask your doctor lots of questions and make sure they're answered. You should understand what is going on and why he or she is recommending that course of treatment.

I hope this answers your question, although I may not have given you the answer you wanted. If you have more questions, please feel free to re-post. Best of luck.
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replied February 23rd, 2012
Hello and thank you very much for your reply.
It seems from your words that you are well informed and comfortable with this subject. Actually i am not against on the surgery to fix something but most against on the removal of a body organ and also on the fact that i will have to depend on medicines for the rest of my life. I am sure, as every other drug , the thyroxine pills will be announced as carcinogenic one day and something else will replace them until they will be replaced also by something else and so on and so on.
I strongly believe and always believed that the only way to cure any disease is to first to heal the body from inside and also to remove the cause of the problem. By removing an organ i don't think we correct any cause or any disease. we just remove the symptoms and if we are lucky enough it doesn't come back again.

I realize of course that sometimes we dont have the option to wait if the problem has already made the damage on an organ but i strongly believe that if that is not the case we should try everything to "fix" our body before removing parts from it.

I don't want to influence anybody with my words, but i think i will take my chances and search for other options than the thyroidectomy.

I have not decided yet how will i proceed and i hope i will do the right thing at the end but i thank you so much for taking the time to answer this post. They are sure a great help.
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replied February 25th, 2012
Extremely eHealthy
I understand your worries, but I have a couple of clarifications.

1. Your thyroid is not an organ, it's a gland. I know it doesn't sound like a huge difference, but it is. It's not your heart or your lungs, it's your thyroid.

2. You're not going to *get* cancer from the thyroid hormone pills. Hon, you *have* cancer now. Yes, it's a "good" cancer, a curable cancer, even maybe an "easy" cancer, but still...cancer.

3. People have been on these pills for...decades and before that they were using dessicated animal thyroids to supplement (those pills are still available, although I don't personally recommend them because they aren't balanced the same as human thyroid hormones). This stuff has been tested and if there were seriously bad side-effects, unnatural side-effects, they would know by now. Also, not all drugs inevitably are discovered to be bad and not all are replaced with something else. Some are necessary to life. There are many people who still have their thyroids who depend on these drugs, as well.

4. This is has been the standard of treatment for thyroid cancer for more than 50 years (yes, RAI has been around that long). No other cancer treatment has this kind of track-record. Almost no other medical treatment has that kind of track-record. Maybe you can find some long-term studies that would put your mind at ease.

I'm not trying to influence you're choice, but I'm not sure that your concerns are...informed. I encourage you to read up on this stuff, ask your doctor questions, and fully understand the consequences of not proceeding with treatment. Even get a second or third opinion if it would make you feel better. Also, not all "natural" remedies are harmless. So be wary of what you decide to do and who is selling it to you.

I wish you the best and I hope everything works out for you. Again, if you have more questions, please feel free to re-post.
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Users who thank MyrahU for this post: georgecyprus 

replied February 25th, 2012
Thank you for your time and answer . I still am agains thyroidectomy, I will keep you posted and i hope i will be one of the exeptions...
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replied August 13th, 2012
Natural treatment
Have you looked into Gerson Therapy? I started juicing after I had tumors. Three months later the MRI came back they we're gone. You have to continue a whole foods/ organic lifestyle to prevent them from coming back, to keep a healthy alkaline/ph balance so no tumors and cysts can grow. Important note: It does become a way of life, not a temporary treatment.
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replied August 11th, 2009
thyroidectomy and tired
6 years ago I had cancer of the thyroid and it was completely removed. I am very tired every day, foggy and dizzy too. Is this what I should continue to expect the rest of my life? I take synthroid as well as cytomel. I have had clean ultrasounds every year and now I am told that I have multiple nodules and enlarged lymph node. Is this something that is common after 6 years? How worried should I be?
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replied August 12th, 2009
Extremely eHealthy
What is your TSH level? How often do you get it checked?

It took me a long time to come even close to a dose that worked for me. I kept asking myself and the doctors, "will I ever feel normal again." Some people find that they can just take their pill and go on with life. Other people (like us), are much more sensitive to small dose differences or tiny fluctuations in our medication.

I am also taking both Synthroid and Cytomel. Personally, I found that I can think much more clearly now that I'm on both. I couldn't concentrate before. I am a pretty articulate person, but I had trouble coming up with words to finish a sentence.

If your doctor is following the guidelines for cancer suppression, he or she wants your TSH to be less than 3 or maybe less than 2, depending on your risk for cancer recurrence. The lower your TSH, the lower your risk of cancer regrowth. Some people feel great between 1 and 2. For others this is too hyperthyroid, which can bring on symptoms, including fatigue, aches and pains, difficulty sleeping, anxiety, etc. In addition, prolonged hyperthyroidism can cause osteoporosis. Unfortunately, we as patients need to make the ultimate decision about what risks in one direction or the other we are willing to accept.

Also unfortunately, it looks as though you are having other on-going concerns with possible regrowth. I'm assuming you went through Radioactive Iodine therapy, right? Have they done any thyroglobulin tests in addition to the ultrasounds? This is a hormone secreted by any thyroid cells. If there are any present, they should secrete this hormone. My doctor says I need to have a thyroglobulin test every year for the rest of my life. So far, I've been clean. I haven't had an ultrasound since before my surgery, but there is probably a specific reason why you are having them done.

Have they done a biopsy on your nodules? If so, what did they say? Is the doctor taking a "wait and see" approach and going to send you for another ultrasound in six months or so? Or does he recommend surgery?

I don't know how worried you should be. The majority of thyroid cancers are very slow growing and treatable, even if they recur. What type did you have?

Sorry about the long post. I start talking about this stuff and I just can't stop. Smile Please write back with more information concerning my questions and maybe we can be of more help.
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replied August 27th, 2009
I found it very helpful to read these posts. I had my total thyroidectomy last November (0Cool and am really struggling - especially since the RAI in March 09 (before that I was on T3 only which was up and down). The first week or so on 50mcg T4 I felt good - back to my pre cancer self (better than in years) but then got tired. So I was put up to 100, then 150mcg which was too much for me and I went hyper. Since then I have been down at 125, then 50 now 100 again. I've been mucking about with my own dosage which probably hasn't helped. But also I've had to find out for myself the fact that taking a multi vit with iron and calcium will interfere with absortion unless you wait 4 hrs between taking it and your T4. I hadn't.

I just feel all over the place, one day Ok, the next in a total fog. I currently struggle to wake after 10hrs of sleep and then hit a wall of tiredness at about 2pm. I have no energy to see people or do anything and I'm self employed so that's pretty stressful! This has to get better right? I have just requested to see an endo as I have not yet seen one just the cancer specialists and my GP who are not expert at this). I have probably read way too much online but I am concerned I may have low functioning adrenals as I had symptoms of that for years before the cancer. I read that that can affect the way you convert T4 to T3. And then I wonder if it's not working because I need the T3 too... Gahhhh it's so so so complicated. I'm hoping the endo will be willing to explore this properly. It's just so frustrating as I feel worried that the doctors won't investigate these things and I will never feel the way I know I can. Obviously having a low day but there we go. Has anyone has experience of getting their cortisol levels checked (to check for adrenal function)? Any help you can offer would be appreciated.
Thanks
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replied September 4th, 2009
Extremely eHealthy
You can take T3 and T4 together. It helped me a lot. Also, you shouldn't mess with your thyroid hormones yourself. It takes at least 3 months to adjust to a new dosage. If you change it yourself every time you feel bad, you're never going to get a consistent blood level for the doctor to test. There are dosages between 50, 100, and 150 that the doctor may prescribe. Remember that the doctor that treated your cancer may want to keep your TSH lower than the normal range in order to suppress future cancer growth (some want it below 2, others below 1). Make sure he consults with the endo about this.

Good luck.
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replied November 14th, 2009
Well, I had a total thyroidectomy with central neck dissection on 10/8/09. There were a few complications and surgery took way longer than they planned. My neck is still pretty swollen and stiff, my voice is not totally back, I am tired, achy in all my joints and not remembering things too well. I get emotional on the very low days and never really feel "normal" I am taking the levathroid and last blood test showed tsh of almost 5. I am scheduled for radioactive iodine on 11/18/09 and have been reading conflicting researches about side effects from that test. I am at the point where I do not trust any of the doctors. Their don't ask, don't tell attitude drives me crazy. I am very impatient and angry with the way they treat patients. Anyway, the lab tech told me to buy lemon drop candy and bring with me to the radioactive iodine procedure and to start sucking on the candies right away. However, I have read research that says that you should not start using the candies until 24 hours after radiation. Any thoughts?
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replied November 16th, 2009
Extremely eHealthy
Are you on the low iodine diet? Have you prepared your house so as to minimize the RAI exposure to others in your house (don't forget about the pets--they are at risk of thyroid damage if they come into contact with it, too) and so as to minimize clean-up afterward? Did you get a prescription for anti-nausea medication in case you feel sick (I definitely needed it)?

I started using the candies a few hours after I got home. Yes, I agree, there are conflicting reports about this. The study I think you're talking about has a few flaws (not being double-blinded, etc), but otherwise, it seems reputable. Personally, I think bringing the candy and starting on it right when you get the pill sounds a bit silly. It takes time for it to get to the salivary glands. If you feel tightness or pain or anything in your cheeks, I would start on the candy right away, but otherwise, you could probably wait 24 hours if you think that would be better for you.

As for the other stuff, don't worry about getting your TSH normal (or even feeling normal) until after you start on the Synthroid/levothyroxine. Cytomil/Levathroid work differently and so the dosage isn't going to be the same. It is going to take monitoring over several months to get your dosage right. Just don't let them throw your dosage up and down too much. Small changes can have a big effect. For example, if 100mcg is too low, starting you on 150 might be way too high. Ask to try 125 and see how that works, first. If it's close, but not quite there, try 137. And don't alter the dosage yourself. A lot of people really mess things up that way. And if your TSH is right, but you don't feel right, ask to try a combination of Levothroid and Levothyroxine (T3/T4 combo)--it worked for me. Also, I cannot stress enough how important it is to take your pill on an empty stomach at the same time every day. Follow the directions about how long you have to wait to take certain things, like iron, calcium, etc.

If you don't trust the doctor monitoring your thyroid cancer or your thyroid levels, that's not good. For one thing, you need to be able to ask questions and get a clear, honest answer. Personally, my ENT was great and even though I moved four hours away, I still go down to see him every 6 months because I trust him. You need to find an ENT or Endocrinologist experienced with treating thyroid cancer that you can trust. Otherwise, you will never feel secure.

Please feel free to write back if you have more questions. A lot of people on here have been through what you are going through and we are happy to help make it easier for others in any way we can. Best of luck to you.
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replied January 25th, 2010
Life After Thyroidectomy
I found Synthroid not to be enough. Cytomel helped tremendously, but I also needed large doses of vitamin D and Calcium, taken in the evening, to take away joint aches and pains and numbness. My endo checks my vit D, calcium, T3, TSH, and all hormone levels. My thyroidectomy was 9 years ago. Initially, it took about 3 years to get all my levels correct, but first I had to find an endo who would listen. That's the hardest part. Listen to your own body, do lots of your own research, and ask lots of questions.
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replied January 26th, 2010
I had a total thyroidectomy in 2007 my TSH was high post surgery. 3 months later I was told that I had had Papillary Cancer, my doctor suggested Radio iodine treatment. I have occular graves disease and researched myself. what I found out was that if a patient has Occular graves radio iodine could cause blindness, it was then decided to increase my dosage of Elthroxin from 1050mg per week, or 150mg per day to 1450 mg per week 200mg x 6 days and 250x 1 day, there are days where I could sleep all day and there are other days where I am anxious and depressed.I also have high cholesterol for which I take 5mg of Crestor I also watch my diet, I try to exercise but my weight remains at about 16 stone and I am only 5' 9". Had I known how this surgery would affect me I don't think I would have gone through with it
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replied February 12th, 2010
I had a TT a little over 6 months ago (23yo). It took a while but the symptoms have become too much. I've gained atleast 20 lbs ( I stopped weighing myself) that I can't lose. I'm 4'9 and every pound shows. I've completely changed my diet to a vegetarian diet and no processed foods, I used to work out 5 days a week but I've gotten to the point where I'm just too tired. The confusion, inability to concentrate and mood swings are affecting my performance at work. In the last week I've started having tingling/numbness in my fingers and light headedness. I called my doctor who says that my levels are fine (I have never had a dosage change) and that he has no idea why I feel the way I do. I'm in the military so this is the doctor I get. There is no second opinion. Is this all in my head? What am I doing wrong? Is there somebody that can help me...
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replied November 13th, 2011
Tingling in fingers, toes and lips after Total Thyroidectomy
The tingling/numbness in your fingers is probably due to low calcium and vitamin d. I have this quite often. I take 2- 600mg plus d vitamins every day and it seems to work. My PMD thought that my parathyroid came out with the thyroid but the pathology report said that the parathyroid was intact. Your parathyroid absorbs the calcium.
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replied November 13th, 2011
600mg OsCal plus extra d - I take 2 daily
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replied February 13th, 2010
Thyroid issues with military healthcare
if you are in the american military contact Militaryonesource.com and leave them a request for a counseler to call you back..they can help you get in contact with a patient advocate through tricare or can help you talk to your first sgt or chaplin who can help you talk to your primary care manager to get you treated for problems you feel like they are ignoring. When i was pregnant we were stationed overseas and I felt lke they weren't taking my chronic insomnia seriously and I got in touch with a patient advocate and they made sure to help me. Also I recently was diagnosed with thyroid cancer. My PCM originally told me my tsh was normal, but I've since found out that military healthcare considers normal up to 5.0 TSH..whereas other med professionals consider anything over 3.0 too high. He told me mine was fine, even though i had symptoms of hyopthyroidism.. thankfully (i suppose) I had a very noticeble lump on my neck that forced their hand to get a biopsy done thus finding the cancer. If it weren't for the lump, i dont think anything would have been done about it. I ma having TT on thursday..hoping it goes well. Good luck with military healthcare, if you contact military onesource they will also research info for you and mail it to you free of charge.
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replied April 28th, 2010
TSH and Synthroid and Exhaustion
MyrahU, thanks for all your insight and info! I am 4 years post-thyroidectomy and still suffer from exhaustion daily. I''m on synthroid and my Doctors want to lower my dose. Yikes! I''m a little confused about the relationship between my TSH level and my Synthroid. --Because my TSH level is too low, (0.01) I need to decrease my Synthroid? I''m hoping you might know more than I do, concerning what I should do next to make sure I don''t have to get a job in a Sleep Lab, sleeping. Thanks to all of you who have been here before me!
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replied October 24th, 2011
Low TSH levels and fatigue
That is correct, I was on 112mcg of synthroid for 6 months, became lethargic, constipated, just had to make myself do what I needed to do. Ended up with acute diverticulitis and had to have a colon resection, bowels still slow to move, now on 125mcg of synthroid, bowels are better but not cured and am still lethargic. I had a total thyroidectomy in 1998 due to follicular and papillary cancer. It is a constant battle with this so READ everything you can about it and be sure your physician knows that you KNOW about the thyroid gland and what to expect.
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replied April 20th, 2012
i have found that with some people synthroid can cause constipation. Uncomfortable to talk about but it is necessary. I have the same problem. The best way to combat this particular side effect is to take Magnesium very night before bed. I take 150mg myself and since they are over the counter on the vitamin aisle they are also relatively cheap.
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replied May 16th, 2010
A Positive Total Thyroidectomy Experience
I'm 39. Lived with enlarged thyroid nodules for most of my life. Finally, had a total thyroidectomy nearly three weeks ago. I spent one night in the hospital. Was out by 10 am the following morning. Walking three miles after three days post surgery. Running after 1.5 weeks and playing tennis after 2 weeks. I was very surprised at how quickly I recovered. Getting back into exercising quickly played a role in that. Yes, I still have a bright red scar/incision and will for months to come but the incision was placed beautifully at the base of my neck which allows it to be easily covered by a shirt, necklace or scarf. I currently take 150 MCG Levoxyl and expect to continue with that amount since my energy levels are unchanged at this point in time. In fact, I'm starting to think my energy levels are a bit higher than normal which is a positive thing. My post-op appointment is Wednesday. Certainly, I will know more then.
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replied May 22nd, 2012
Thank you for this posting. Nice to hear something positive.So much of recovery is on your "mindset" and your positive attitude, and desire to take matters into your own hands to put for the effort to help the recovery go well. So many posts are BAD NEWS, and NEGATIVE attitudes, and it is alarming. I was diagnosed 6 years ago with Hashimoto's and a goiter. Had another ultrasound last month when I switched endo's..She called to say I had 6 nodules, and the thyroid was very "busy"..She upped my synthroid to 1.25, and my TSH level is now .79...She wants to give me as much synthroid possible to "shrink" the nodules, I guess. And, at the .79 I feel ok I guess. Never have any problems swollowing, no neck pain, hoarse voice, etc..so, wouldn't have known I had more nodules if no ultrasound was done. Been feeling ok! But, because the thyroid is "busy" with many small nodules, she said we would "remove" it if the next scan in 3 months shows no change, or larger nodules..I have read so many negative things...bad recovery, blah, blah, blah...Nice to hear your recovery went well...I am about 140lbs, 5ft6, and was curious. Did you gain a ton of weight? I am fearful of this. I work hard to stay fairly in shape, and do NOT want to gain alot. I am hopeful in a few months the new US shows shrinkage, or if not, maybe they can biopsy one of the nodules and see if cancer..If not high risk, and shows benign, and I have no neck problems, why remove whole thyroid gland. But, it the Hashimotos puts me at high rish, maybe best to just remove it regardless of benign or malignant nodules. Not sure...anyhow, was concerned about the disgusting scar, and feeling crappier after surgery, and weigh gain. It sounds like some people heal well, the scar heals nicely, and diet and exercise can keep one thin and healthy. Great to hear. Encouraging rather than discouraging, though some people would rather focus on the negatives and alarm others as opposed to being positive...again, THANK YOU...
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replied June 28th, 2010
Total Thyroid removal and dissection of lymphnodes 6/21/10
I feel I am having a very positive experience as well. Im 28 and was recently diagnosed with Thyroid Cancer.I just recently had a TT, and dissection of lymphnodes(to see if it traveled, it did not! thank God!) last monday6/21/10. I was released the next day. I feel great, really didnt even take any pain medicine. I just had an appt with my endo friday. He took me off 75mcg of synthroid and I now am on cytomel to prepare for the RAI. Nuclear medicine is suppose to call me within the next 2 weeks to schedule my RAI Therapy. Which will take place in the next 6 weeks. I meet with my ENT this thursday coming up 7/1/10. I feel like Im back to my old self! other than, I believe Im starting to struggle with insomnia. This could be,from the fact that i read so many negative stories from this procedure and they get in my head. That's what my bf thinks. However, it's 230am and im wide awake for the 2nd night in a row.
I just want to say that in april, I was at my 2nd Endo who I had been with for about 8 months. It took my switching to a 3rd to be diagnosed!!!! YES, you heard it right! 3 endo!! 3 endocrinologists since January 2009. I knew something wasnt right. After iodine testing, ultrasound after ultrasound, bloodwork, after bloodwork, I had 3 biopsies as well, the first 2 with my first endo came back inconclusive with a-typical cells and folicular liasion, she diagnosed me with Hasshimotos, my 2nd endo just did bloodwork like crazy and ultrasounds. it wasnt until I couldnt take it anymore and just knew something was wrong I didnt feel like myself at all. So, I switched to the 3rd. It took me quite sometime to make the decision too, I thought maybe I was just crazy.Well I got answer ASAP. my very first appt with him, he said based on all my labs from prior tests, he could not rule out cancer, (I almost went thru the roof, because endo 1 and 2 never even mentioned that it could be) and sent me for another biopsy. which came back positive. I feel I am very lucky, especially, because the cancer was on both sides, and one cell was starting to vere off. However, it did not travel into my lymphnodes or bloodstream! This being said. ALWAYS TRUST YOU GUT!!! If your not getting answers and you dont feel like yourself, SWITCH DRS!!! I TOOK 3 to get me diagnosed! I just truly think some DR's do not care. I wish everyone the best that struggles with thyroid issues. It's a rough road!!
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replied October 12th, 2011
I am so glad you finally got an endo that diagnosed you properly! Yours is, unfortunately, an all-too-common experience. I, too, went to three endo's before finally getting a proper diagnosis from a fourth, and the truly bizarre thing is that you could easily feel the growth in my neck. The third endo I saw sent me for an ultrasound, and when it came back said "there's nothing there". I insisted he feel my neck again while we were looking at the ultrasound results together, and he said that I was right, there WAS clearly something there. How confusing! So, I went to the Mayo clinic, where they took biopsies of the growth under ultrasound, and found six tumors. I had a TT that same week. Thankfully , although all were cancerous, it had not spread to my lymph nodes. I am still trying to get my meds right, and I certainly don't feel good yet. But I have faith that I will, and being healthy is far more important than being thin (which I had been all my life, but am no longer...). My issue was complicated by the fact that, six weeks after my TT, complications brought me back in to the Mayo, and they discovered an adrenal tumor. So, another surgery to remove my adrenal, and that makes the med situation a bit more complicated. With good doctors things CAN work out, But you are so right when you say it's a rough road, and you MUST trust your gut instincts. It doesn't help that so many people dismiss Thyroid Cancer as a minor cancer. It's not. The aftereffects of TT are difficult, at best. I wish you luck in your continuing life post-TT, and hope all continues to go well for you and all of my "comrades" in the Thyroid Cancer war!
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replied August 17th, 2010
Total thyroidectomy vs. remaining on anti-thyroid drugs
I've been on an anti-thyroid drug for about 10 years (tapazole, very small dose of 5 mg). However, I'm tired of having a low white blood cell count which seems to lead to sinus or bronchial infections every other month, plus it seems to have caused very wispy hair, and makes me slightly bloated. I'm curious if others feel that a TT may be worth the obvious risks that all of your posts present. My docs tell me that they're ready to do a TT if I want it. (Fyi, my TSH varies from around 0.9-2.0).
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replied August 18th, 2010
I've been on an anti-thyroid drug for about 10 years (tapazole, very small dose of 5 mg) but am tired of having a low white blood cell count which leads to sinus or bronchial infections about every other month, plus it seems to have caused very wispy hair, and makes me slightly bloated. I'm curious if others feel that a TT may be worth the obvious risks that all of your posts present. My docs tell me that they're ready to do a TT if I want it.
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