14 Months After Thyroidectomy

dodgerwife
dodgerwife Member Posts: 4
edited March 2014 in Thyroid Cancer #1
My thyroid was removed due to papillary cancer in April 2008. I am currently taking 275! mcg of synthyroid. When I told my endo 3 weeks ago that I feel cruddy, I had a blood panel done and everything is in the normal range. Reading other posts I feel a little discouraged that this feeling of fatigue is so common amongst those who are years out from having had the surgery. That being said, I have had a sore throat for several months and my tongue has never felt right after the surgery, still a little numb in spots. I am calling the ear/nose/throat doc who did the surgery, but perhaps someone else on the forum has had a similar experience and can enlighten me?

Comments

  • Phyllis900
    Phyllis900 Member Posts: 21
    Mine Too
    You are not alone. Mine was removed in Nov'08 along with 90++ lymphnodes. my tongue was alright, but i keep having sore throat. my surgery site is still numb and it is very itchy.I experience EXTREME FATIGUE. i feel tired when i wake up in the morning, all through out my day. it makes me think that maybe i did not sleep the previous night. i took sleeping pills, but not much help.
  • dodgerwife
    dodgerwife Member Posts: 4

    Mine Too
    You are not alone. Mine was removed in Nov'08 along with 90++ lymphnodes. my tongue was alright, but i keep having sore throat. my surgery site is still numb and it is very itchy.I experience EXTREME FATIGUE. i feel tired when i wake up in the morning, all through out my day. it makes me think that maybe i did not sleep the previous night. i took sleeping pills, but not much help.

    mine too
    Thank you for your response! I am also on another chat site and didn't hear back from anyone last night. This fatigue is what's really bothersome for me also. I alternate a night of Lunesta with an Ambien night as I am premenopausal and CANNOT sleep throught the night. I also slog through the day. The worst time is around 2:00 through 4 or so. After that I feel a little perkier. My "To do" list isn't getting done very quickly this summer, however I have discovered the best place in the house to nap. I'll let you know in a week or two what the arrogant, condescending, surgeon finds, hopefully I won't have to be too insistent that he needs to take a look. Thanks again!
  • usljh10
    usljh10 Member Posts: 85 Member

    mine too
    Thank you for your response! I am also on another chat site and didn't hear back from anyone last night. This fatigue is what's really bothersome for me also. I alternate a night of Lunesta with an Ambien night as I am premenopausal and CANNOT sleep throught the night. I also slog through the day. The worst time is around 2:00 through 4 or so. After that I feel a little perkier. My "To do" list isn't getting done very quickly this summer, however I have discovered the best place in the house to nap. I'll let you know in a week or two what the arrogant, condescending, surgeon finds, hopefully I won't have to be too insistent that he needs to take a look. Thanks again!

    me too!
    I also had my surgeries in April 2008. I've had my synthroid changed 6 times. My cancer threw me into full blown menopause. So getting my synthroid regulated has been a ordeal all it's own. I wake up in the middle of the night sweating like a pig. My moods are crazy. no engery. I have a hard time concentrating. My voice seems to ship out on me and I feel like I have a frog in my throat. I take 112mci now plus calcium and vit d. I feel like i'm on some kind of hormone roller coster. And if I hear one more time that I had the good cancer I'm gonna scream!What's good about it?
    Just overlook this,..... I'm having a bad day.
  • dodgerwife
    dodgerwife Member Posts: 4
    usljh10 said:

    me too!
    I also had my surgeries in April 2008. I've had my synthroid changed 6 times. My cancer threw me into full blown menopause. So getting my synthroid regulated has been a ordeal all it's own. I wake up in the middle of the night sweating like a pig. My moods are crazy. no engery. I have a hard time concentrating. My voice seems to ship out on me and I feel like I have a frog in my throat. I take 112mci now plus calcium and vit d. I feel like i'm on some kind of hormone roller coster. And if I hear one more time that I had the good cancer I'm gonna scream!What's good about it?
    Just overlook this,..... I'm having a bad day.

    Me Too
    Holy cow, are you my twin? Although I haven't started menopause yet at 51 (according to blood tests done in early June) everything that you've said could be me. I was able to get an appointment tomorrow the 17th with my surgeon. My 275 mcg of Synthroid is as high as my endo prescribes. I'm 5'10'' and 150 lbs, taking a dose that he describes as "large man sized". Also taking calcium and had the 3rd of 4 B-12 shots this week. I really don't want to see the surgeon again as he talks to me like I'm mentally challenged, but whatever it takes to get some answers to my symptoms. I haven't found anything on-line similar to what I'm feeling, you're the second peron who's mentioned the throat thing happening to them also. Yea! Sort of. Sorry, you've had a bad day, but at least you now know that there's other people who can totally relate!
  • usljh10
    usljh10 Member Posts: 85 Member

    Me Too
    Holy cow, are you my twin? Although I haven't started menopause yet at 51 (according to blood tests done in early June) everything that you've said could be me. I was able to get an appointment tomorrow the 17th with my surgeon. My 275 mcg of Synthroid is as high as my endo prescribes. I'm 5'10'' and 150 lbs, taking a dose that he describes as "large man sized". Also taking calcium and had the 3rd of 4 B-12 shots this week. I really don't want to see the surgeon again as he talks to me like I'm mentally challenged, but whatever it takes to get some answers to my symptoms. I haven't found anything on-line similar to what I'm feeling, you're the second peron who's mentioned the throat thing happening to them also. Yea! Sort of. Sorry, you've had a bad day, but at least you now know that there's other people who can totally relate!

    Thats a lot of synthroid
    Thats a lot of synthroid. Your a lot taller but I weigh more. I'm 48yrs old, 5'4" and 159# and loosing. I've started back on weight watchers. I gained about 20# since all this begin so I'm trying to get back on track. Do you get lite headed? Are you having hot flashes? Are you seeing a ENDO?I'm sorry about all the questions. You said you were going back to your surgent? Is this about your throat? My endo told me I had a lot of scar tissue from the 2 surgeries and this could cause some tightening and swelling. See ya, Lisa
  • jcvolt
    jcvolt Member Posts: 69

    Me Too
    Holy cow, are you my twin? Although I haven't started menopause yet at 51 (according to blood tests done in early June) everything that you've said could be me. I was able to get an appointment tomorrow the 17th with my surgeon. My 275 mcg of Synthroid is as high as my endo prescribes. I'm 5'10'' and 150 lbs, taking a dose that he describes as "large man sized". Also taking calcium and had the 3rd of 4 B-12 shots this week. I really don't want to see the surgeon again as he talks to me like I'm mentally challenged, but whatever it takes to get some answers to my symptoms. I haven't found anything on-line similar to what I'm feeling, you're the second peron who's mentioned the throat thing happening to them also. Yea! Sort of. Sorry, you've had a bad day, but at least you now know that there's other people who can totally relate!

    Wow
    That is a really high dose of synthroid, I weigh almost as much as you and I am taking 125mcg.
  • Sally08
    Sally08 Member Posts: 46
    I had my first thyroidectomy
    I had my first thyroidectomy (rather... attempt at it) in October 2008. then in Jan 2009 they went back in to get the rest/what the first surgeon left behind. my second surgeon was much more understanding and realistic in terms of explaining things to me and answering any/all questions. He told me that I could feel the "frog in the throat feeling" for up to 6 months after.... but sometimes .... depending on the healing process it can last for up to a year. Also with my second surgery they noticed that the scar tissue had wrapped around and entangled itself on the muscle in my neck... so they had to remove part of the muscle to get the extra scar tissue out to keep it from growing any more.
    I myself have had fatigue like never before.... I get extremely dizzy and very weak feeling. after my RAI I told my endo that I was feeling as if I was hypothyroid... she dismissed it and went on her way..... by April when my next appointment was.... she did the normal blood test for my TSH and thryglobulin counts.... they revealed that I was indeed hypothyroid.... I was on 125 mcg of levothyroxine (synthroid) then so she upped me to 150 mcg.... did another test after 6 weeks.... and I was still hypothyroid.... so now I'm on 175 mcg.... only to have another test done in about 6 weeks. What fun lmao
    my incision has been giving me pain letely though... sharp sensations like a razor is cutting part of it open again.... however my endo says that's normal.... well, I knew the itching would be normal but this pain is sometimes almost unbearable.

    I never could have imagined how much all this would still affect me 5 months later.....
  • usljh10
    usljh10 Member Posts: 85 Member
    Sally08 said:

    I had my first thyroidectomy
    I had my first thyroidectomy (rather... attempt at it) in October 2008. then in Jan 2009 they went back in to get the rest/what the first surgeon left behind. my second surgeon was much more understanding and realistic in terms of explaining things to me and answering any/all questions. He told me that I could feel the "frog in the throat feeling" for up to 6 months after.... but sometimes .... depending on the healing process it can last for up to a year. Also with my second surgery they noticed that the scar tissue had wrapped around and entangled itself on the muscle in my neck... so they had to remove part of the muscle to get the extra scar tissue out to keep it from growing any more.
    I myself have had fatigue like never before.... I get extremely dizzy and very weak feeling. after my RAI I told my endo that I was feeling as if I was hypothyroid... she dismissed it and went on her way..... by April when my next appointment was.... she did the normal blood test for my TSH and thryglobulin counts.... they revealed that I was indeed hypothyroid.... I was on 125 mcg of levothyroxine (synthroid) then so she upped me to 150 mcg.... did another test after 6 weeks.... and I was still hypothyroid.... so now I'm on 175 mcg.... only to have another test done in about 6 weeks. What fun lmao
    my incision has been giving me pain letely though... sharp sensations like a razor is cutting part of it open again.... however my endo says that's normal.... well, I knew the itching would be normal but this pain is sometimes almost unbearable.

    I never could have imagined how much all this would still affect me 5 months later.....

    Pain 5 months later...
    I don't think having sharp pain in your throat is normal after a thyroidectomy, 5 months later.That really sounds wierd.I have a little discomfort but nothing that is unbearable. Can you see another Doctor, maybe your GP? I would request a xray. It could be somethingelse.
  • usljh10
    usljh10 Member Posts: 85 Member
    Sally08 said:

    I had my first thyroidectomy
    I had my first thyroidectomy (rather... attempt at it) in October 2008. then in Jan 2009 they went back in to get the rest/what the first surgeon left behind. my second surgeon was much more understanding and realistic in terms of explaining things to me and answering any/all questions. He told me that I could feel the "frog in the throat feeling" for up to 6 months after.... but sometimes .... depending on the healing process it can last for up to a year. Also with my second surgery they noticed that the scar tissue had wrapped around and entangled itself on the muscle in my neck... so they had to remove part of the muscle to get the extra scar tissue out to keep it from growing any more.
    I myself have had fatigue like never before.... I get extremely dizzy and very weak feeling. after my RAI I told my endo that I was feeling as if I was hypothyroid... she dismissed it and went on her way..... by April when my next appointment was.... she did the normal blood test for my TSH and thryglobulin counts.... they revealed that I was indeed hypothyroid.... I was on 125 mcg of levothyroxine (synthroid) then so she upped me to 150 mcg.... did another test after 6 weeks.... and I was still hypothyroid.... so now I'm on 175 mcg.... only to have another test done in about 6 weeks. What fun lmao
    my incision has been giving me pain letely though... sharp sensations like a razor is cutting part of it open again.... however my endo says that's normal.... well, I knew the itching would be normal but this pain is sometimes almost unbearable.

    I never could have imagined how much all this would still affect me 5 months later.....

    Pain 5 months later...
    I don't think having sharp pain in your throat is normal after a thyroidectomy, 5 months later.That really sounds wierd.I have a little discomfort but nothing that is unbearable. Can you see another Doctor, maybe your GP? I would request a xray. It could be somethingelse.
  • Sally08
    Sally08 Member Posts: 46
    usljh10 said:

    Pain 5 months later...
    I don't think having sharp pain in your throat is normal after a thyroidectomy, 5 months later.That really sounds wierd.I have a little discomfort but nothing that is unbearable. Can you see another Doctor, maybe your GP? I would request a xray. It could be somethingelse.

    It's not so much in my
    It's not so much in my throat.... but moreso immediate center of my incision... where those 2 bumpy feeling things are in the front/middle of the clavical bone. My endo said it's just the incision healing.... that the first incision might not have had enough time to heal before the second surgery so that it might take a little longer to heal from the second one... what's a GP?
    I meet my new Primary Care Physician tomorrow ( I changed insurance companies So that I could get a second opinion from someone specific ) So I know I'm going to hopefully get some answers.
  • dodgerwife
    dodgerwife Member Posts: 4
    Sally08 said:

    It's not so much in my
    It's not so much in my throat.... but moreso immediate center of my incision... where those 2 bumpy feeling things are in the front/middle of the clavical bone. My endo said it's just the incision healing.... that the first incision might not have had enough time to heal before the second surgery so that it might take a little longer to heal from the second one... what's a GP?
    I meet my new Primary Care Physician tomorrow ( I changed insurance companies So that I could get a second opinion from someone specific ) So I know I'm going to hopefully get some answers.

    It's not so much in my
    I believe that the doctor's comment about healing is correct. According to my doc, it takes quite a bit of time for all the severed nerve ending to connect properly. My tongue still has numb spots. In regards to my sore throat the answer is.......a "massive" infection of my Larynx. It has probably been ongoing for the several months that I have been so fatigued. In addition, there is evidence of gastric reflux whle I sleep, further worsening the symptoms. So, no talking for several days, antibiotics and acid inhibitor. I was so thrilled that it wasn't a return of cancer that I actually hugged the little guy!
  • les2860
    les2860 Member Posts: 5
    usljh10 said:

    me too!
    I also had my surgeries in April 2008. I've had my synthroid changed 6 times. My cancer threw me into full blown menopause. So getting my synthroid regulated has been a ordeal all it's own. I wake up in the middle of the night sweating like a pig. My moods are crazy. no engery. I have a hard time concentrating. My voice seems to ship out on me and I feel like I have a frog in my throat. I take 112mci now plus calcium and vit d. I feel like i'm on some kind of hormone roller coster. And if I hear one more time that I had the good cancer I'm gonna scream!What's good about it?
    Just overlook this,..... I'm having a bad day.

    me too withthe full blown
    me too withthe full blown menapause...so much fun from reguar cycles to nothing...awful hormonal flux!!!
  • usljh10
    usljh10 Member Posts: 85 Member
    les2860 said:

    me too withthe full blown
    me too withthe full blown menapause...so much fun from reguar cycles to nothing...awful hormonal flux!!!

    full blown
    How are you dealing with all it? Don't you just love having to figure out if it menopause or it it the thyroid hormone. The night sweats and low engery.It all seems to tie together. My doctor wants me to call him when I loose 10lbs so he can lower my synthroid. I don't think I will because my engery level will slow down. I feel pretty good on 112. What are you on?
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