4 mo. after Thyroid Surgery

skcalkins
skcalkins Member Posts: 39
edited March 2014 in Thyroid Cancer #1
Hi all,

Well it's been 4 mo. since my TT and 2 mo. since the RAI. I'm not sleeping 16hrs a day anymore but I'm still tired. I have to pace myself and even light housework can wear me out. I have been having joint and muscle pain. I think my synthroid dose is too low but not sure if thats the cause. Doc has me on 100mg. I only had 100 of the RAI. I am going to get my bloodwork done this week then see the doc in 2wks. Also I have noticed I am having moles and a few raised freckles come up(I already had a few moles). Anyone else having these symtoms? Another question does anyone with Thyroid problems have Lupus? They caught the inflamed Thyroid because I was asking about the rash around my neck that I have that gets really red and raised up after a shower. I haven't been tested yet as that got put on the back burner what with the Thyroid issue and all.

Thanks for any help,
Shawna

Comments

  • skcalkins
    skcalkins Member Posts: 39
    #2
    Nobody else has these
    Nobody else has these problems?
  • alapah
    alapah Member Posts: 287
    #3
    skcalkins said:

    Nobody else has these
    Nobody else has these problems?

    It does take a while to
    It does take a while to determine the correct synthroid/levothyroxine dosage for each person but I hope the docs are able to get your levels right sooner rather than later. It's a bummer dealing with the lethargy etc as they sort it out.

    Lupus is an autoimmune disease, isn't it? do you happen to know if you had Hashimoto's - that's also an autoimmune disease, but of the thyroid. I had Hashis and didn't know it. It showed up in the pathology reports. I wonder if one has one autoimmune disease the are susceptible to others.

    To be on the safe side, I would highly recommend getting those new moles and freckles checked out by a dermatologist. Every case is so different and I don't mean to cause alarm, but I was diagnosed with melanoma in situ around within months of my thyroid cancer diagnosis. Such a slim chance you'd face the same thing and I almost didn't mention it here but it's just a good practice to get new moles looked at. When they check back fine, it's just added peace of mind. There is, apparently, some kind of connection there among some patients.

    You might want to ask the same questions of the group at the thyca group on YahooGroups - I seem to recall reading messages from a few that post there who have lupus. Best to you.
  • skcalkins
    skcalkins Member Posts: 39
    #4
    alapah said:

    It does take a while to
    It does take a while to determine the correct synthroid/levothyroxine dosage for each person but I hope the docs are able to get your levels right sooner rather than later. It's a bummer dealing with the lethargy etc as they sort it out.

    Lupus is an autoimmune disease, isn't it? do you happen to know if you had Hashimoto's - that's also an autoimmune disease, but of the thyroid. I had Hashis and didn't know it. It showed up in the pathology reports. I wonder if one has one autoimmune disease the are susceptible to others.

    To be on the safe side, I would highly recommend getting those new moles and freckles checked out by a dermatologist. Every case is so different and I don't mean to cause alarm, but I was diagnosed with melanoma in situ around within months of my thyroid cancer diagnosis. Such a slim chance you'd face the same thing and I almost didn't mention it here but it's just a good practice to get new moles looked at. When they check back fine, it's just added peace of mind. There is, apparently, some kind of connection there among some patients.

    You might want to ask the same questions of the group at the thyca group on YahooGroups - I seem to recall reading messages from a few that post there who have lupus. Best to you.

    Thanks for the reply, I was
    Thanks for the reply, I was starting to worry it was all in my head. I will be sure to check out the Yahoo groups thing. It's nice to talk to people who understand instead of talking to ones who say they do but, they really don't get it. Don't worry about scarying me with anything, nothing surprises me anymore, you just have to roll with the punches and hold on to God. He's the onlyone who keeps me sane anymore.

    Thanks again
  • alapah
    alapah Member Posts: 287
    #5
    skcalkins said:

    Thanks for the reply, I was
    Thanks for the reply, I was starting to worry it was all in my head. I will be sure to check out the Yahoo groups thing. It's nice to talk to people who understand instead of talking to ones who say they do but, they really don't get it. Don't worry about scarying me with anything, nothing surprises me anymore, you just have to roll with the punches and hold on to God. He's the onlyone who keeps me sane anymore.

    Thanks again

    Anytime
    I understand your attitude about rolling with the punches. Best to face it and go forward. I'm sending good vibes your way!
  • skcalkins
    skcalkins Member Posts: 39
    #6
    alapah said:

    Anytime
    I understand your attitude about rolling with the punches. Best to face it and go forward. I'm sending good vibes your way!

    Thanks Alapah good vibes as
    Thanks Alapah good vibes as well as prayers are always welcome. Hope your doing well.
  • vickihol
    vickihol Member Posts: 12
    #7
    I had my TT June 3. Small
    I had my TT June 3. Small papillary cancer. I have not had RAI, but I still tire very easily. Some days feel like I have no energy at all. I have been having a lot of joint pain; didn't even think that it might be related. My synthroid dose is 100 mg also. Like you, I think the dose is too low. I get new bloodwork done next week and see my doctor in two weeks, too. My doctor has not even talked about RAI. I don't really understand why he hasn't. I'm going to ask him next time. Why did you have the RAI?
  • skcalkins
    skcalkins Member Posts: 39
    #8
    vickihol said:

    I had my TT June 3. Small
    I had my TT June 3. Small papillary cancer. I have not had RAI, but I still tire very easily. Some days feel like I have no energy at all. I have been having a lot of joint pain; didn't even think that it might be related. My synthroid dose is 100 mg also. Like you, I think the dose is too low. I get new bloodwork done next week and see my doctor in two weeks, too. My doctor has not even talked about RAI. I don't really understand why he hasn't. I'm going to ask him next time. Why did you have the RAI?

    Even though they are sure
    Even though they are sure they got it all they still did the RAI just incase or rement thyroid tissue. I thought everyone got the RAI if it was cancer. Still learning about all this so maybe I'm wrong. I didn't think the joint pain and muscle stiffness was related either till I went for the RAI and my Endo told me it was from going hypothyroid for the treatment. I would ask your Dr. about it for sure. Hope it goes well. I'm here if you need to talk.
  • vickihol
    vickihol Member Posts: 12
    #9
    skcalkins said:

    Even though they are sure
    Even though they are sure they got it all they still did the RAI just incase or rement thyroid tissue. I thought everyone got the RAI if it was cancer. Still learning about all this so maybe I'm wrong. I didn't think the joint pain and muscle stiffness was related either till I went for the RAI and my Endo told me it was from going hypothyroid for the treatment. I would ask your Dr. about it for sure. Hope it goes well. I'm here if you need to talk.

    I have been told that they
    I have been told that they got all my cancer also. My endo told me that I do still have some thyroid tissue so he wanted to keep me borderline hypo, and that I should not worry about recurrance. This is all new to me. Trying to learn as much as I can. I will definitely ask about the RAI next office visit. Hope everything goes well for you too.
  • linda77
    linda77 Member Posts: 1
    #10
    vickihol said:

    I have been told that they
    I have been told that they got all my cancer also. My endo told me that I do still have some thyroid tissue so he wanted to keep me borderline hypo, and that I should not worry about recurrance. This is all new to me. Trying to learn as much as I can. I will definitely ask about the RAI next office visit. Hope everything goes well for you too.

    Hi all - I'm new here. I
    Hi all - I'm new here. I had thyroid cancer 24 years ago. But I recently had a scare, my doctor who originally found the cancer thought he felt something during an exam. I just had scan and found that there was nothing to worry about. Easy for them to say? I also had a "piece" of my thyroid left from my surgery. I did not have radiation, since my cancer was "encapsulated", it was felt (way back then) that it was not necessary. I guess we all have scares and just have to be thankful for every day that we are healthy.

    It took me a while to get regulated on the synthroid, however, once I was it truly is like there is nothing wrong. I have been on the same dosage for almost the entire 24 years, but I do get checked every year to make sure all's right with the world.

    I have had issues with skin cancers since my surgery, had no idea that it could be related. Luckily my skin cancers have been basal cell. I also had shingles about 4 months after my surgery, I suspect that the impaired immune system had something to do with that.

    I know how scary this can all be.
  • Stephanie6
    Stephanie6 Member Posts: 10
    #11
    linda77 said:

    Hi all - I'm new here. I
    Hi all - I'm new here. I had thyroid cancer 24 years ago. But I recently had a scare, my doctor who originally found the cancer thought he felt something during an exam. I just had scan and found that there was nothing to worry about. Easy for them to say? I also had a "piece" of my thyroid left from my surgery. I did not have radiation, since my cancer was "encapsulated", it was felt (way back then) that it was not necessary. I guess we all have scares and just have to be thankful for every day that we are healthy.

    It took me a while to get regulated on the synthroid, however, once I was it truly is like there is nothing wrong. I have been on the same dosage for almost the entire 24 years, but I do get checked every year to make sure all's right with the world.

    I have had issues with skin cancers since my surgery, had no idea that it could be related. Luckily my skin cancers have been basal cell. I also had shingles about 4 months after my surgery, I suspect that the impaired immune system had something to do with that.

    I know how scary this can all be.

    WOW..you are my angel of hope!
    I found my lump September 11. My Doctor saw me the 15. I had an ultrasound, then referred to a surgeon. My Doctor told me my levels were normal. The fact that I had more than one lump was good news. I can tell you she was wrong and should have never said that. My surgeon looked at the ultrasound and said he was concerned. He did a biopsy and then he told me he would call me Thursday or Friday with the results. He didn't so I went to the hospital at records and pulled all my records. I found out it was cancer in the parking lot of the hospital. You have to learn to accept whats ahead and start studying. I read all weekend. My doctor called me in on Tuesday. I was then told yes it was...which I already knew. I had my plan already set. He was impressed. My surgery will be next week. That's 34 days after finding my lump...CANCER, and now look at me:)) I want this OUT!! I am praying that it goes well. I read your comment, and I feel that I now can sleep at night!!!!! I LOVE YOU AND I DON"T EVEN KNOW YOU!!!!!!!
  • sunnyaz
    sunnyaz Member Posts: 582
    #12
    Stephanie6 said:

    WOW..you are my angel of hope!
    I found my lump September 11. My Doctor saw me the 15. I had an ultrasound, then referred to a surgeon. My Doctor told me my levels were normal. The fact that I had more than one lump was good news. I can tell you she was wrong and should have never said that. My surgeon looked at the ultrasound and said he was concerned. He did a biopsy and then he told me he would call me Thursday or Friday with the results. He didn't so I went to the hospital at records and pulled all my records. I found out it was cancer in the parking lot of the hospital. You have to learn to accept whats ahead and start studying. I read all weekend. My doctor called me in on Tuesday. I was then told yes it was...which I already knew. I had my plan already set. He was impressed. My surgery will be next week. That's 34 days after finding my lump...CANCER, and now look at me:)) I want this OUT!! I am praying that it goes well. I read your comment, and I feel that I now can sleep at night!!!!! I LOVE YOU AND I DON"T EVEN KNOW YOU!!!!!!!

    Hi Everyone!
    My TT was in November of 2009. It was a small Papillary cancer, stage 1. Yes, I also found my own lump and insisted on a biopsy. My doctor did not want me to do radiation after my surgery. He said "the benefits do not outweigh the risks." The truth is, there is very little risk to RAI. I should have had the RAI because even my small stage 1 cancer returned to invade my Lymph nodes. Thirty four were removed only seven months later. It was at this point I insisted on RAI. For everyone's information: Once you have cancer of the Thyroid and have a Total Thyroidectomy there are always Thyroid cells remaining. The surgeon can't possible scrape away all of the cells without doing damage to your throat causing vocal cord and/or Larynx problems. This is the main reason for RAI. To safely remove the rest of those cells. If I had known I would undergo a second and more invasive surgery, I would have insisted on RAI after my TT. Also, I take 175 mcg's of Synthroid if that gives anyone any indication of what they may need. It depends on each person but I am thinking that 100 mcg's is probably too low. I am not an expert or a doctor but I am in the medical field. This is how I was able to diagnose my condition. It wasn't easy convincing my doctor that I had something wrong with my Thyroid. My blood work was normal until the day I had my TT. My doctor never put all of my symptoms together even after I brought him a list and told him that these are classic signs of Thyroid problems. We MUST be our own advocates. Good luck to you Stephanie, this is a relatively easy surgery. Please do your best to avoid a second. My TT scar healed very quickly (within a few months) and was barely noticeable, without any pain. The second surgery left me with a scar from the base of one ear to the opposite side of my neck with lots of painful nerve damage. God Bless!
  • nasher
    nasher Member Posts: 505 Member
    #13
    Stephanie6 said:

    WOW..you are my angel of hope!
    I found my lump September 11. My Doctor saw me the 15. I had an ultrasound, then referred to a surgeon. My Doctor told me my levels were normal. The fact that I had more than one lump was good news. I can tell you she was wrong and should have never said that. My surgeon looked at the ultrasound and said he was concerned. He did a biopsy and then he told me he would call me Thursday or Friday with the results. He didn't so I went to the hospital at records and pulled all my records. I found out it was cancer in the parking lot of the hospital. You have to learn to accept whats ahead and start studying. I read all weekend. My doctor called me in on Tuesday. I was then told yes it was...which I already knew. I had my plan already set. He was impressed. My surgery will be next week. That's 34 days after finding my lump...CANCER, and now look at me:)) I want this OUT!! I am praying that it goes well. I read your comment, and I feel that I now can sleep at night!!!!! I LOVE YOU AND I DON"T EVEN KNOW YOU!!!!!!!

    I am 7 months out now from
    I am 7 months out now from my TT and 5 months since my RAI treatment

    I am doing well and I recomend to everyone to keep pushing if they tell you that you dont need RAI. they admit they leave about 5% of your thyroid when they remove it. To remove it all they will damage your vocal cords, probably remove many lymph nodes and do alot of other issues.. but if they remove what they can and then do the radiation treatmen (once you recover) then they will be able to absolutly minimize the chance of reocourance.

    remember once they take your thyroid out that you are a survivor. sure there is alot of recovery to go but you have survived and you are getting better.

    @ Stephanie6 - they found my enlarged node 5 december 2009 and it wasnt removed till Feb 22.. be glad its only 34 days. btw the enlarged portion of my thyroid was the size of a poolball.

    if you havent go to www.thyca.org it has alot of information that will help you through all of this..
    Ask questions we will help all we can and we are here to help
  • carelin4
    carelin4 Member Posts: 2
    #14
    sunnyaz said:

    Hi Everyone!
    My TT was in November of 2009. It was a small Papillary cancer, stage 1. Yes, I also found my own lump and insisted on a biopsy. My doctor did not want me to do radiation after my surgery. He said "the benefits do not outweigh the risks." The truth is, there is very little risk to RAI. I should have had the RAI because even my small stage 1 cancer returned to invade my Lymph nodes. Thirty four were removed only seven months later. It was at this point I insisted on RAI. For everyone's information: Once you have cancer of the Thyroid and have a Total Thyroidectomy there are always Thyroid cells remaining. The surgeon can't possible scrape away all of the cells without doing damage to your throat causing vocal cord and/or Larynx problems. This is the main reason for RAI. To safely remove the rest of those cells. If I had known I would undergo a second and more invasive surgery, I would have insisted on RAI after my TT. Also, I take 175 mcg's of Synthroid if that gives anyone any indication of what they may need. It depends on each person but I am thinking that 100 mcg's is probably too low. I am not an expert or a doctor but I am in the medical field. This is how I was able to diagnose my condition. It wasn't easy convincing my doctor that I had something wrong with my Thyroid. My blood work was normal until the day I had my TT. My doctor never put all of my symptoms together even after I brought him a list and told him that these are classic signs of Thyroid problems. We MUST be our own advocates. Good luck to you Stephanie, this is a relatively easy surgery. Please do your best to avoid a second. My TT scar healed very quickly (within a few months) and was barely noticeable, without any pain. The second surgery left me with a scar from the base of one ear to the opposite side of my neck with lots of painful nerve damage. God Bless!

    The more I read about thyroid cancer
    The more I read about thyroid cancer the more I can see that others have suffered like me. I had parathyroid cancer and they removed my right top and bottom parathyroid and my right thyroid with no other treatment.My surgeon didn't believe in radiation therapy. It was only found becuse I was vomiting and collapsing at work. It took me three months to get back to work part time I have had lots of kidney problems these past two years since my operation now they are going to do more tests on a frozen section of my cancer as I might need some sort of treatment.
    A so called friend of mine told me today my cancer was nothing or I would be bed ridden and have no hair. I lost it with her as I have been bed ridden but I also need to live my life without worrying every minute about what will happen next. That is one less friend I now have as I need positve people around me.Take care!
  • amorriso
    amorriso Member Posts: 185
    #15
    Stephanie6 said:

    WOW..you are my angel of hope!
    I found my lump September 11. My Doctor saw me the 15. I had an ultrasound, then referred to a surgeon. My Doctor told me my levels were normal. The fact that I had more than one lump was good news. I can tell you she was wrong and should have never said that. My surgeon looked at the ultrasound and said he was concerned. He did a biopsy and then he told me he would call me Thursday or Friday with the results. He didn't so I went to the hospital at records and pulled all my records. I found out it was cancer in the parking lot of the hospital. You have to learn to accept whats ahead and start studying. I read all weekend. My doctor called me in on Tuesday. I was then told yes it was...which I already knew. I had my plan already set. He was impressed. My surgery will be next week. That's 34 days after finding my lump...CANCER, and now look at me:)) I want this OUT!! I am praying that it goes well. I read your comment, and I feel that I now can sleep at night!!!!! I LOVE YOU AND I DON"T EVEN KNOW YOU!!!!!!!

    hi
    Hi stepanie: You and I are almost at the exact same point with this. I found out in early september, but was really fortunate and was able to have my surgery sept 28. I'm three weeks post op and feeling pretty good. It took awhile to get back on my feet after surgery - thats when I discovered this website. All the little things the doctors didnt mention and I was wondering about seem to be perfectly normal. I will do my RAI treatment on Nov 1. I've done a ton of reading too - its really helped me.

    Best of luck with your surgery - let me know how you are doing.

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