feeling awful need some answers

shesabutterfly2010
shesabutterfly2010 Member Posts: 2
in Thyroid Cancer #1

Good Morning everyone. I just need to know if anyone has the same issue.  I know I felt like I was superwoman before all this but I just can't deal with feeling like I do.  I was diagnoised with stage one papollary thyroid cancer in July 2010 after the first surgery they went in and took the rest out 5 days later.  I then suffered a stroke from lack of calcium and was in ICu for 4 days.  I went thru the usual treatment and taking syntroid and calcuims vitamin d and such.  It is now 2014 I still feel horrible!!!! My body aches I have no energy migraines, mood swings, sleep problems.  I am giving my notice at my job to day.  I can't handle the stress on my body anymore.  I have been denying it for about 6 months because I don't want to let anyone down and I hide my symptoms as much as I can. That is not able to happen anymore. I limp, hurt, and totally spent.  I eat an organic non gmo gluten free diet.  I have always tried to be active it has come to the point I have to try and push myself thru daily tasks.  This is not me.  My family and husband have been trying to give me a reality check because they see the imflamation in my face, how it hurts for them to hug me or touch me and all i want to do is find time to rest and sleep.  Please let me know if anyone else feels the same way. I have never recovered from this cancer it has in most part just gotten worse.  Oh and to top it off I am 40 years old and they have me on birth control to control me menstral cycles because they are coming so fequently and my estrogen levels are below 5! I am in a tailspin and don't know where to start especially since my endo says all levels are normal! What is NORMAL??? Cause for me that isn't good enough.

 

Sincerely

Struggling!

Comments

  • dpeters72
    dpeters72 Member Posts: 2
    #2
    Empathy

    Dear Struggling,

    Oh My Goodness!  I feel for you.  How awful!  I, too, am struggling with my recovery, but not nearly as severely as you are.  I am suffering migraines, weight gain, insomnia, constant exhaustion, and am always cold.  I keep a blanket at work to wrap up in, and often end up calling ppl on my drive home from work so I don't fall asleep while driving.  I still have bouts of depression as well.  I have had my levels checked, and been told that they are normal....I beg to differ.

     

    My husband actually started to do some research and led me to this site.  So far, I have learned I am not taking enough medicine for my weight...it's normal to gain weight ;-(, and I shouldn't be taking the generic brand of the synthroid medicine.  

     

    I am sure you have already done your homework, and exhausted all of your options so all I can offer is support and minor empathy.  Your family obviously loves you and are being very supportive.  It is a good thing that you are able to stop working financially to focus on your recovery.  Look at this as an opportunity to take stock...maybe take a couple of classes, start a second/less stressful or part time career from home?

    Good Luck!

  • shesabutterfly2010
    shesabutterfly2010 Member Posts: 2
    #3
    dpeters72 said:

    Empathy

    Dear Struggling,

    Oh My Goodness!  I feel for you.  How awful!  I, too, am struggling with my recovery, but not nearly as severely as you are.  I am suffering migraines, weight gain, insomnia, constant exhaustion, and am always cold.  I keep a blanket at work to wrap up in, and often end up calling ppl on my drive home from work so I don't fall asleep while driving.  I still have bouts of depression as well.  I have had my levels checked, and been told that they are normal....I beg to differ.

     

    My husband actually started to do some research and led me to this site.  So far, I have learned I am not taking enough medicine for my weight...it's normal to gain weight ;-(, and I shouldn't be taking the generic brand of the synthroid medicine.  

     

    I am sure you have already done your homework, and exhausted all of your options so all I can offer is support and minor empathy.  Your family obviously loves you and are being very supportive.  It is a good thing that you are able to stop working financially to focus on your recovery.  Look at this as an opportunity to take stock...maybe take a couple of classes, start a second/less stressful or part time career from home?

    Good Luck!

    thanks dpeters72,
    My

    thanks dpeters72,

    My insurance gives me the generic.  I am coming up to my appointment with my endo I am going to see if he can demand I take the real deal.  I tried to talk with my GM yesterday but he left without sitting down with me.  Everyone saw how much I hurt.  I couldn't hide it in my face no matter how much I tried.  They kept asking if I was okay and I needed to cut back my hours.  I just kept saying I don't feel good and they kept pressing me what I wanted to talk to my gm about.  I just said I would rather not say until I talked with him out of respect of it getting back to him without talking to him.  He is on vacation now.  I am upset that he didn't take my request seriously because I felt it best to have this conversation with him before he left rather then him being blindsided when he comes back. I was willing to give him 6 weeks notice so that I could train my replacement and get the staff ready for this extremely busy season but I guess he doesn't care.  I have been really upfront with him about my immune system and being a cancer survivor and he promised me that I wouldn't be working crazy shifts and keep at under 25 hours so that I could rest. I work until most times 1 am.  It takes a toll on me. I am up at 6 am rather I go to bed at 2 or at 10. I have things I need to take care of.  I know my irons are extremely low because bruises and cuts are taking forever to heal.  I am going down like last time which I was bed ridden for 2 /2 months.  I am not going this route again.  I guess I will have to post my resignation letter and just let him find it because it is few and far between when I see him because of how he schedules me. I have to take my life and health back and if it means working on my organic garden and being purposesful for my family I feel that is a blessing.  I am growing all our crops and herbs and spices this year. So that I can dehydrate and dry to make soup misses salad dressing mixes and spice rubs to have thiem for the fall.  If the only thing this does is bless my family and friends then it is worth it.  I know it is organic non gmo because I did it myself!  It is time to get back to the basics. Soak up some natural vitamin D and reward my body with rest and purposeful chores instead of being stressed and sleep deprived. THanks for the enoucouragement and I am encouraged that I am not the only one being beat down with the after effects of this cancer.  They tell you it is 96% curable but the don't tell you the lifelong after effects of loosing your thyroid

     

  • flygirlc
    flygirlc Member Posts: 30 Member
    #4
    shesabutterfly2010 said:

    thanks dpeters72,
    My

    thanks dpeters72,

    My insurance gives me the generic.  I am coming up to my appointment with my endo I am going to see if he can demand I take the real deal.  I tried to talk with my GM yesterday but he left without sitting down with me.  Everyone saw how much I hurt.  I couldn't hide it in my face no matter how much I tried.  They kept asking if I was okay and I needed to cut back my hours.  I just kept saying I don't feel good and they kept pressing me what I wanted to talk to my gm about.  I just said I would rather not say until I talked with him out of respect of it getting back to him without talking to him.  He is on vacation now.  I am upset that he didn't take my request seriously because I felt it best to have this conversation with him before he left rather then him being blindsided when he comes back. I was willing to give him 6 weeks notice so that I could train my replacement and get the staff ready for this extremely busy season but I guess he doesn't care.  I have been really upfront with him about my immune system and being a cancer survivor and he promised me that I wouldn't be working crazy shifts and keep at under 25 hours so that I could rest. I work until most times 1 am.  It takes a toll on me. I am up at 6 am rather I go to bed at 2 or at 10. I have things I need to take care of.  I know my irons are extremely low because bruises and cuts are taking forever to heal.  I am going down like last time which I was bed ridden for 2 /2 months.  I am not going this route again.  I guess I will have to post my resignation letter and just let him find it because it is few and far between when I see him because of how he schedules me. I have to take my life and health back and if it means working on my organic garden and being purposesful for my family I feel that is a blessing.  I am growing all our crops and herbs and spices this year. So that I can dehydrate and dry to make soup misses salad dressing mixes and spice rubs to have thiem for the fall.  If the only thing this does is bless my family and friends then it is worth it.  I know it is organic non gmo because I did it myself!  It is time to get back to the basics. Soak up some natural vitamin D and reward my body with rest and purposeful chores instead of being stressed and sleep deprived. THanks for the enoucouragement and I am encouraged that I am not the only one being beat down with the after effects of this cancer.  They tell you it is 96% curable but the don't tell you the lifelong after effects of loosing your thyroid

     

    Generic vs name brand

    I'm sorry you're going through all this. Taking the name brand might or might not help. My endo insists on it in my case so my insurance pays for it. I just have a $5 higher co pay. According to my endo there are less inconsistancies in the levels of the hormone and more consistancy in the other filler ingredients. I had to try a couple brands and levels before we tried synthroid to prove to my insurance the generic didn't help. Synthroid got all my levels in the ranges my doctor wanted. I am assuming your endo checks your t3 and t4free as well as your tsh? Mine keeps me slightly hyper to keep my tsh levels down to try and prevent a reoccurance. I'm sorry you had to leave your job but hopefully some rest will help, sounds like you had crazy hours. Keep talking to your endo, they should be concerned with all these symptoms and hopefully try to help. Good luck to you.

     

  • Waynedoc
    Waynedoc Member Posts: 3
    #5
    shesabutterfly2010 said:

    thanks dpeters72,
    My

    thanks dpeters72,

    My insurance gives me the generic.  I am coming up to my appointment with my endo I am going to see if he can demand I take the real deal.  I tried to talk with my GM yesterday but he left without sitting down with me.  Everyone saw how much I hurt.  I couldn't hide it in my face no matter how much I tried.  They kept asking if I was okay and I needed to cut back my hours.  I just kept saying I don't feel good and they kept pressing me what I wanted to talk to my gm about.  I just said I would rather not say until I talked with him out of respect of it getting back to him without talking to him.  He is on vacation now.  I am upset that he didn't take my request seriously because I felt it best to have this conversation with him before he left rather then him being blindsided when he comes back. I was willing to give him 6 weeks notice so that I could train my replacement and get the staff ready for this extremely busy season but I guess he doesn't care.  I have been really upfront with him about my immune system and being a cancer survivor and he promised me that I wouldn't be working crazy shifts and keep at under 25 hours so that I could rest. I work until most times 1 am.  It takes a toll on me. I am up at 6 am rather I go to bed at 2 or at 10. I have things I need to take care of.  I know my irons are extremely low because bruises and cuts are taking forever to heal.  I am going down like last time which I was bed ridden for 2 /2 months.  I am not going this route again.  I guess I will have to post my resignation letter and just let him find it because it is few and far between when I see him because of how he schedules me. I have to take my life and health back and if it means working on my organic garden and being purposesful for my family I feel that is a blessing.  I am growing all our crops and herbs and spices this year. So that I can dehydrate and dry to make soup misses salad dressing mixes and spice rubs to have thiem for the fall.  If the only thing this does is bless my family and friends then it is worth it.  I know it is organic non gmo because I did it myself!  It is time to get back to the basics. Soak up some natural vitamin D and reward my body with rest and purposeful chores instead of being stressed and sleep deprived. THanks for the enoucouragement and I am encouraged that I am not the only one being beat down with the after effects of this cancer.  They tell you it is 96% curable but the don't tell you the lifelong after effects of loosing your thyroid

     

    Hi Shesabuterfly2010

    Oh my, you sure had an experience with your cancer. I had the same type of cancer phase 4 back in 2001. I had to quit my part time job because of pain/peripheral neuropathy/muscle cramping and exhaustion. I slept for about the first 3 years 18 hours a day after my cancer treatment. I gained 100 pounds. I had micro heart attacks. Other health stuff too. I am 14 years past treatment for cancer and I still have several lingering affects of the cancer or treatment for it. Enough tough news from me. I like your back to basics approach. That works best for me. I try to live withing what I can do each day. Accept my best effort daily. I gently work in the woods near my home to get my exercise and relax a bit each day. A good massage or whirlpool soak helps me deal with pain. In my experience with my cancer afteraffects, I have seen a reduction in the severity of my symptoms over the years. I had to start from nothing and work back to more activity. I was on a doctor supervised diet for 18 months to drop 125 pounds. Eating well and exercising modestly are wonderful to help recover. All the best to you on your path. You will make it. If I can do it, so can you. Peace....

  • Hope32
    Hope32 Member Posts: 1
    #6
    shesabutterfly2010 said:

    thanks dpeters72,
    My

    thanks dpeters72,

    My insurance gives me the generic.  I am coming up to my appointment with my endo I am going to see if he can demand I take the real deal.  I tried to talk with my GM yesterday but he left without sitting down with me.  Everyone saw how much I hurt.  I couldn't hide it in my face no matter how much I tried.  They kept asking if I was okay and I needed to cut back my hours.  I just kept saying I don't feel good and they kept pressing me what I wanted to talk to my gm about.  I just said I would rather not say until I talked with him out of respect of it getting back to him without talking to him.  He is on vacation now.  I am upset that he didn't take my request seriously because I felt it best to have this conversation with him before he left rather then him being blindsided when he comes back. I was willing to give him 6 weeks notice so that I could train my replacement and get the staff ready for this extremely busy season but I guess he doesn't care.  I have been really upfront with him about my immune system and being a cancer survivor and he promised me that I wouldn't be working crazy shifts and keep at under 25 hours so that I could rest. I work until most times 1 am.  It takes a toll on me. I am up at 6 am rather I go to bed at 2 or at 10. I have things I need to take care of.  I know my irons are extremely low because bruises and cuts are taking forever to heal.  I am going down like last time which I was bed ridden for 2 /2 months.  I am not going this route again.  I guess I will have to post my resignation letter and just let him find it because it is few and far between when I see him because of how he schedules me. I have to take my life and health back and if it means working on my organic garden and being purposesful for my family I feel that is a blessing.  I am growing all our crops and herbs and spices this year. So that I can dehydrate and dry to make soup misses salad dressing mixes and spice rubs to have thiem for the fall.  If the only thing this does is bless my family and friends then it is worth it.  I know it is organic non gmo because I did it myself!  It is time to get back to the basics. Soak up some natural vitamin D and reward my body with rest and purposeful chores instead of being stressed and sleep deprived. THanks for the enoucouragement and I am encouraged that I am not the only one being beat down with the after effects of this cancer.  They tell you it is 96% curable but the don't tell you the lifelong after effects of loosing your thyroid

     

    I know exactly how you feel.

    I know exactly how you feel. I was diagnosed in February 2013 with a aggressive tyroid cancer. So my year kind of went like this. I found out in 2012 that I was having a problem eating my doctor sent me in to get a ultrasound and they found growth on my tyroid. They sent me to go have a biopsies which they almost didn't do cause the ultrasound was not pulling up well but then knowing my family history they said no we need to do this. The pulled out several samples and then the pathologist came in and diagnosed me right there she also was worried about a few peices and had them sent off and results back really quickly. My doctor calls a few days later and says I need you to come in tomorrow and then he tells me I have a aggressive gene and I will have to have surgery in a week. Since the surgery I have not been able to get back to who I really am and I really hate it. my first month I got to take 25 mcg a day. I lost lots of hair, gained weight, dry skin, depression just a bunch of horriable pain. Then the doctors took me off completly to prepare me for Radiation, after about a month and a half went by they finally got me in. I was very weak felt like I was dying slowly, my husband would have to hold me cause I didn't want go to sleep I couldn't use the restroom and he would have to wake me up cause I could sleep all day all night and it would scare him. There were many more things to add to all that on how my body felt. I finally got to do my radiation and when the doctor said I could take my meds at a higher dose well I was like a kid with a Popsicle. Slowly I got energy back but just felt like I was not in my body I had before. I would get sick easy, gained weight, depression, anxious, couldn't sleep, hair felt bridal, could not use the restroom and pain. It has been a little over a year now and I feel like I don't even know who I am, I get agitated quickly, I don't handle stress well, my energy is high and low I don't sleep well I was taking bupropian and Xanax to control some these things but I didn't how I was feeling with those meds. I don't ill taking a pill for the rest of my life but to take three sucked. I am trying to lean on god and pray for strength to overcome this, but I think I need to come to exceptance. I work hard but I have to push myself and I get tired and my body hurts. though I hope one day I can feel close to what I felt before this. Cause I don't like the new me.

  • GoldieK
    GoldieK Member Posts: 1
    #7
    Hope32 said:

    I know exactly how you feel.

    I know exactly how you feel. I was diagnosed in February 2013 with a aggressive tyroid cancer. So my year kind of went like this. I found out in 2012 that I was having a problem eating my doctor sent me in to get a ultrasound and they found growth on my tyroid. They sent me to go have a biopsies which they almost didn't do cause the ultrasound was not pulling up well but then knowing my family history they said no we need to do this. The pulled out several samples and then the pathologist came in and diagnosed me right there she also was worried about a few peices and had them sent off and results back really quickly. My doctor calls a few days later and says I need you to come in tomorrow and then he tells me I have a aggressive gene and I will have to have surgery in a week. Since the surgery I have not been able to get back to who I really am and I really hate it. my first month I got to take 25 mcg a day. I lost lots of hair, gained weight, dry skin, depression just a bunch of horriable pain. Then the doctors took me off completly to prepare me for Radiation, after about a month and a half went by they finally got me in. I was very weak felt like I was dying slowly, my husband would have to hold me cause I didn't want go to sleep I couldn't use the restroom and he would have to wake me up cause I could sleep all day all night and it would scare him. There were many more things to add to all that on how my body felt. I finally got to do my radiation and when the doctor said I could take my meds at a higher dose well I was like a kid with a Popsicle. Slowly I got energy back but just felt like I was not in my body I had before. I would get sick easy, gained weight, depression, anxious, couldn't sleep, hair felt bridal, could not use the restroom and pain. It has been a little over a year now and I feel like I don't even know who I am, I get agitated quickly, I don't handle stress well, my energy is high and low I don't sleep well I was taking bupropian and Xanax to control some these things but I didn't how I was feeling with those meds. I don't ill taking a pill for the rest of my life but to take three sucked. I am trying to lean on god and pray for strength to overcome this, but I think I need to come to exceptance. I work hard but I have to push myself and I get tired and my body hurts. though I hope one day I can feel close to what I felt before this. Cause I don't like the new me.

    Hugs to all fellow thyroid cancer survivors!

    Just had I-131 treatment this afternoon, after complete throidectomy two months ago. Two papillary cancer nodules, rather large. Waiting to see how the next week goes. I was lucky to not be bothered by the two weeks on low iodine diet, nor to get fatigued when they took me off thyroxin. Waiting to see what side effects show up from today's treatment and down the road. My Nuclear Medicine Specialist agreed to monitor blood levels for now, and that was great news as I have much confidence in him. The main tip I would like to share with all of you is to look for a nearby Cancer Community ( used to be called Wellness Commnity or Gilda's Clubhouse.) What an amazing support group for all cancers- and totally FREE. Ours offers 250 free classes/programs every month. I've gone for three weeks now, and it has really boosted my hope that I WILL beat this cancer.  I am in a cancer support group, guided imagery class, have tried yoga, will try tai-chi soon. Several useful programs on different aspects of living with cancer. Everything is really helping me survive and live well. While in the hosipital for the surgery, several other life-threatening illneses were diagnosed, such as diabetes, so I am not taking any of this lightly. There are great books, too, for living well with cancer. Perhaps start with one by oncologist Bernie Siegel, and go from there.

  • beautifulbabyg
    beautifulbabyg Member Posts: 3
    #8
    GoldieK said:

    Hugs to all fellow thyroid cancer survivors!

    Just had I-131 treatment this afternoon, after complete throidectomy two months ago. Two papillary cancer nodules, rather large. Waiting to see how the next week goes. I was lucky to not be bothered by the two weeks on low iodine diet, nor to get fatigued when they took me off thyroxin. Waiting to see what side effects show up from today's treatment and down the road. My Nuclear Medicine Specialist agreed to monitor blood levels for now, and that was great news as I have much confidence in him. The main tip I would like to share with all of you is to look for a nearby Cancer Community ( used to be called Wellness Commnity or Gilda's Clubhouse.) What an amazing support group for all cancers- and totally FREE. Ours offers 250 free classes/programs every month. I've gone for three weeks now, and it has really boosted my hope that I WILL beat this cancer.  I am in a cancer support group, guided imagery class, have tried yoga, will try tai-chi soon. Several useful programs on different aspects of living with cancer. Everything is really helping me survive and live well. While in the hosipital for the surgery, several other life-threatening illneses were diagnosed, such as diabetes, so I am not taking any of this lightly. There are great books, too, for living well with cancer. Perhaps start with one by oncologist Bernie Siegel, and go from there.

    Glad Im not alone

    I hate to say that I am glad I am not alone because that means other have had to go through this, but its also nice to know I am not the only one experiencing issues. I just recently went through my surgery in Aug. Had a total removeal, results came back with a combo of papillary & follicular. I see my Dr tomorrow to find out about further treatment.. This is a world to me, I have always been the one to take care of everyone not needing people to take care of me. I have been trying very hard to hide my hair thinning, being tired, aches, and everything else that's been happening. I have always been super woman in my family and at work, dislike feeling as if I can't be counted on. I really miss the old me, its was and is still so unreal to say I have/had cancer.Frown

  • bdenny1954
    bdenny1954 Member Posts: 6
    #9
    beautifulbabyg said:

    Glad Im not alone

    I hate to say that I am glad I am not alone because that means other have had to go through this, but its also nice to know I am not the only one experiencing issues. I just recently went through my surgery in Aug. Had a total removeal, results came back with a combo of papillary & follicular. I see my Dr tomorrow to find out about further treatment.. This is a world to me, I have always been the one to take care of everyone not needing people to take care of me. I have been trying very hard to hide my hair thinning, being tired, aches, and everything else that's been happening. I have always been super woman in my family and at work, dislike feeling as if I can't be counted on. I really miss the old me, its was and is still so unreal to say I have/had cancer.Frown

    not alone

     just wanted to drop a line and say hi. i have like you been a superman to my family over the years but not so much anymore.i developed tiredness,shortness of breath,body aches,and i smell unusual odors like plastic melting smells that just pop up out of nowhere.it is not very pleasant when this happens. i have never heard of anyone else but one person this is happening to.i had my total thyroidectomy last january6th.been a year now.sense of taste is a little different but much better.i do hope you are doing better now since it has been around 5 months for you.let us know how you are.God bless and take careSmile

     

  • tom.destio@gmail.com
    tom.destio@gmail.com Member Posts: 2
    #10
    Are you doing any better?

    I had half my thyroid removed,now I have TCV....3 nodes removed and a 2 parathyroid.  I am not looking forward to the future.

     

    I am onwner of a bussiness and I  teachspin four times a week.   I am trying to stay as active as possable.  I get very tied sometimes and also depressed.  But I am doing my best to stay positive.

  • siljune2015
    siljune2015 Member Posts: 4
    #11
    dpeters72 said:

    Empathy

    Dear Struggling,

    Oh My Goodness!  I feel for you.  How awful!  I, too, am struggling with my recovery, but not nearly as severely as you are.  I am suffering migraines, weight gain, insomnia, constant exhaustion, and am always cold.  I keep a blanket at work to wrap up in, and often end up calling ppl on my drive home from work so I don't fall asleep while driving.  I still have bouts of depression as well.  I have had my levels checked, and been told that they are normal....I beg to differ.

     

    My husband actually started to do some research and led me to this site.  So far, I have learned I am not taking enough medicine for my weight...it's normal to gain weight ;-(, and I shouldn't be taking the generic brand of the synthroid medicine.  

     

    I am sure you have already done your homework, and exhausted all of your options so all I can offer is support and minor empathy.  Your family obviously loves you and are being very supportive.  It is a good thing that you are able to stop working financially to focus on your recovery.  Look at this as an opportunity to take stock...maybe take a couple of classes, start a second/less stressful or part time career from home?

    Good Luck!

    side affects

    https://www.facebook.com/groups/1701855593371757/

     

     

     

     

    Most of the symptoms are side affetcs of the synthroid, generic or not. and some times T4 is not converting to T3 so T3 haver to be add

  • siljune2015
    siljune2015 Member Posts: 4
    #12
    tom.destio@gmail.com said:

    Are you doing any better?

    I had half my thyroid removed,now I have TCV....3 nodes removed and a 2 parathyroid.  I am not looking forward to the future.

     

    I am onwner of a bussiness and I  teachspin four times a week.   I am trying to stay as active as possable.  I get very tied sometimes and also depressed.  But I am doing my best to stay positive.

    I feel what you feel :)

    I have had all the symptoms you described before and tired and weak all the time, also depressed. i checked my levels and they were kinda low, specially T# so i ask my doctor to add Cytomel, i start with mg a day and jump to 10mg a day, it's helping already i don;t feel that bad anymore. and i'm also looking forward to go back to work as soon as it's possible :)

     

    https://www.facebook.com/groups/1701855593371757/

     

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