Am I alone?

ameliarose34
ameliarose34 Member Posts: 3
edited March 2014 in Thyroid Cancer #1
I'm 34 F who is still trying to recover from the day as I say "the doctor's took out my soul"...............I'm just not the person I use to be, and It's killing not only me, but my personally life and relationship........HELP
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Comments

  • megalodean
    megalodean Member Posts: 4
    #2
    I feel your pain
    I feel like we are in the same boat. I'm 18 year old female. Feeling totally different than i use to be before all of this. Not all in bad ways but sometimes I do not recognize myself anymore. Lost my boyfriend about a week ago because of it. We tried working through it but he says I'm a stranger to him now. It hurts. I think that I am finally starting to work through some of it but it isn't an easy thing. Its especially hard because people do not see/possibly know what we are going through and how we are feeling. This kind of sick isnt seen as clearly as a bad cough or a runny nose. We will work through it though!!
  • cjsgirl025
    cjsgirl025 Member Posts: 2
    #3
    You are not alone!
    You are definitely not alone I completely understand how you feel! I'm 25F and had my thryiod removed almost two years ago due to papillary cancer. There are days when I wish that they never removed it. I feel like a completely different person, almost like I lost the person I used to be. I'm married with three small children and it has really affected my family. My advise is to find a good doctor that will actually listen to you and not look at you like you are crazy. Are talk to someone that can understand what you are going through. I still have not found a good doctor. My doctor has told me that I need to see a physiatrist and that maybe I was depressed. When I had posted something on here I got the same response. But I'm not depressed it's just really hard to try to explain the way I feel to someone that has absolutely no idea how I feel. Good luck and if you need someone to talk to I will give you my email address. If you can find out what is the problem let me know I'm still searching for answers!!!
  • Waynedoc
    Waynedoc Member Posts: 3
    #4
    Hi
    How long ago did they remove your Thyroid? Thyroid hormone level correct and nutrition ( lots of veggies ) and reasonable exercise helped me. I am certainly not the same person that I was before. Everyone around me has to be patient with me now. I am doing better. I am getting to like the new me and so are my friends and family. Hang in there!!
  • SuziSuz
    SuziSuz Member Posts: 3
    #5
    Feeling Different after thyroidectomy
    I'm going on my 4th year post total thyroidectomy. Do I feel different ?! Just ask my family! Initially I was taking 2-4 naps per day. Energy level was zero. Now that my levothyroxine is at a therapeutic level, I am feeling better. But I will tell you what really helped: VITAMINS!
    I actually saw a holistic doctor who suggested that taking synthetic thyroid medicine did not allow the body to convert your T3 into T4,
    (or vise versa, I can't remember) Anyways, he suggested I start taking a vitamin called "Cataplex C" which helps metabolize the thyroid medicine properly and also stimulates your adrenal glands. (For anyone who is extremely tired, adrenal exhaustion may also be the cause.) I also take seaweed capsules. Another vitamin that is reputable, (sold only through pharmacists and doctors) is: Metagenics. There are many aspects to "getting your mojo back". Taking a multidisciplinary approach may be helpful. Your thyroid doctor may have tunnel vision, and may not be open to seeing the whole picture. Keep searching, and you WILL find something that will help. Keep searching and keep asking people for referrals and tips. Take care.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #6
    You are NOT alone
    I had my thyroid out six years ago. It affected me both physically and emotionally. It has affected my libido, my mood, my physical sense of well-being, pretty much everything. It's hard on both me and my family.

    What's the hardest for me, is that no one knows what I'm going through except others that are facing the same thing. I feel like I live with this seed of doubt all the time. Will it come back again? Is it really gone? Why me? So many questions I can't answer, no one can. And if I choose to ignore all the questions and believe I'm cured, I feel like I'm living in denial, because it has come back, twice now. So how do I balance this all and stay sane? It's so hard.

    Just try to stay positive. I think it's been my saving grace. I just look at it like, in the words of my favorite band Fuel - I won't back down, I will not bow. You have to take it head on and believe you will beat it, no matter how many times it comes knocking at your door.
  • leahs25
    leahs25 Member Posts: 5
    #7
    SuziSuz said:

    Feeling Different after thyroidectomy
    I'm going on my 4th year post total thyroidectomy. Do I feel different ?! Just ask my family! Initially I was taking 2-4 naps per day. Energy level was zero. Now that my levothyroxine is at a therapeutic level, I am feeling better. But I will tell you what really helped: VITAMINS!
    I actually saw a holistic doctor who suggested that taking synthetic thyroid medicine did not allow the body to convert your T3 into T4,
    (or vise versa, I can't remember) Anyways, he suggested I start taking a vitamin called "Cataplex C" which helps metabolize the thyroid medicine properly and also stimulates your adrenal glands. (For anyone who is extremely tired, adrenal exhaustion may also be the cause.) I also take seaweed capsules. Another vitamin that is reputable, (sold only through pharmacists and doctors) is: Metagenics. There are many aspects to "getting your mojo back". Taking a multidisciplinary approach may be helpful. Your thyroid doctor may have tunnel vision, and may not be open to seeing the whole picture. Keep searching, and you WILL find something that will help. Keep searching and keep asking people for referrals and tips. Take care.

    Leah
    I agree, I was feeling really depressed latley and a friend who is a naturalpathic DR sugessted I take a probiotic along with upping my Vit D and Calcium, which has helped a lot. I sometimes feel different which makes me very frusrated, This is my first time on a chat board, and this is my first post. I had some dental work done last week, which really knocked me out, the dentist said two three days, im going on day 7 and have still not recovered. I think for me accepting the fact that I had thyroid and that now i have to deal with things differently has made a big change. I was very very active before and recovered from illness quickly, bounced back, and now i cannot get back to norm, my endocrynologist said, normal is a new normal and I just need to learn how to be this normal. At least I dont have cancer anymore right.
  • bribeauty25
    bribeauty25 Member Posts: 10
    #8
    cjsgirl025 said:

    You are not alone!
    You are definitely not alone I completely understand how you feel! I'm 25F and had my thryiod removed almost two years ago due to papillary cancer. There are days when I wish that they never removed it. I feel like a completely different person, almost like I lost the person I used to be. I'm married with three small children and it has really affected my family. My advise is to find a good doctor that will actually listen to you and not look at you like you are crazy. Are talk to someone that can understand what you are going through. I still have not found a good doctor. My doctor has told me that I need to see a physiatrist and that maybe I was depressed. When I had posted something on here I got the same response. But I'm not depressed it's just really hard to try to explain the way I feel to someone that has absolutely no idea how I feel. Good luck and if you need someone to talk to I will give you my email address. If you can find out what is the problem let me know I'm still searching for answers!!!

    I got the You are depressed
    I got the You are depressed thing before anyone would listen to me that something was wrong with my thyroid. Your thyroid hormone levels can make you depressed and affect your mood!! My surgeon compared the thyroid to a conductor of an orchestra. It is that important, and the trick will be to find a doc who will listen to how you feel as well as what the test results say.
    I have not started the hormone replacement yet as I am awaiting the radioactive iodine treatment.
    I know how you feel....when no one wants to listen you almost feel like maybe their right. But if I have learned anything so far it is you know your body the best and don't let someone even a doctor tell you how you feel.
    I have been feeling quite depressed as well. Being told you have cancer, even if it is removed, changes your life! I feel like my family is not understanding what I am going through emotionally. They are kind of like you don't have it anymore so you should be happy...or the doctor told me it's the best cancer to have....LET ME GREIVE!
    We will get through this!! It is hard to be postitive 100% of the time, but I guess we can strive for that. If it doesn't happen today there is always tomorrow. :)
  • bribeauty25
    bribeauty25 Member Posts: 10
    #9
    SuziSuz said:

    Feeling Different after thyroidectomy
    I'm going on my 4th year post total thyroidectomy. Do I feel different ?! Just ask my family! Initially I was taking 2-4 naps per day. Energy level was zero. Now that my levothyroxine is at a therapeutic level, I am feeling better. But I will tell you what really helped: VITAMINS!
    I actually saw a holistic doctor who suggested that taking synthetic thyroid medicine did not allow the body to convert your T3 into T4,
    (or vise versa, I can't remember) Anyways, he suggested I start taking a vitamin called "Cataplex C" which helps metabolize the thyroid medicine properly and also stimulates your adrenal glands. (For anyone who is extremely tired, adrenal exhaustion may also be the cause.) I also take seaweed capsules. Another vitamin that is reputable, (sold only through pharmacists and doctors) is: Metagenics. There are many aspects to "getting your mojo back". Taking a multidisciplinary approach may be helpful. Your thyroid doctor may have tunnel vision, and may not be open to seeing the whole picture. Keep searching, and you WILL find something that will help. Keep searching and keep asking people for referrals and tips. Take care.

    Thank you for your post!
    Thank you for your post! that helped me and I will be looking into those vitamins. I definately think doctors have tunnel vision like a script is the only thing that could help...anyways thanks again!
  • ima_survivor
    ima_survivor Member Posts: 6
    #10
    SuziSuz said:

    Feeling Different after thyroidectomy
    I'm going on my 4th year post total thyroidectomy. Do I feel different ?! Just ask my family! Initially I was taking 2-4 naps per day. Energy level was zero. Now that my levothyroxine is at a therapeutic level, I am feeling better. But I will tell you what really helped: VITAMINS!
    I actually saw a holistic doctor who suggested that taking synthetic thyroid medicine did not allow the body to convert your T3 into T4,
    (or vise versa, I can't remember) Anyways, he suggested I start taking a vitamin called "Cataplex C" which helps metabolize the thyroid medicine properly and also stimulates your adrenal glands. (For anyone who is extremely tired, adrenal exhaustion may also be the cause.) I also take seaweed capsules. Another vitamin that is reputable, (sold only through pharmacists and doctors) is: Metagenics. There are many aspects to "getting your mojo back". Taking a multidisciplinary approach may be helpful. Your thyroid doctor may have tunnel vision, and may not be open to seeing the whole picture. Keep searching, and you WILL find something that will help. Keep searching and keep asking people for referrals and tips. Take care.

    SUZISUZ-
    Are you just taking the holistic medicines alone or in conjuction with your thyroid hormone replacement? I would really like to know!:)
  • ima_survivor
    ima_survivor Member Posts: 6
    #11
    BellsAngel69 said:

    You are NOT alone
    I had my thyroid out six years ago. It affected me both physically and emotionally. It has affected my libido, my mood, my physical sense of well-being, pretty much everything. It's hard on both me and my family.

    What's the hardest for me, is that no one knows what I'm going through except others that are facing the same thing. I feel like I live with this seed of doubt all the time. Will it come back again? Is it really gone? Why me? So many questions I can't answer, no one can. And if I choose to ignore all the questions and believe I'm cured, I feel like I'm living in denial, because it has come back, twice now. So how do I balance this all and stay sane? It's so hard.

    Just try to stay positive. I think it's been my saving grace. I just look at it like, in the words of my favorite band Fuel - I won't back down, I will not bow. You have to take it head on and believe you will beat it, no matter how many times it comes knocking at your door.

    BELLSANGEL-
    Ok so your post just made me teary eyed!! My cancer has also come back twice, and I had my thoughts of doubt and why me and the why even keep doing the RAI-131. At that time everyone was telling me I would be fine and it's the best cancer to have. But come on, there's a breaking point here!! Reguardless if it's a "good" cancer, it's cancer, and it's scary and hard to deal with. I just wanted to say thank you though, although I now have a better perspective on the matter there are times where I just can't bear it anymore, and I'm pretty sure that's normal ;)
  • Perstephanie
    Perstephanie Member Posts: 26
    #12
    I already lost my
    I already lost my relationship over this - boyfriend broke up with me, and while he wouldn't say it's why, the reasons basically boil down to my Hashimoto's and thyroid cancer. If you're on Synthroid and it isn't working, find a doctor who will try Cytomel, or help you get natural dessicated thyroid hormone from Canada (Armour is one of the examples), or tweak your desage, or whatever you have to. I'm miserable and exhausted and not myself and I haven't even had surgery yet. I really really really do not want to.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #13
    ima_survivor said:

    BELLSANGEL-
    Ok so your post just made me teary eyed!! My cancer has also come back twice, and I had my thoughts of doubt and why me and the why even keep doing the RAI-131. At that time everyone was telling me I would be fine and it's the best cancer to have. But come on, there's a breaking point here!! Reguardless if it's a "good" cancer, it's cancer, and it's scary and hard to deal with. I just wanted to say thank you though, although I now have a better perspective on the matter there are times where I just can't bear it anymore, and I'm pretty sure that's normal ;)

    ima_survivor
    I'm glad you connected to my feelings. I'm so glad I found this place. I've been dealing with this for six years, and never came upon this site until about a month ago. I feel so much better knowing I have a place to come to to share my feelings, get information, commiserate and rejoice. There are so many highs and lows, and I think the key is to learn how to balance them, although at times, as we all know, it can get the better of us. We are human, after all, and aren't made of stone.

    As far as the "It's only thyroid cancer, it's the best kind to get"? I could shoot every damn doctor who tells us that. As you said, cancer is cancer, no matter what kind. Like we were shopping for a brand and chose thyroid. They want to give us hope because it is one of the most curable/manageable types, but it's still cancer and can come back. I think that's something they tend to downplay. Our prognosis is 99% curable, but the truth is, we'll probably never be free from it.

    If you want to talk via email, I'd love to. My email is: rorick@frontiernet.net and my name is Patti.
  • Perstephanie
    Perstephanie Member Posts: 26
    #14
    BellsAngel69 said:

    ima_survivor
    I'm glad you connected to my feelings. I'm so glad I found this place. I've been dealing with this for six years, and never came upon this site until about a month ago. I feel so much better knowing I have a place to come to to share my feelings, get information, commiserate and rejoice. There are so many highs and lows, and I think the key is to learn how to balance them, although at times, as we all know, it can get the better of us. We are human, after all, and aren't made of stone.

    As far as the "It's only thyroid cancer, it's the best kind to get"? I could shoot every damn doctor who tells us that. As you said, cancer is cancer, no matter what kind. Like we were shopping for a brand and chose thyroid. They want to give us hope because it is one of the most curable/manageable types, but it's still cancer and can come back. I think that's something they tend to downplay. Our prognosis is 99% curable, but the truth is, we'll probably never be free from it.

    If you want to talk via email, I'd love to. My email is: rorick@frontiernet.net and my name is Patti.

    this is the cancer to get
    Oh, man, every single freaking time someone tells me all about how I got the "good" cancer, it 1. makes me feel like I have fake cancer and shouldn't go to any of the cancer patient/survivor stuff available in my area because I feel dumb when other people have such worse conditions, but 2. makes me want to throttle them. If it's such a great cancer to have, they are welcome to it, because it hasn't been making my life any easier.
  • IowaBo
    IowaBo Member Posts: 32
    #15
    Perstephanie said:

    this is the cancer to get
    Oh, man, every single freaking time someone tells me all about how I got the "good" cancer, it 1. makes me feel like I have fake cancer and shouldn't go to any of the cancer patient/survivor stuff available in my area because I feel dumb when other people have such worse conditions, but 2. makes me want to throttle them. If it's such a great cancer to have, they are welcome to it, because it hasn't been making my life any easier.

    This is exactly how I feel.
    This is exactly how I feel. I don't even feel comfortable saying the words "I have cancer" I hope it's gone! I have my RAI on the 17th. I'm doing the diet now.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #16
    Perstephanie said:

    I already lost my
    I already lost my relationship over this - boyfriend broke up with me, and while he wouldn't say it's why, the reasons basically boil down to my Hashimoto's and thyroid cancer. If you're on Synthroid and it isn't working, find a doctor who will try Cytomel, or help you get natural dessicated thyroid hormone from Canada (Armour is one of the examples), or tweak your desage, or whatever you have to. I'm miserable and exhausted and not myself and I haven't even had surgery yet. I really really really do not want to.

    Hang in there
    I'm sorry you're feeling so badly, both emotionally and physically. Do you have anyone for support? Family, friends? You need that right now, and always just to keep sane. It's a tough road, but if you surround yourself by those closest to you, they will carry you through. I don't know if you're religious or not, but I find myself going back to my faith again for strength.

    Just keep this in mind, surgery might actually make you feel so much better. You may have some side effects, maybe not, but I believe after surgery and they have your meds right, you will feel so much better. It does take a while, but it does get better.

    Keep your head to the sky because the sun will shine again!!! Just gotta poke your heads through the clouds!!
  • Anna82
    Anna82 Member Posts: 4
    #17
    I feel the same way. I am 28
    I feel the same way. I am 28 and was diagnosed with Papillary Thyroid Carcinoma - follicular variant on December 2009. Since then I have had a total thyroidectomy and am now on the low iodine diet awaiting RAI. When I found out the mixture of feelings was overwhelming. I could not feel bad because it was a "good" cancer and I could not feel good because it is cancer just the same. I was numb and could not feel because of this until one day I just broke down. I think I needed to allow myself to cry. Now I don't really cry I'm just sad all the time. I am NOT the person I was before. I use to be the person that was the center of attention and always happy. I would sing and enjoy the radio. I LOVED music. And now, I have not even turned on the radio since the diagnosis. I hate the person I am now. I am always miserable and rarely smile. And, no one around me understands. They just keep saying that it will be okay. And that makes me feel guilty for being sad, and that makes me sadder. I am on an emotional ledge and anything can push me off. I get upset with people easily. In addition, I am going to vet school and don't know how much longer I can keep going. It took me 4 years to get here and now I may have to quit. I feel like no one understands me.
  • Leeland51
    Leeland51 Member Posts: 7
    #18
    Anna82 said:

    I feel the same way. I am 28
    I feel the same way. I am 28 and was diagnosed with Papillary Thyroid Carcinoma - follicular variant on December 2009. Since then I have had a total thyroidectomy and am now on the low iodine diet awaiting RAI. When I found out the mixture of feelings was overwhelming. I could not feel bad because it was a "good" cancer and I could not feel good because it is cancer just the same. I was numb and could not feel because of this until one day I just broke down. I think I needed to allow myself to cry. Now I don't really cry I'm just sad all the time. I am NOT the person I was before. I use to be the person that was the center of attention and always happy. I would sing and enjoy the radio. I LOVED music. And now, I have not even turned on the radio since the diagnosis. I hate the person I am now. I am always miserable and rarely smile. And, no one around me understands. They just keep saying that it will be okay. And that makes me feel guilty for being sad, and that makes me sadder. I am on an emotional ledge and anything can push me off. I get upset with people easily. In addition, I am going to vet school and don't know how much longer I can keep going. It took me 4 years to get here and now I may have to quit. I feel like no one understands me.

    Diagnosed 3/1/10 - 59DF - Afraid Vitamins Seafood 2nd Surgery
    Anna82, I just read your post--I am so sorry about your schooling. Will they let you take a "leave" and return when things are stabilized? I'm doing that with a class I'm taking. I'm going in for 2nd surgery 4/12/10; and then when I recuperate from that--by June or July--I'll have to do the RAI. I hope you have recuperated from all of that by now. I'm hoping I can put it off until July--the RAI--I work in education. I'm still recuperating from the 1st surgery. Something interesting--looking back three years--I was tired then. I went through a divorce--and I remember saying to myself--I just am too tired to fight to keep it (the marriage)together anymore--I just wanted peace and quiet, and rest. He still had a lot of energy and a lot of dreams and a real risk taker--and I just wanted a nap. Libido--I thought I lost that because of menopause/hysterectomy--could it be that thyroid nodule w/papillary cancer had something to do with that fading away as well? Now I'm afraid to take any vitamins that have a lot of iodine; I'm afraid to eat tuna or salmon or shrimp--will that over work the half thyroid I have left? I took Centrum Silver for the past 5 years--it has like 150 something of iodine--I haven't taken any of that--would it overwork my 1/2 thyroid? What can I take? What should I take before this 2nd surgery?
  • WhoDatFan
    WhoDatFan Member Posts: 4
    #19
    Leeland51 said:

    Diagnosed 3/1/10 - 59DF - Afraid Vitamins Seafood 2nd Surgery
    Anna82, I just read your post--I am so sorry about your schooling. Will they let you take a "leave" and return when things are stabilized? I'm doing that with a class I'm taking. I'm going in for 2nd surgery 4/12/10; and then when I recuperate from that--by June or July--I'll have to do the RAI. I hope you have recuperated from all of that by now. I'm hoping I can put it off until July--the RAI--I work in education. I'm still recuperating from the 1st surgery. Something interesting--looking back three years--I was tired then. I went through a divorce--and I remember saying to myself--I just am too tired to fight to keep it (the marriage)together anymore--I just wanted peace and quiet, and rest. He still had a lot of energy and a lot of dreams and a real risk taker--and I just wanted a nap. Libido--I thought I lost that because of menopause/hysterectomy--could it be that thyroid nodule w/papillary cancer had something to do with that fading away as well? Now I'm afraid to take any vitamins that have a lot of iodine; I'm afraid to eat tuna or salmon or shrimp--will that over work the half thyroid I have left? I took Centrum Silver for the past 5 years--it has like 150 something of iodine--I haven't taken any of that--would it overwork my 1/2 thyroid? What can I take? What should I take before this 2nd surgery?

    Its been 9 months now since
    Its been 9 months now since my surgery and I'm still feeling the emotional effects...I get agitated very easily and have been so deppressed that I don't even want to hang out with my friends or family. In addition to the thyroidectemy, I also had to have 88 lymph nodes removed leaving with a scar from ear to ear. I recently broke up with my girlfriend of 2 years in December becasue I couldn't handle the stress of being in a relationship or her seeing me depressed all the time. Now I even feel more lonely and just wish that I could take it all back...I'm optimistic that things will get better once my TSH levels are normal but it probably won't be for another 3-4 months. I'm 23 in nursing school and graduate in Decemeber--I should be excited and enjoying life but I find myself scared of the future. I believe everything happens for a reason, but I just can't find anything good out of this yet...the only positive has been sharing my experience with my patients in clinical and offering hope to them. Hopefully things will get better...I guess I just have to take it one day at atime.
  • 4butterfly
    4butterfly Member Posts: 4
    #20
    No you're not alone, I'm 34
    No you're not alone, I'm 34 as well. My world came crashing down 2 months ago when I heard, "I"m sorry its thyroid cancer" At first I felt shock and numb, then angry, now sad and disbelief. I feel like I do better when I'm around people, my family and good friends. I think what we are feeling is normal. How long has it been for you?
  • weberdns
    weberdns Member Posts: 154
    #21
    4butterfly said:

    No you're not alone, I'm 34
    No you're not alone, I'm 34 as well. My world came crashing down 2 months ago when I heard, "I"m sorry its thyroid cancer" At first I felt shock and numb, then angry, now sad and disbelief. I feel like I do better when I'm around people, my family and good friends. I think what we are feeling is normal. How long has it been for you?

    Nope you are not alone
    I'm 49. A nurse and learned March 10'th that I had Hurthle Cell Cancer. We went from having the "best kind of cancer" to a moderate/high risk. I am having my RI treatment on the 26'th. A body scan before and after the RI. Some days I cry....for the first couple of weeks I needed sleeping pills to sleep. If the stress gets too much some days I explode and just cry. My family members are stressed. I've had some pastoral counseling, been reaching out to friends and letting them know the news, and asking for prayers! I believe the power of prayer, and by getting more people involved I am getting the support I need as well as educating them about Thyroid cancer. I still fear for my future....and my life. I have a 19 year old and a 14 year old, and fear what this illness is doing to them.

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