tired and scared

amyrhona
amyrhona Member Posts: 10
edited March 2014 in Thyroid Cancer #1
I was 31 years old in 2006 when I was diagnosed with an aggressive variant of papillary-follicular thyroid cancer. I had tons of surgery and RAI. They also found out that I had Hashimodo's Thyroiditis when they took my thyroid out. What this means to me today is that I have antibodies against thyroglobulin so my thyroglobulin levels always read zero so we can't go off of bloodwork to see if my cancer is back. I have to get radioactive iodine scans every year instead. My last one was positive for spreading to the brain and I had to hear the news that my cancer was not gone and it was now in my brain. Well, after more scans, they found out that it WASN'T in my brain and said that the first scan was "contaminated", whatever that means. So, they sent me home and since all of this I have gone through a divorce and gone back to work full time. I can barely function I am so tired but my last TSH was fine. My endocrinologist said I have cancer-related chronic fatigue syndrome. I don't know anything about this and don't really believe him. I think I am just still recovering from a horrible few years of being very sick. Recently I have been trying to find statistics on recurrance rates of people who had the variant I did. I feel so sick still. Did anyone else have such a hard time recovering from their treatments? It's 2008 and I still am recovering I think!

Comments

  • gailaj
    gailaj Member Posts: 36
    #2
    Hello Amy,
    I just read this other post, and just wanted to say I'm so sorry you're still suffering and hope that your endo and others can help you to feel better. Sounds like you had so much stress on top of your diagnoses and treatment...you must be a very strong person to have gone through all of that. PS. I also have/had Hashimoto's and my antibodies are still up, so I may have to get a scan eventually too (even though I did not originally have to do RAI), as the thyroglobulin test als seems useless in my case too. It sure doesn't make it any easier.
  • amyrhona
    amyrhona Member Posts: 10
    #3
    gailaj said:

    Hello Amy,
    I just read this other post, and just wanted to say I'm so sorry you're still suffering and hope that your endo and others can help you to feel better. Sounds like you had so much stress on top of your diagnoses and treatment...you must be a very strong person to have gone through all of that. PS. I also have/had Hashimoto's and my antibodies are still up, so I may have to get a scan eventually too (even though I did not originally have to do RAI), as the thyroglobulin test als seems useless in my case too. It sure doesn't make it any easier.

    thanks for writing me. I am so lonely. I appreciate it. Sorry you have antibodies, too. scans suck when you know you could otherwise just have bloodwork. I just had more bloodwork done yesterday because I just found out my most recent bloodwork DID have thyroglobulin levels in it AND high levels of antibodies. I think this means I must have some thyroid cells left somewhere in my body that my antibodies haven't gotten to yet. So my doctor is re-testing me. Maybe that's why I feel so crappy. Maybe my cancer is back. I can't figure out why I would have a thyroglobulin reading, even though it was very low, if I have so many antibodies? Well, I hope more people write me. I am supposed to be getting a one-on-one volunteer, also, that will call me. I am so depressed and anxious most of the time, now. I also have an appointment Monday with an oncologist/psychiatrist at the major cancer center in my area (Atlanta). I am VERY excited about this appointment! I can't wait to talk to a mental health professional who only works with cancer patients. Maybe he can get a handle on all this anxiety I have. Anyway, I appreciate you writing me back.-Amy
  • gailaj
    gailaj Member Posts: 36
    #4
    amyrhona said:

    thanks for writing me. I am so lonely. I appreciate it. Sorry you have antibodies, too. scans suck when you know you could otherwise just have bloodwork. I just had more bloodwork done yesterday because I just found out my most recent bloodwork DID have thyroglobulin levels in it AND high levels of antibodies. I think this means I must have some thyroid cells left somewhere in my body that my antibodies haven't gotten to yet. So my doctor is re-testing me. Maybe that's why I feel so crappy. Maybe my cancer is back. I can't figure out why I would have a thyroglobulin reading, even though it was very low, if I have so many antibodies? Well, I hope more people write me. I am supposed to be getting a one-on-one volunteer, also, that will call me. I am so depressed and anxious most of the time, now. I also have an appointment Monday with an oncologist/psychiatrist at the major cancer center in my area (Atlanta). I am VERY excited about this appointment! I can't wait to talk to a mental health professional who only works with cancer patients. Maybe he can get a handle on all this anxiety I have. Anyway, I appreciate you writing me back.-Amy

    Thank you again, Amy, for this insight on the antibody issue and my other TSH question (my original post). Although my thyroid cancer was/is not as virulent as yours seems to be, I understand your anxiety, and especially your frustration about the uncertainty of what comes next. When it was first explained to me, the surgeon made it sound so simple, but now I feel like I need a medical degree to understand all of the nuances -- not so simple anymore. Good luck with your appointment, I hope it helps to ease your anxiety! (As I think I mentioned, I am a long-distance runner, so for me, running for a few hours always helps ;) Be well, Gail
  • koolkst
    koolkst Member Posts: 4
    #5
    hi amy,
    I know how you feel being scared and everything. I was 21 in 2005 when i found out that i had ptc-papillary thyroid carcinoma. And i also was told that i also had hashimoto. I found out shortly after returning back from iraq. I also went through surgery and rai treatment. I am about to do my third dose this year. but after three years i am still tired and overwieght, which really sucks. But my thyroid levels are still off, the only thing that i am worried about is that i have been trying to get pregnant for about 2 years now and still know luck. I just hope that having that treatment didn't mess up my reproductive organs.
    Take care and just letting you know that you are not alone.
  • PMelton
    PMelton Member Posts: 2
    #6
    Sounds like you have had a rough time of it. Over time antibodies go down and tests become more accurate. I am a 10 year survivor of pap/fol with prior history of hashimoto/ My antibodies are now at 0. Check out www.thyca.org for more information and support services from fellow survivors.
  • apease7
    apease7 Member Posts: 2
    #7
    tired and scared
    hello my name is A. Pease, I understand, my doctors just found two new spots in my throat after being in remission from papillary thyroid cancer for two years. I am tired of being sick and tired. Be happy you have a doctor who is willing to talk to you, I am being seen in a fellowship setting, where I get a new doctor every year. As for recovering from treatments, I think it is up to an individuals body composition on how they recover from the treatments. I personally left the hospital the day after surgary and went back to work two weeks after radiation treatment in the dreaded quarantine room. That was fine for me, but it might not work for you. I now have quite my job only because my cancer has returned. So I will send good vibes your way as 2008 progresses.
  • amyrhona
    amyrhona Member Posts: 10
    #8
    koolkst said:

    hi amy,
    I know how you feel being scared and everything. I was 21 in 2005 when i found out that i had ptc-papillary thyroid carcinoma. And i also was told that i also had hashimoto. I found out shortly after returning back from iraq. I also went through surgery and rai treatment. I am about to do my third dose this year. but after three years i am still tired and overwieght, which really sucks. But my thyroid levels are still off, the only thing that i am worried about is that i have been trying to get pregnant for about 2 years now and still know luck. I just hope that having that treatment didn't mess up my reproductive organs.
    Take care and just letting you know that you are not alone.

    good luck
    good luck with getting pregnant. That sounds like so much fun. I've always dreamed of being a mom. Take Care,

    Amy
  • amyrhona
    amyrhona Member Posts: 10
    #9
    PMelton said:

    Sounds like you have had a rough time of it. Over time antibodies go down and tests become more accurate. I am a 10 year survivor of pap/fol with prior history of hashimoto/ My antibodies are now at 0. Check out www.thyca.org for more information and support services from fellow survivors.

    congrats!
    That's great to know that it can go away. Right now, after all that testing I had, I am headed to MD Anderson on Sunday, so it would seem the cancer is back so maybe they'll get it this time.

    Amy
  • wknox
    wknox Member Posts: 20
    #10
    Hello
    Hi there, How are you Amy? I had my RAI in Oct 08 it has taken me till now to start feeling human. My endo gave me a shot of B12 the other day seems to have boosted my energy. I still feel different, another member wrote, "you'll never be the same". I think she hit the nail on the head. I hope your doing well! Wendy
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • ameliarose34
    ameliarose34 Member Posts: 3
    #12
    ~@~~~~~~~~~~~~~~~`>
    Hello, I read your story and felt I was reading my own :(..., and no your not alone, It's been a 4 yr struggle for since as I say "they took out my soul), and after all that, I was in need of an 2 op due to the scar tissue having cancer. I can say to you that your still keeping your head up much more then me, your in school still and thats an A+ for you, I have been outta work for a very long time, I still feel sick, my relationship has also been affected bye the cancer, I'm just not me anymore, and everyday I want to give up, also dealing with a nodgule in my lung and 2 in my breast, wont know anything til doctors call, and I have no coverage, so that scares me 2, your story touched my heart and I just wanted to say, your stronger then I am, and most importantly, being around family helps alot!!!!!!!!!! My prayers and thoughts will be with you@~~~~~~~~~~~>

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