New to thyroid cancer.. freaked out

2

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  • Perstephanie
    Perstephanie Member Posts: 26
    #22
    BellsAngel69 said:

    Perstephanie
    If you are on synthroid already, it's probably because you were diagnosed with hypothryroidism? Just my best guess. Now you've been diagnosed with thyroid cancer. After your thyroid is removed, your body will have a fresh start by taking the synthroid. I am positive it will work better for you because you won't have your diseased thyroid counteracting the effect of the synthroid. Like others have said, it will take some tweaking to get the right dosage. I gained weight, was tired, moody. My endocinologist keep telling me my levels were fine, but I listened to my body and was adamant my level wasn't right. After about six months and adjusting it three times, I finally started to feel like my old healthy self. Hang in there. I know it's scary, but you'll get through it. Stay positive and be strong!! This is a great community here. We're here for you, whatever you need!

    My thyroid is not
    My thyroid is not counteracting the Synthroid. My thyroid was working - I have never ever had an abnormal test. I have Hashimoto's, but that doesn't mean my thyroid is diseased - it means my immune system is screwing up. Not my thyroid. Some people never do well on Synthroid. I felt 100% better on nothing than I do on Synthroid. If my "diseased" thyroid were "counteracting" the Synthroid, then I would have felt worse before. I know the science behind this. Trust me. Synthroid is not going to work for me. Some people cannot convert T4 into T3 well. Your thyroid produces T4 and T3. Synthroid is only T4. Some people do great on it. Some of us don't. I'm not going to stick with a doctor who insists on basing it on levels because I know when my TSH is at 2.5 I have major major symptoms, but I'm not going to believe that I'll feel fine on Synthroid if I just remove the only part of me that was producing hormones that didn't make me feel like hell all the time and stay on the pills that are making me feel that way. If Synthroid is my only option, and it isn't, then it is absolutely not worth this.
  • Perstephanie
    Perstephanie Member Posts: 26
    #23
    Blair84 said:

    Hi Perstephanie
    I understand how you feel, to be honest I can't cry anymore. I've cried so much... I'm scared too I don't know how my life is going to look like without having my thyroid. I also don't do well when it comes to medications...All you can do is pray and think positive. It can only be worst..you will get through this :)

    I freak out and cry every
    I freak out and cry every night. I'm on plenty of medications but it's my doctor trying to counteract the depression that's thyroid based so they just aren't working. I don't like knowing that without these medications I could die. I know someone who had a lobectomy and is fine and her thyroid's still producing its own hormones for now. I know that's not my situation but Hashimoto's doesn't mean there's a problem with my thyroid; it means there's a problem with my immune system. It's an autoimmune disorder. There is no reason in the world to think Synthroid will be any different after my thyroid is removed. Synthroid is how Hashimoto's is treated normally to begin with and it works for some people and it doesn't work for others. I'm just sick of people telling me the drugs that are making me feel horrible now will suddenly make me feel great after I have no other options because there's no logic behind that and it's not like I can turn around and put my thyroid back in. I have talked to doctors. I know there are other medications. Unfortunately they aren't available in the US right now. It doesn't make me feel any better to know that false positives on FNAs occur because of Hashimoto's, either.
  • lynn2318
    lynn2318 Member Posts: 41
    #24
    Blair84 said:

    Thank you
    Im going to see my surgeon on Feb 17, so I'm not sure yet when I will have my surgery. Where were you isolated? because I live in a small apartment with my boyfriend with only one bathroom so I guess I won't be able to stay in my house. I just want to be done with all this..

    Hi again Blair, I stayed in
    Hi again Blair, I stayed in my bedroom after my treatment. I have a bathroom in there so I could be isolated in my room. That will be difficult for you to share your apartment with your boyfriend since you can't use the same bathroom facilities. You will want to be somewhere familiar and comfortable. You can easily clean your entire apartment when your isolation is over. I used Clorox wipes and just wiped down everything in my room and bathroom. I know you want this over. I can totally relate to that feeling. I am almost 2 years postop and I still have anxiety sometimes. I had to tell a insurance guy about my cancer today and I got a lump in my throat and started to cry. Hang in there, the waiting is so hard.
  • AlexMother
    AlexMother Member Posts: 6
    #25
    Blair84 said:

    Thank you lisa
    Yes, this is
    Thank you lisa
    Yes, this is so new to me that I can't wrap my mind around this. I did not know who I can talk to, I have great mom, friends and awesome boyfriend but they all say you will be ok.. I'm tired of hearing that especially when they have no idea what I'm going thru. So is nice to speak to people who understand me. I do have a great doctor and I'm glad for that but still... I'm lost. I just started new semester in school but already I can't focus at all, I'm not sure if is even worth it to stay in school right now. Thank you for your kind words.

    I don't have the desease but
    I don't have the desease but my son who is now 22 does and I have been there every step of way with him. I can't say I know how he feels or what he thinks all the time but we talk alot about his feelings and it has helped him. We too heard "you/he will be ok" but I have to say it is never easy to hear when you are in the middle of such an unimaginable time. Who at such a young age as you and my son think cancer is going to become your life. I will tell you confide in your family about your feelings just ask them to listen not to react to what you say. They will take it and process it and have a better understanding where your mind and feelings are. It is not easy as a parent to watch your child go through such a horrific time. All I wanted to do was fix my son, put a bandaid give him a kiss and tell him it will be ok like when he was little. But, this time it hit like knife in the heart and I took my anger and researched everything so I could educate him and our family so we could be there and support him everyday. There are times I won't lie that I wonder if he could do more to be positive or if he is just going into a hole but I step back and realize that is also part of this terrible situation. Through all my research I am amazed how much our thyroid effects every aspect of your body. Listen to your body take one step at a time and ask for help from friends, family, or professional. My son's therapist has shown him some great meditation steps when he has bad moments. He has helped him with his negativity. And helpped him realize that God doesn't hate him. All what goes through your mind is normal but don't shut out the people who love you. My prayers are with you in finding comfort and peace and to a recovery like nothing else. Take care
  • Blair84
    Blair84 Member Posts: 45
    #26
    AlexMother said:

    I don't have the desease but
    I don't have the desease but my son who is now 22 does and I have been there every step of way with him. I can't say I know how he feels or what he thinks all the time but we talk alot about his feelings and it has helped him. We too heard "you/he will be ok" but I have to say it is never easy to hear when you are in the middle of such an unimaginable time. Who at such a young age as you and my son think cancer is going to become your life. I will tell you confide in your family about your feelings just ask them to listen not to react to what you say. They will take it and process it and have a better understanding where your mind and feelings are. It is not easy as a parent to watch your child go through such a horrific time. All I wanted to do was fix my son, put a bandaid give him a kiss and tell him it will be ok like when he was little. But, this time it hit like knife in the heart and I took my anger and researched everything so I could educate him and our family so we could be there and support him everyday. There are times I won't lie that I wonder if he could do more to be positive or if he is just going into a hole but I step back and realize that is also part of this terrible situation. Through all my research I am amazed how much our thyroid effects every aspect of your body. Listen to your body take one step at a time and ask for help from friends, family, or professional. My son's therapist has shown him some great meditation steps when he has bad moments. He has helped him with his negativity. And helpped him realize that God doesn't hate him. All what goes through your mind is normal but don't shut out the people who love you. My prayers are with you in finding comfort and peace and to a recovery like nothing else. Take care

    Thank you
    Thank you so much for your kind words, it made me feel better. I wish you and your family the best!!!
    Take care
  • AlexMother
    AlexMother Member Posts: 6
    #27
    Blair84 said:

    Hi lynn2318
    Hi, how is the radioactive iodine treatment??? What are the side effects? The doctor told me I will have to take pills for the rest of my life.. how is that? Side effects??

    Keep asking all the
    Keep asking all the questions no matter what they are it is never a stupid question when it comes to seeking information about your cancer. My son's ENT office told my friend I needed to stop asking so many questions and get off the internet... NO matter what keep researching as I did. My son's treatment should have went a different way the first go around and we found out too late. Please be sure to see an Endocrinologist after surgery he will be the one to order your RAI and this is important... Research shows that if you have had a CT scan with contrast it is vital to the uptake to wait 3mo. after that date to get the optimal benefit. This was not done in my son's case it was given at 7wks and his cancer that was left in his lymph nodes continued to grown and rapidly. His last surgery in Nov 09 (different ENT surgeon) found a clean margin just past the base of his skull we were really blessed that it did not travel further. RAI didn't really make my son sick just a little nausea his does was 161mci I will also say it is important to suck on the lemon drops or anything sour to keep your salivary glands working. My son didn't do it often enough ?? on how much that is they recommend every 2 hrs. He now has extreame pain in his salivary glands on one side when he begins to eat or drink (first few bits) this is due to the blockage that formed you can read more about that on the Thyca.org lots of information there. All and all it is tolerable but follow the guides do all you can to keep positive and focus on what you What to do in life :) Take time for yourself and your boyfriend take a trip take a moment to laugh you deserve it. Take care and let us know how you are after surgery. My thoughts are with you know that you will be able to continue your life you will have speed bumps and road blocks but you sound to be the type of girl that won't take it :) keep that up! It is impossible for anyone to imagine how you feel or what you are going through. I have watched my son and listen to all these same questions and frustrations. It is good to be a fighter... God bless and take care.
  • Blair84
    Blair84 Member Posts: 45
    #28
    Happy news!!
    Just a update. Went to dermatologist and my results came back negative. There is no sign of cancer in my mole and around on the skin, Now I can focus on papillary carcinoma, and keep positive attitude. God is good!!!
  • usljh10
    usljh10 Member Posts: 85 Member
    #29
    Blair84 said:

    Happy news!!
    Just a update. Went to dermatologist and my results came back negative. There is no sign of cancer in my mole and around on the skin, Now I can focus on papillary carcinoma, and keep positive attitude. God is good!!!

    Great !!!
    Love to hear Good New's!!!!
  • Blair84
    Blair84 Member Posts: 45
    #30
    usljh10 said:

    Great !!!
    Love to hear Good New's!!!!

    Hi
    Yes, thank you. God bless you
  • Blair84
    Blair84 Member Posts: 45
    #31
    Blair84 said:

    Hi
    Yes, thank you. God bless you

    Hey
    Ok so for the past few days I've been feeling little pain in my neck. I don't know why!!!! Like the thyroid cancer is bothering me, is this normal????
  • usljh10
    usljh10 Member Posts: 85 Member
    #32
    Blair84 said:

    Hey
    Ok so for the past few days I've been feeling little pain in my neck. I don't know why!!!! Like the thyroid cancer is bothering me, is this normal????

    Sure, it's normal
    It may be the nodules causing pressure, and it may mental. :) Your mind can play amazing tricks on you now that you know. I have a lot of scare tissue from my surgerys and my throat get tight and pulls, my mind is telling me something could be going on. I go to my endo March 22 for my 6 month ck. Our cancer is slow growing so I guess that's a plus. I hate to say that. because any kind of cancer is bad... :)even if it is slow.
    Good picture,
    Lisa
  • Anna82
    Anna82 Member Posts: 4
    #33
    Perstephanie said:

    I freak out and cry every
    I freak out and cry every night. I'm on plenty of medications but it's my doctor trying to counteract the depression that's thyroid based so they just aren't working. I don't like knowing that without these medications I could die. I know someone who had a lobectomy and is fine and her thyroid's still producing its own hormones for now. I know that's not my situation but Hashimoto's doesn't mean there's a problem with my thyroid; it means there's a problem with my immune system. It's an autoimmune disorder. There is no reason in the world to think Synthroid will be any different after my thyroid is removed. Synthroid is how Hashimoto's is treated normally to begin with and it works for some people and it doesn't work for others. I'm just sick of people telling me the drugs that are making me feel horrible now will suddenly make me feel great after I have no other options because there's no logic behind that and it's not like I can turn around and put my thyroid back in. I have talked to doctors. I know there are other medications. Unfortunately they aren't available in the US right now. It doesn't make me feel any better to know that false positives on FNAs occur because of Hashimoto's, either.

    Hashimoto's
    Perstephanie,

    Hashimoto's is an immune disorder but it is also a thyroid disorder. It is also called chronic lymphocytic thyroiditis. Basically it is a condition where your immune system attacks your thyroid. However, is is also known to attack T4, which would explain why synthroid is not working for you. Your body converts T4 (inactive form) to T3 (active) for use. We use cytomel on our patients, which is a T3 suppliment, and have good success with this. In addition, having your thyroid taken out will not make synthroid any better if your antibodies are attacking T4. This is a link with more information about it. I hope this helps. Have they done a test for antibodies to T4?

    http://www.mayoclinic.com/health/hashimotos-disease/DS00567
  • changoslf
    changoslf Member Posts: 4
    #34
    Blair84 said:

    Hey
    Ok so for the past few days I've been feeling little pain in my neck. I don't know why!!!! Like the thyroid cancer is bothering me, is this normal????

    same symptoms
    Hey my name is JOHN and im 26 with Medullary thyroid cancer..i had been diagnosed in 2008 had a radical neck disection because it had spread and recently went through radiation therapy..in response to your question..my neck felt the same way like i had a sore lymph node or something..thats what made me go to the doctor in the first place..i think it can be a combination of both mental and physical..although i did not know i had cancer until the biopsy..so..well lmk on my inbox if i can be of more help thanks JOHN
  • Blair84
    Blair84 Member Posts: 45
    #35
    changoslf said:

    same symptoms
    Hey my name is JOHN and im 26 with Medullary thyroid cancer..i had been diagnosed in 2008 had a radical neck disection because it had spread and recently went through radiation therapy..in response to your question..my neck felt the same way like i had a sore lymph node or something..thats what made me go to the doctor in the first place..i think it can be a combination of both mental and physical..although i did not know i had cancer until the biopsy..so..well lmk on my inbox if i can be of more help thanks JOHN

    Hey
    Yea I freak out a lot so it might be mental more then anything...
    Thanx for the response
  • Blair84
    Blair84 Member Posts: 45
    #36
    Hey friends
    I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...
  • Blair84
    Blair84 Member Posts: 45
    #37
    Hey friends
    I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...
  • Blair84
    Blair84 Member Posts: 45
    #38
    Hey friends
    I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...
  • CJMom
    CJMom Member Posts: 9
    #39
    Blair84 said:

    Hey friends
    I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...

    I was basically where you
    I was basically where you are a month ago. I had a suspicious nodule but FNA was negative 8 months ago. After another ultrasound and 2nd FNA recommendation, I went in for a partial (right side) thyroidectomy. I'm 30 years old and had this weird sense of doom since this all started. I just had a feeling it needed to come out. Papillary carcinoma was found during my surgery. My ENT surgeon went ahead and performed a TT at that point. He told me exactly the same thing you were told. The surgery lasted approx. 4 hours. He did not mention anything about lymph nodes, although the final path report said it didn't spread. I sure hope it's right because I've read that's common. Good luck to you! I hope everything goes well and you have a quick recovery.
  • Blair84
    Blair84 Member Posts: 45
    #40
    CJMom said:

    I was basically where you
    I was basically where you are a month ago. I had a suspicious nodule but FNA was negative 8 months ago. After another ultrasound and 2nd FNA recommendation, I went in for a partial (right side) thyroidectomy. I'm 30 years old and had this weird sense of doom since this all started. I just had a feeling it needed to come out. Papillary carcinoma was found during my surgery. My ENT surgeon went ahead and performed a TT at that point. He told me exactly the same thing you were told. The surgery lasted approx. 4 hours. He did not mention anything about lymph nodes, although the final path report said it didn't spread. I sure hope it's right because I've read that's common. Good luck to you! I hope everything goes well and you have a quick recovery.

    Hey
    @CJMom
    Thank you, yes I'm hoping for fast recovery!!! I'm very positive
  • Blair84
    Blair84 Member Posts: 45
    #41
    Hi
    I had the surgery yesterday and I fell ok, better then I thought. The doctor removed the left side but told me that he didn't find any cancer in it, but to make sure we will send my thyroid to lab and I should have the results in 2 weeks. If its gonna come back positive then he will remove the right side if negative then he will leave it like that...it's all confusing because I thought I had cancer....idk well now Im hoping for negative results...God is good

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