Thyroid cancer/thyroid problems

coburngirl2
coburngirl2 Posts: 87 Member
edited November 5 in Introduce Yourself
Come join us THYROID CANCER SURVIVORS in the thyroid cancer/thyroid problems group. A great place to meet other people with similar challenges and finding ways to bust through the myths and the ups and downs of dealing with this "new normal" and push through. My endorinologist and PCP both told me I would not lose weight and would only gain. 1 year later I am still at my presurgery weight, which is on the far wrong side of 200, BUT the energy is back FINALLY and I will work at this till it's off for good.

Quick about me: I had a thyroidectomy summer 2012 because I had nodules that were enlarging and every time I would put my arms over my head (doing jumping jacks specifically) the room got dark and I hit the floor. Went to see a surgeon and during surgery he saw that my wind pipe was being flattened by my thyroid and my airway was no bigger than a straw. After removal of a ONE POUND THYROID, we found out it was full of cancer. I spent a week in ICU due to my calcium levels being low, I got to have a central line placed through my jugular and they "accidentally" placed the line in my heart and gave me an entire bag of calcium. There were so many bizarre things that happened the day of surgery and the week following, that my surgeon said he would never ever operate during a full moon let alone a blue moon ever again LOL. So after the rapid heart rate and near death experience happened, I got to go home and figure all this crap out. I"m no victim, crap happens, and am looking for like minded people to join our little group :)

Replies

  • creay2012
    creay2012 Posts: 124 Member
    Oh wow what a crazy experience. Glad to see you are doing better.


    I will not accept that this is life and I need to get use to this as my new normal. I am more determined then ever to get my health and weight under control. It is a journey not a race and it will take time.
  • WrenPat60
    WrenPat60 Posts: 45 Member
    Your story is a major horror story! I am so happy that you are feeling a little more normal now. I cannot understand how our doctors can let nodules go so out of control as in your case. In my case, I didn't even know I had a thyroid issue. If I had symptoms, I did not realize it. That is why I consider myself very very lucky and blessed to have caught it when I did.

    I have a good friend who has Hashimoto's and is so unconcerned about her levels and just sees her general practice doctor. Her daughter has Lupus and sees a specialist so my friend goes by hearsay from her daughter as to what her endo doctor says. That is so lame! Thank you for posting your experience. I hope others see it and become involved with their thyroid care.
  • Phrick
    Phrick Posts: 2,765 Member
    I have thyroid "issues" but have been told repeatedly that since my labs come back normal I'm "fine." BULL CRAP I am, you can't possibly tell me a multi-nodular goiter, average body temp of 96.4, crushing fatigue, wicked insomnia, etc etc etc are FINE. So sick of being brushed off, ugh. I just ordered a book called Stop The Thyroid Madness, waiting for it to arrive and praying I can learn enough to make myself heard, finally.
  • coburngirl2
    coburngirl2 Posts: 87 Member
    I have thyroid "issues" but have been told repeatedly that since my labs come back normal I'm "fine." BULL CRAP I am, you can't possibly tell me a multi-nodular goiter, average body temp of 96.4, crushing fatigue, wicked insomnia, etc etc etc are FINE. So sick of being brushed off, ugh. I just ordered a book called Stop The Thyroid Madness, waiting for it to arrive and praying I can learn enough to make myself heard, finally.
    I was first diagnosed when I was 24 and pregnant. The found nodule chains from my esophagus past my breast bone and have had me monitor with fine needle aspirations and ultrasounds for years and they said by the time I was 40 I had a good chance of them turning to cancer. 8 months after my 40th birthday I had my surgery :( MY blood work and all studies NEVER EVER EVER showed abnormalities or cancer and my surgeon said he had never seen anything like my situation. He also said that all my nodules were "vascular" with a strong blood supply and that could have interfered with the blood work. Everyone always thought it was BS for me as well and that I was just looking for an excuse for the weight gain. Like we all say in our group, be your own advocate. It took 3 surgeons for me to finally find one to take out my thyroid and I actually went through a head and neck specialist...No way a general surgeon could have handled the job. Life's too short to feel like crap all the time.
  • coburngirl2
    coburngirl2 Posts: 87 Member
    Your story is a major horror story! I am so happy that you are feeling a little more normal now. I cannot understand how our doctors can let nodules go so out of control as in your case. In my case, I didn't even know I had a thyroid issue. If I had symptoms, I did not realize it. That is why I consider myself very very lucky and blessed to have caught it when I did.

    I have a good friend who has Hashimoto's and is so unconcerned about her levels and just sees her general practice doctor. Her daughter has Lupus and sees a specialist so my friend goes by hearsay from her daughter as to what her endo doctor says. That is so lame! Thank you for posting your experience. I hope others see it and become involved with their thyroid care.
    Ugh see, I can't stand that. People have to get the facts. I do medical transcription and hear about this stuff all the time but I would never self diagnose. I also learned to have the right questions but if I go in to an appt with internet info or a huge list they don't take me serious. I'm very blunt to put it politely (haha) and my dr.s have been great. Just every freak thing that could happen did happen, and I didn't even know i had cancer until after my surgery. All biopsies (FNA) were always negative.

    If your friend needs a kick in the butt about "being her own advocate", please feel free to share my mom's story with her. My mom was diagnosed with stage IV breast cancer and I went with her to all of her appointments from day 1. She was terminal but lived 4 years after her diagnosis. The oncologist said she was doing good and didn't need the chemo infusions and could go on Tykerb, which was a chemo pill she could take at home. Mom didn't understand the dosing and called the pharmacist to explain it. She still didn't understand and didn't want to bother anyone, so she decided to do it herself. She took 3 months of dosing in 3 weeks, just before Thanksgiving, destroyed her liver and died just before Christmas 2007 from liver failure of all things. Always, always, ALWAYS ask questions when it comes to health and the doctors get paid big bucks to listen to us. In my life this is the only thing I will ever preach about because Heaven got an angel that didn't have to go so soon. :(
  • coburngirl2
    coburngirl2 Posts: 87 Member
    Oh wow what a crazy experience. Glad to see you are doing better.


    I will not accept that this is life and I need to get use to this as my new normal. I am more determined then ever to get my health and weight under control. It is a journey not a race and it will take time.
    Thank you, I do feel better. I think the calcium in the heart and the RAI treatment are what wore me down the most. It really is lifestyle and not a journey to get back to normal. We are CANCER SURVIVORS and we keep surviving through strength and awareness. It's different for all of us, but the commonality is looking for the light at the end of the suckfest tunnel lol
  • michellemceachran
    michellemceachran Posts: 13 Member
    hey there I am happy you are doing much better and are on the mend...
    I myself are battling with an underactive thryroid, fatigue, tiredness, weight gain i cannot control on (100mg on thyroxine) i feel like \i am battling a never ending problem...michelle
  • michellemceachran
    michellemceachran Posts: 13 Member
    Hi there I am ike you fed up being brushed of in fact my doc laughed when i saud i was not loosing weight even though i was trying really hard!! let me know how you get on with the book...michelle :)
    I suffer always tired , sore aching muscles,tiredness cant loose weight...
  • coburngirl2
    coburngirl2 Posts: 87 Member
    hey there I am happy you are doing much better and are on the mend...
    I myself are battling with an underactive thryroid, fatigue, tiredness, weight gain i cannot control on (100mg on thyroxine) i feel like \i am battling a never ending problem...michelle
    Have you tried Armour? I've heard that some people feel so much better having the T3 and T4 hormones. My endo will not prescribe, saying it's not recommended for those that have had thyroid cancer. I take Synthroid and 5 mg of Cytomel, which has made all the difference. I hope they figure out what works for you. I'm just determined to lose the weight and keep getting stronger.
  • Beavergong
    Beavergong Posts: 178 Member
    I am a thyroid cancer survivor of 22 years and it is hard to lose weight BUT I'm glad to say on 5:2 !ve managed to lose 17 kg to date and I'm pitching for 18 kg my goal in the next 6 weeks. It's taken a year but I haven't been this weight in 22 years so I,m really pleased!
  • samg092
    samg092 Posts: 8 Member
    I was born completely without a thyroid. They call it a congenital thyroid defect and by the time they caught it at 9 weeks, the doctors almost threw in the towel. They said I'd never walk, talk, eat normally or function. Thanks to daily medication, I was able to prove them wrong. I'm now almost 22 and while the going is a little tough in terms of watching what I eat and regulating my metabolism, I'm one of the success stories. It is possible to live completely without a thyroid, and for the inspirational folks fighting thyroid cancer and those who had it taken out, I just want to say that it is worth it and your battles aren't for nothing. Not having a thyroid isn't the end of the world.
  • bubbles1212
    bubbles1212 Posts: 206 Member
    When I was about 19 (30 now), I felt sick for a year and went to the Dr about once a month. They always told me I was fine. So, I gave up. I went in for a routine check up and the PA found a nodule on my thyroid. After several tests I was told I may have cancer and need a partial thyroidectomy ASAP and if it came back malignant, I had to do a complete thyroidectomy. I had my surgery and it was biopsied as Follicular Adenoma (precancerous). I have to do my blood work and ultrasound every 6 months. I was diagnosed with Hashimoto in 2008. I have cysts and nodules on my remaining side, but since my labs come back normal, they don't want to do anything.

    I went for my labs this morning, so we will see what it comes back as. All of those who have suffered and continue to suffer, I wish you the best of luck and health!!
  • coburngirl2
    coburngirl2 Posts: 87 Member
    Congrats on your 22 years! That is wonderful and congrats on your weight loss as well. Proof that it CAN and WILL be done, and doctors need to stop treating us like we are broken and unable :)
  • coburngirl2
    coburngirl2 Posts: 87 Member
    Thank you so much for sharing your story. I never knew that condition existed. It's quite an adjustment to the system not having a thyroid and for me that hardest part has just been (working out all the kinks) of adjusting to the new way my body wants to function. Definitely a lifestyle and not something we just "get through" lol
  • coburngirl2
    coburngirl2 Posts: 87 Member
    Thank you , good luck to you as well and I hope the blood work comes back in your favor. I swear it's frustrating when you KNOW something is wrong but they CAN'T find it. My surgeon literally had no idea he would find what he found during my surgery. Took almost 5 hours to get that sucker out.
  • sabrina1479
    sabrina1479 Posts: 3 Member
    Hello all, I had thryoid cancer 17 years ago when i was 17 years old. I was just reading that some of you were wondering about armour. I was on syntrhoid for 17 years and finally found en ando that would prescribe armour in march of this year. It has not been a great experience so far. I have gained 10 pounds, I have had awful hypo symptoms that I have never experienced before and i constantly feel bloated. I have a strict gym regiment and haven't been able to go as often bc I feel that awful on the armour.

    I lost weight by following a clean diet and being dairy free. Anybody else have any success following a diet? I am not into shakes because i don't feel like they are a long term answer. Eating clean is something that I can do for life. What has worked for you?
  • Michelle333
    Michelle333 Posts: 24 Member
    Hello, where can I go to find the Thyroid Survivor Group to join?
  • nerdjpg
    nerdjpg Posts: 11
    i was born with out a thyroid.
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