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Like a Rollercoaster that Goes Down, but Never Comes Back Up

Post Published: 25 June 2010
Author:
Category: Dear Thyroid Letters
This post currently has 25 responses. Leave a comment

Dear, Dear Thyroid Community:

I was diagnosed with papillary carcinoma about three years ago. All of a sudden my thyroid was totally removed. After dissection of my thyroid removal, it was found I did not have cancer. It was a mistaken diagnosis. The pathologist apparently left the biopsy in the needle too long, only one out of four only came back positive. They didn’t leave any of my thyroid left and injured my parathyroid in process. Of course it has really messed up my life in many ways:

  • I couldn’t find a lawyer to go up against Duke for the mistake.
  • I gained over 50 pounds.
  • My family says I went crazy because I left my husband after 33 years.
  • I have all kinds of different and weird side effects, not just from the supplement but now I have high blood pressure, slow metabolism, liver problems, and emotional ups and downs.

People don’t realize how much your thyroid does for you. I feel so ugly, fat and get very down.

I have lost my job three times, partly because they were afraid I was going to be out for chemo or radiation therapy (even though I didn’t have any). Then I would get sick from trying to correct calcium and Vitamin D imbalance. My body and bones ache, and even though I’m on medication for depression/anxiety, insomnia and other things, I sometimes just got emotional. Anyway, this has caused more problems in my life than can be imagined. They could of at least left part of it.

My question is….We can do heart, liver, lung, kidney and other transplants but no damn thyroid transplants. WHY? We can also do skin grafts, I think Japan is the only one who has tried this.

Now I have a spinal implant due to spinal nerve dying, whether it was related to being overweight or medication side effects, who knows. Sometimes doctors don’t know the answer so they use their license to PRACTICE MEDICINE. We forget that, now it’s just..”we’ll try this and we’ll try that, and if that don’t work we’ll try something different.”

This is my body and I have to live it the rest of my life. I want it fixed. I want to lose weight so I don’t hurt in my bones, my back, my mind. I want to feel better about myself. Going to therapy doesn’t help (been there done that), meds don’t help (been there, done that too). I can’t sue because it’s DUKE UNIVERSITY and every lawyer I talked to in the area wouldn’t touch it. No one knows what an INFARCT is. It is when a biopsy is left too long in the needle and masks itself as cancer.

The sad part is I am a nurse, can’t find a job in the area (near Duke) in Raleigh NC area. I get nauseated from the meds, and of course the insurance doesn’t pay or you can’t have but so many pills for insomnia, nausea, and/or anxiety because of the tier rating.

I’M TIRED OF BEING SCREWED BY DUKE UNIVERSITY. This is not the first time, either. I’ve had a hysterectomy (unnecessary), BTL, lost my daughter at Duke (she died) after she was dropped in the OR on the floor from a gurney. Unfortunately there are other things. It took one girl 15 times to get blood from my arm, but she was learning and practicing, so I thought I would be nice. I would give anything to go there to get my Physician’s Assistant license, but I can’t afford school, with no job. Also the weird part, is that my ex-husband was an administrator there, funny huh? He retired a few years back, but of course he had to keep working at another university to make ends meet (he has everything from our separation). I can’t afford a place to live, can’t get a damn job, my adopted child will not have anything to do with me. I know I am not crazy, I am a good hard worker, great nurse. My patients loved me and my students I taught in high school still love me and want to hang with me.

It’s a shame when no one will help, or you have exhausted all avenues of hope and help. I can’t even afford to take care of my parents anymore because I’m not nursing.

If anyone has lost weight after thyroidectomy please let me know. I have sleep apnea now and a very slow metabolism. Due to my high BP that has also caused more problems. HELP ME PLEASE!!!

Susan H

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25 Responses to “Like a Rollercoaster that Goes Down, but Never Comes Back Up”

  1. Thank you, Susan, for being so open and honest with us! What you’ve been through is unbelievable and inexcusable. We are here for you and will support you through this!

    xoxo,
    Joanna

  2. ((((HUGS))))) I wish there was a way to relieve the pain of all in this group. Your letter brought me to tears. I still have a thyroid but often expirence many of the same symptoms/ side effects you mentioned.

  3. Cetta says:

    I just wanted to add my support and say I wish I could help.

  4. Debra says:

    Oh, how i can relate to this story. My life has been destroyed by my thyroid condition, so i feel your pain. You are NOT alone. The sad thing is, that i read more and more stories like this every day. Why do people with thyroid disease get treated so poorly. I just don’t understand it.

    I just got home from the hospital yesterday, after attempting suicide for the second time in a year. I’ve been severely ill for 2 years now, and can’t take it anymore. I’ve been to so many doctors, i’ve lost count. Been on 4 different medications. Had thousands of dollars worth of tests done. And nobody can tell me why my hair falls out by the handful every day, I weigh 90 lbs. ( I’m 5’8 ), every joint and muscle in my body aches, I’m exhausted, I have horrible anxiety, insomnia, stomach problems, and i’m so depressed, I can’t take care of myself anymore.

    Everybody in my life has just abondoned me. My husband left, my only son won’t talk to me, and none of my friends want anything to do with me. All i did was get sick. How do you blame someone for that.

    The doctors don’t care. Therapists don’t care. Family and friends don’t care. Yet, they all don’t understand why i want to die. I have absolutely nothing to live for. I’m so tired of being sick and alone. I know i will never be well again, and have lost everything. What’s the point.

    I’m so sorry for all you’ve been through. Nobody deserves to be treated like that. Yet we are. I wish i had cancer, then maybe then somebody would help me. If it’s thyroid disease, nobody will. It all just makes me so very sad 🙁

  5. DAT says:

    Hi Susan,

    I read this quickly and will respond when I get back. This is the absolutly the most awful thing and my whole body is crying out for you. Your story makes mine seem like nothing. I hope you stay around, we can help each other somehow!

    Donna xoxo

  6. Linda says:

    Susan, your letter really made me think. If a major University Hospital can get away with such behavior and not be held accountable what can anyone do? I wish you strength and hope. Hang in there we are here for you.

    Debra, please know we are here for you. I know how it is to not have anyone to help you get through the hard times. I tried to kill myself and after going to tons of therapists with no help my OBGYN finally checked my thyroid levels. That is when I got my hypo diagnosis. I have been treated, but still have stumbling block days.
    Please keep trying and hang in there.

    I hope you both get the help you need and I will be rooting for you!

  7. Pattiecake says:

    Oh, Susan and Debra, I wish I could just hug you both! You have been through SO much! I am so sorry that you haven’t been supported in the way you deserve. I hope that things get better for you both!

  8. I am so sorry for all of the pain and suffering you have gone through. When I have been at the lowest of lows in my life, what has gotten me through is investing heavily in things that maintained my self confidence and motivation in a big way. This usually means taking on self-motivated projects that utilize my brains and other talents (you sound like a very smart woman too!)

    In my lowest of lows it was so helpful to have one, big positive endeavor in my life that I was in control of, that was challenging, and that I felt very proud of upon completion. They have always been the kind of projects where if things were not working out, I could come up with a solution, and there was never room to have failure rest on anybody else’s shoulders but my own.

    They were projects about which I could say “Where there’s a will, there’s a way.” It felt really good to have an area of my life in which that was true, because as you well know, there are many areas of life where your will, persistence, and desire are not enough to right whatever is wrong.

    Hang in there!

    Kairol

    PS – If you ever want to check out one of these big projects of mine – take a look at my book or blog: http://everythingchangesbook.com

  9. Sherree says:

    Susan & Debra, there are just no words to express how incredibly angry and sad both posts make me. You are NOT alone, honest. This community is the best thing to have ever happened to me. It gave me hope and resources. Surely we can do the same for you.

    Whilst there is just no excuse for the crappy treatment you both received, please don’t give up. What can we do for you?

    I fought for over 15 years with my former doctor about my thyroid (I’m hypo) and in the past 2 months have found another doctor who said yes, your thyroid is wonky and oh, you have a serious Vitamin D deficiency to boot. I’m now on med’s for both and am slowly, but surely starting to feel better. I would never have gotten the courage to explore other options if it hadn’t have been for Dear Thyroid.

    Both of you will be in my thoughts today…

    Sherree

  10. michellegutie says:

    I became emotional after reading your post Susan! I am sorry about all that has happened to you! I believe in the power of support groups and this is why finding Dear Thyroid has helped me out during my fairly new cancer diagnosis. We are availible to hear you out and will virtually provide a shoulder to cry on! I hope even sharing your story with us helped relieve some of your pain! The resources they provide may help empower you. Also, it may provide any additional resources you may need to help you look for more options to help you with your condition. Yesterday I attended the first thyroid cancer patient support group in my home town. We now have a new person to person support group, which was long overdue! The only reason why this is now available is because popular local reporter just went through her thyroid cancer ordeal. She has the clout and resources to get the ball rolling for the local cancer facilities to take notice and change their practices! I guess they are afraid of my local news reporter snooping around their possible lawsuits. I believe in Kairols advice by trying a project. Mine for now is completing nursing school because my cancer diagnosis will not force me out of the program! I have just one more year to go! I will join the staff that has caused me problems as well. I am going to improve thyroid cancer treatment from the inside! I hope our support is enough to help you emotionally. I’d like to think some of the weight is lifted from your soul 🙂 Take care Susan! Debra the same goes for you 🙂

  11. landsman2010 says:

    Susan,

    I got very emotional when I read your letter because I want to help you, connect with you. I know you said you tried therapy and I hear you — it doesn’t work unless the other facets in your life are willing to work with you (ie, your chronic pain diminishing). You have to work from the bottom up, and it sounds like the physical strains are what need to be addressed first. For the mental health side I recommend a Thyca support group (I know you never had cancer, but you went through (mostly, sans RAI) what all of us thyca patients did, plus, you are now hypo). http://thyca.org/sg/nc_raleigh.htm – You said you were in the RDU area so I figured this would be most relevant to you. I go to one in Charlotte and love the support I get.

    Lots of love,

    Alexa

  12. Gina says:

    susan
    oh my dear i feel some of your pain. ive been bumbling around the loma linda university med ctr for almost 8 years now. it all started when i was diagnosed as bipolar, then i got put on tons of medication and i put on a massive amount of weight and was diagnosed as diabetic. went through treatment plan after treatment plan and got heavier and developed severe gerd as well as sleep apnea, a couple of hernias, knee and back problems, and my allergies and asthma got way out of control. my healthy 152 lb 5 ft 4in body was now a hefty 260 plus. well about three years ago i got partnered up with this amazing diabetic spacialist, my hubby and i wanted to have a second child, so we needed to make a plan. this specialist he is my angel got my diabetis controled in a year, but my weight was getting heavier and heavier and i was retaining fluids and developed a heart condition. so following the advise of a great dr, i got rid of my pshyc dr and changed to one with in the loma linda group. my old dr had me on soooo much medication i was taking 10mg of ativan at night and so much more, my new dr after lots of tappering now only has me on 3 meds i was taking 8 in the pshyc area. im still taking a few meds for other issues but nothing like the 23 plus my two insulins i was taking a year ago. things are finally looking up or so i thought,lol…. i had hernia surgery in december of last year and since then things spiraled out of control…. just to tie this up, we changed insurances this year due to my hubby changing jobs, it was for the best i still have all the drs i had before but now i have a ppo which is much easier to work with. my angel dr moved to ucsd to teach so i had to find a new one, the one i found well lets just say he leaves much to be desired, i went through test after test and still showed all these symptoms and my levels were with in normal range, so he put me on levo and said i was slightly hypo. i developed this swelling in my neck as well as diffuculty swolowing and breathing so he reluctantly sent me for an ultra sound, at the same time an ent dr was working on my ears and noticed that i had some swollen lymphnodes so she sent me in for a ct. between the two test they found i had an enlarged thyroid and a very big nodule and many of my lymph nodes were going berzerk. the endo said all i needed was an increase im ny levo and id be okay, he said surgery would help but he felt i just needed meds. so i went for a follow up appt w/ the ent dr and she looked at everything and said in her opinon i needed an ultrasound biopsy right away, she got me in with in half an hour, i wasnt prepaired for this i had my 7 yr old with me, so he sat in the room while they did the biopsy and with in a week i was told i had cancer of the thyroid. i was having tubes put in my ears the day after they diagnosed me with the cancer and that awesome ent dr was explaining everything about the cancer and reasuring me my surgeon was amazing, when i rcvd this call from my endo dr, he called me to let me know i showed positve for cancer, i went to his office on my way home and he just kept apologizing to me for not hearing my pains. i dont know if ill go back to him but i do know in the last couple of weeks this group has given me great support, where others who were supposed to be there were lacking. we all have different stories but we all have something in common the butterfly has changed our lives. ive been told by outsiders oh after your surgery your life will go back to normal… okay, whatever,im glad you know person with your thyroid… i look at it this way its devistating but in a sence we are getting a new take on life. its not going to be easy but with the support of this group and i mean it when i say the few loved ones for me, im gonna kick this in the ass. we are here for you and will help you in any way we can, we each bring something different to the table, lean on us we are here. im on facebook, if you like you can msg me, ill listen ive got strong shoulders.sorry i got so wordy my stoy has so much more to it but this is your time. just know in time things will get better, it may not happen as fast as we like, but it will happen. tons of support and hugs are being sent to you from me.

    gina 🙂

  13. yogichic says:

    Susan, I am at a loss, speechless, after reading your letter. The immense anger I feel is indescribable toward all the people who have done you wrong. Damn them.

    Please keep visiting us here for comfort. We may have different stories but we all want the same thing: honesty, love and for someone to listen. We’re hearing you loud and clear.

    Positive thoughts and energy are being sent your way, via hugs, smiles and well wishes.

    Debra, this is for you, too.

    ☮ ♥
    Monica

  14. DAT says:

    Susan,

    I am emotional too but I am angry beyond words. There are laws relating to the employment issues in the US. You cannot be discriminated against because of your illness (Americans with Disabilities Act/ADA and Family Medical Leave Act/FMLA.) and it sounds like you would qualify. Why do you have to tell them about your health issues in the interview process, it is illegal for them to ask but sometimes hospitals have exceptions to certain laws. Have you thought about talking to the Equal Employment Opportunity Commission (EEOC), the government agency that oversees these acts? My background is Human Resources and they take on much less severe situations than yours.

    Do you see specialists? Do you have copies of all your medical records? Did Duke admit their mistake outright? I’m sorry if I am bombarding you with questions but I am trying to figure out how we can help you. Did you think about filing a complaint against the person who made the error with the state medical board? Have you thought about finding a lawyer a little further away but still in the same state? Are you satisfied with your doctors? Do you think you are getting all the tests you need? Lots of links here for that as well.

    The most important thing is for you to get better and this lovely community will help you with that. Lots of success stories with weight and digging ourselves out of our misery. And you are not crazy, we have all been down that road. It is your thyoidless self and your meds not doing their job. Have you been seeing your doctors on a regular basis? Do you understand how to interpret your lab results? Have you considered the natural thyroid replacement instead of synthetic, that might be better for you but I guess with money being an issue that might be a problem. A friend called a supplement company the other day and they agreed to send samples to get her started (not thyroid related). What are your energy levels like? Some of us have actually described times when we felt like we were dying a slow death and did not even care.

    You are not alone. I knew nothing about thyroid disease, I’m ashamed to admit, until I got diagnosed with follicular thyroid cancer because of a lump in my neck that my idiot doctor told me was probably sinus drainage. I let the thing grow for two years and only demanded more be done when people asked what was up with my neck, it looked like I had two adams apples.

    I’m babbling and I’m sorry. I’m still in shock and disbelief even though I should know better. I hope I am not upsetting you. I just think you can get to a better place once you realize that people can’t just walk all over you unless you let them. You need to get a grasp on the medical and psychological stuff first. I took klonopin (anti anxiety med) from day one of my diagnosis, I had too to function, I had a five year old son. I have been weaning myself off them now because I think the masked the hyper symptoms I had and they left me numb and I was not able to fight the good fight to get better care. I am on the road to recovery and you will get there too. We will help you, I promise.

    Please let me know your thoughts. I hope I did not upset you but you have to get out of your funk at some point so I’m hoping I am giving you some things to think about. I understand it is not easy, I do.

    I’m very sorry about your daughter, I can’t imagine and I think you should think poitively about tthe potenital of repairing the situation with your adopted child. And about your parents, is there anyone else they can lean on for a bit?

    Much love,
    Donna
    xoxo

  15. HDinOregon says:

    Susan, Debra,

    Horrific stories! Heartbreaking!

    Our electronic ears are always open, and our virtual shoulders are always there for you to lean on.

    {{{{{ Hugs }}}}}
    HD in Oregon

  16. DAT says:

    Debra,

    I’m sorry, I did not mean to slight you. I had hours to think about Susan’s letter and I had to let it rip. Please know that we are all here for you and truly do understand. You can’t go through what you are alone and if we can help you we will. Sometimes it takes many doctors to find the right one and the same with therapists. To all those that abandoned you shame on them. You will get better and it will be their loss. What are the next steps for you? It is easy to understand not feeling the lust to live with all that has happened to you but you can get to a better place. How can we help? Please take care of yourself and if you can’t go back to the hospital and make them take care of you. Don’t let this disease take you down, please don’t give up hope for better days ahead and please lean on us. We will be here for you, promise. Hugs!

    Lots of love,
    Donna xo

  17. amy says:

    Susan, so sorry for this gross injustice! You can never get your thyroid back. But, I believe that through patience and perseverance you CAN get your life back! You probably do not even want to hear it now but, it is so. I do so hope that you find a job and a wonderful Dr to get your thyroid regulated! You are not crazy! Blame that on your thyroid(or lack of one). Blessings to you and I wish you all the best! Amy

  18. Bee says:

    I agree with all the great posts and hope that you, Debra , and Susan take it one day at a time or one hr. or one minute and don’t give in or give up…there has got to be something that you can find positive in your lives-please try. Sending good and happy thoughts

  19. Melissa Travis says:

    I am so so sorry to hear your story. It brings me pain. I have had THE WORST CARE OF MY LIFE at major medical school universities and generally only go to private practices and private hospitals now because of it.

    Please know you have my love and support. Stick around here. Write and blog. Know that you might FEEL CRAZY- BUT YOU ARE NOT CRAZY. You are hurting and sick- but you did NOT DO THIS TO YOURSELF.

    AND YOUR BODY IS SEEKING BALANCE.

    Meanwhile – even if you remove blame and do not try to “find recompense” but just start living again – there will be pain. But you know you can do pain. YOU KNOW YOU CAN DO PAIN.

    The point in all of this is how to do it well. How can you live a meaningful life when all you want is to stop the crazy.

    You have given up on most of the options that are available. I really really hope you try some of the options again. Weight balancing and thyroid drugs and therapy and diet options have all helped– BUT NOT ALL QUICKLY.

    AND YOU KNOW WHAT— they are not instant fixes.

    And you’ve been through the ringer.

    Everyone here can relate and care. We care. We’ve been here for each other and we’re still here for you. Grab on. Keep writing. Blog it out. Find a friend or five and keep sharing.

    You are NOT CRAZY. And YOU CAN DO SAD.

    You CAN DO THIS.
    Because – you ARE doing it.

    I promise.
    Many loving hugs.
    Melissa

  20. Mary says:

    Hi Debra,
    This is so terrible and sad…what was your diagnostic by the way?

  21. Lolly says:

    Hi Susan and Debbie,

    Tryuly horrendous what has happend to you both but you know you really arenl;t alone we all have outr tails top tell of gross megligence byt the medical profession not listeneod too not diagnosed correctly . suan I too lost my thyorid due to inconclusive FNA’s 5 in all in the sapce of 6 months. ENT was pretty sure that my large nodule could be cancer and made it feel that way. It took me some time to decide to have surgery because I was never convinced that it was I think they just couldnl;t mange hyperthyroid aptients and it was much easier for thejm to render them hypo. My results were benign after a full TT and have been struggling ever since.

    Even though I have my off days I wonlt let this diease fucking take me down, it may have me beat sometimes but i will always get up and sucker punch the fucker and get back on track.

    You know being in the medical profession it is very hard to Sue you can try but it isn’t easy, I do think you have a case, it;s getting someone who will take it on and fight your corner and akliot of energy is spent trying when you could try for now on focusing on the things that realte to your present health I think what they did was downright criminal.

    Debbie I am so sorry you feel so low that you feel life is not worh living just comiong here and talking about tells me it’s not really want you want you just want someone around who understand and cares to lose friends family and have no-one to listen to you must be so hard but you know you will never be alone here because most of us understand some of us may even have been where you are right now, the thing is when someone feels that low and they feel that life is just not worth living no matter how many people understand it doesn’t take away those feelings away. I doubt anyone here it trained to hep with that but what they can do is ligen and support but at the end of the day you do really need to talk with someone who has experience with this.

    I am not judgeing you at all what I would love to see is you getting the help you rightfully deserve no-one should be made to feel like you do and not have anykind of support net work that is what you want to build up.

    Lollyxoxo

    I wish i could take your pain and your hurt away but i can’t what i can do though is cheer you up make you laugh get you to focus in other areas in your life.

    I really do feel for you and feel helpless to help.

    2 very sad stories reality of what thyroid disease can do to a person lack/ misdiagnosed or undiagnosed made to feel it’s all in your head so may thyroid peeps had been told this before actually being Dx’d I hope you can both get yoru lives back on track witht he help of this DT and the grea threllas/fellas.

    Sending Lolly positive (((Vibes))) your way hand in there thysista’s keep writing keep connecting.

  22. ashton2190 says:

    like everyone else on here, i am absolutely appalled by the treatment you have received. and as a nurse, i’m sure it’s even more infuriating for you to deal with.

    i’m only hypo (sometimes i feel like my problems are so pathetic compared to everyone else on here) but weight loss has also been completely impossible for me. the only way i’ve ever lost weight is to basically stop eating, and even then i don’t get very far. i get depressed so i stop eating, then when even that doesn’t work, i’m even more depressed. what a cycle.

    i’m planning on talking to a dietitian soon, and hopefully find out from them what a thyroid patient should/should not be eating. if i find anything that seems really helpful, i’d be more than happy to share it 🙂

  23. helena says:

    Do you still check back here? I found your post by looking up unnecessary surgeries on the web. I’m doing this because I had an unnecessary surgery as a child (not thyroid) – greedy doctor and ignorant/uncaring/uninvolved parents – and I’m in so much chronic physical and mental pain over it. Looking for others to relate to as most people have not experienced this. Let me say that you are not alone, and it is unforgivable when others take away our bodily integrity without care – in my case I was too young to stop it. I feel for you.

  24. Carrie says:

    I hope people still check back here, it looks like it’s been a year or so for any posts…And I’m not able to finish reading all the posts right now, (because I can’t stop CRYING)!!!! This is horrible!!! I feel for you Sarah. I found this website by researching misinformed Thyroid. I too have recently been through the EXACT same thing and it’s Horrible!!! I’m only 2 months into recovery from surgery that didn’t have to happen…I will post more if I see that this is still a live post…

  25. Dear Thyroid says:

    Carrie – We post daily, lots of columns and letters. YOU ARE NOT ALONE. Please keep writing and submitting, and connecting.

    Carrie, we are here for you! We don’t want you to feel alone. if you go to the homepage, in the center right column, you can see all the latest posts.

    Wishing you well,
    Katie

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