September is thyroid cancer awareness month, what better month for me to tell my story and spread the word. I wanted to write this not to get sympathy but for people to understand what an impact your thyroid has on your body. The easiest way to put it, as my doctor said, “Your body is the United States and your thyroid is the president.” I also have an auto immune disease called Hashimoto’s. I believe I have been misdiagnosed for at least 26 years of my life, with the end result being thyroid cancer. My thyroid was removed at the end of January 2013. I’m currently seven months cancer free and I fight like a girl.
I went in for my yearly physical on November 8, 2012, and like most of us I will never forget that date. At the normal yearly physical this past year, my doctor was concentrating an awful lot on my neck. At that time I knew little about what a thyroid was, what it does, or where it was for that matter. I didn’t know that all thyroid numbers are not checked in blood work either for a yearly physical. My doctor’s office only checks three out of six normally. My doctor decided to do an extensive test (which my insurance company didn’t cover), we got the results back, and sure enough my body was producing antibodies. They should be under 60 and my great number was 1,276.
“What’s an antibody,” I thought? Just another thing I didn’t know, but it’s a sign of your body self destructing. The process began; extra blood work, ultra sound, specialist, biopsy (undetectable), second opinion specialist, surgeon, and the end result being surgery January 29, 2013, yet another unforgettable date. Surgery went well and the surgeon wasn’t too concerned with it coming back as cancer, it was a 20% chance he said. They did a biopsy after surgery. The surgeon was shocked and said, “Shannon it is cancer.” I was probably too drugged at the moment to comprehend what had actually happened. My parathyroid wasn’t working so my one day hospital visit turned into a three day visit. I was released three days later, able to go home to recover. I went through surgeon follow-ups, specialist appointments, blood work, thyrogen shots, and radioactive iodine all before the end of April 2013.
I reached out to the first specialist I was referred to in April 2013. I should have known better as she was the specialist that wanted to wait and revisit in six months, based off the undetectable biopsy before my surgery. I’m thankful I decided to get another specialist’s opinion and not listen to her advice. I kept telling them something was wrong. I found myself lying on the floor at night just asking God to take my life, as I didn’t have it in me to fight anymore. I reached out to someone that is now very close to me. He helped me try and focus, to get the strength, and to fight back. I’m thankful every day that he was there to pick me up when I was struggling. I started doing my own research, researching doctors in my area that specialized in auto immune disease and thyroid cancer. I ended up finding one and getting in to see her within a few weeks. The nurse checked my blood pressure a few times and said she will be right back. The doctor immediately came in and saw my blood pressure was at 188/122, I knew something wasn’t right. My body was screaming at me, so I found a doctor that was concerned and willing to listen. I’m thankful for finding a new specialist that isn’t concerned with my numbers, but what my body is saying. Since I have an autoimmune disease my thyroid blood work numbers are never correct.
I think surgery was the easiest part of my president being removed from my body. I am amazed to find myself searching for my old self. Not knowing who I am, I’m questioning myself about my life and who I want to be. The girl before my president was removed just doesn’t exist anymore. I still deal with this daily struggle, it’s a process of increasing medication every four to six weeks, as my numbers are still not right. I have learned to have patience throughout this process. Every day is a new day and I never know how I’m going to feel. I take one day at a time so I don’t get overwhelmed, frustrated, or break down for that matter. I can’t tell you the amount of joint pain, swelling, water weight, hair loss, anger, rage, frustration, weight gain, muscle cramps, brain fog, and lack of concentration I deal with, usually on a daily basis. That list is what I can remember, there are a few others but I will spare the details.
My disease has caused me throughout the years to be diagnosed with an abnormal white blood cell count, to have extensive tests done, be treated for ovarian cysts, abnormal menstrual cycles, miscarriages, one still born, pre-cancerous cells on my cervix, one reaction with hives, anxiety attacks, depression, fatigue, yearly bronchitis, multiple cases of walking pneumonia, unknown number of UTI’s , IBS, and iron deficiency. It has caused me socially and mentally an unknown number of childhood memories lost (minimal memories before age 12), numerous missed days of high school, numerous failed friendships, numerous failed relationships, one failed marriage, one failed engagement, years of missed work, unknown amount of lost income, unknown number of social functions missed, withdrawn from numerous family functions, withdrawn from family in general, many hurtful words said, and wrong decisions made. Most, but not all, of these symptoms I have listed I believe stem from my misdiagnosed autoimmune disease of hashimoto’s and low thyroid function. I do not have any children, not that my ex-husband and I didn’t try, but I think that my undetected autoimmune has lead to infertility as well.
I struggle daily, but push forward, wanting nothing more than to reach out and raise awareness. I want to help people avoid going through years of misdiagnoses, frustration and struggles like I have. So please learn how to check your neck, ask your doctor to as well during your yearly visits, and request all six thyroid numbers to be checked.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
God what a story, and even though I still have my thyroid, I relate.
I feel for you and think you are a wonderful person for caring so much about raising awareness.
Like you , I have paid a heavy personal price along with the physical and I wish to God someone had said something to me years and years ago so I could have avoided all the insanity along the way. Anyways, day at a time now and I hope I will be well again someday.
Best of luck on your journey 🙂
THANK YOU Mary,
Stay strong and listen to your body if anything. You need to be your own Dr., get opinions and do your research. And thank you for the sweet message I will reach out and try to help others any way I can!!! Good luck on your journey as well!!
My daughters ANA is over 2000 were still struggling with a diagnosis, Her endo did a ultra sound her thyoid looks like swiss cheese ,her docs word and her right side on her lymph nodes area all messed up, please email me with what u think. She is only 22 has been suffering bad since 2011. I have hashimotos.
Oooo Lorie honey, where do you live?? We need to find her a new Endo that will listen to her body and struggles and someone to help you as well. For her to get some relief and some help and for you to make sure your Hashimoto’s is not attacking yours as well. Reason being is you could save your thyroid. Please message me back I have reached out to a lot of support groups and they have recommended Dr’s that will listen all over the US. Let me help you.
I am in south Florida and interested in the dr referral. Thanks for keeping us motivated to find a cure!
I think surgery was the easiest part of my president being removed from my body. I am amazed to find myself searching for my old self. Not knowing who I am, I’m questioning myself about my life and who I want to be. The girl before my president was removed just doesn’t exist anymore.
YES! THIS! Thank you for expressing what I’m just too tired and worn out to express anymore.
I was diagnosed in 2005 (although, like you, misdiagnosed with other things for decades earlier) with pappilary and had a total thyroidectomy. Easy peasy, the doctors assured me. If you are gonna get cancer, this is the one to get!, they actually say. You can go right back to your life.
Uh, wrong. I never got back to my life. And it was a pretty darn vital active life, as a career woman and mother of 3. I lost the career. My husband divorced me. The kids have grown up and moved out, still complaining how I was “out of it” for the last years of their school lives. All my friends are tired of how cranky I’ve become and don’t call. It’s OK because I don’t want to go out, anyway, and I can’t drink anymore. Like I need something to make my metabolism even slower.
Oh, they paralyzed my vocal cord, too. I now have asthma, from aspirating things I eat or drink into my windpipe via my open vocal cord. So I’ll just have to live with the knowledge that I have COPD and can now add “lung disease” to the things my thyroid cancer gave me.
Recently I felt a lump. My thyroglobulin levels are off, says my endo, and I’m scheduled for a pet scan, I think it is. I don’t pay attention anymore — scan me, MRI me, cut me, radiate me, whatever. I know, lousy attitude. But my endocrinologist is great so at least there’s that.
Anyhow, I just wanted to say RIGHT ON to what you said. You’re not going to go “right back to normal” after thyroid cancer, no matter how much you want to or how much some clueless doctor tells you that wil happen.
But like you, all I can do is keep walking. I’ve been kept around for longer than I thought, so I must have some use somewhere.
Keep up the good posts. And I wish you nothing but health and happiness for ever.
Awww thank you so much Nancy, I think a lot of people are truly blind what it does to your body! It’s hard at times to stay positive but I will keep fighting for us. For “US” to be heard , maybe not understood but listen to us we are screaming for help. I wish and hope for you wellness and happiness as well and reach out to support groups they do help.
I am scheduled to have my thyroid removed on 10/14. Hashimoto’s has made my life a living hell for most of my adult life (I am 60). and has destroyed my immune system to the point that I cannot tolerate most medications. My thyroid is enlarged and causes me a great deal of pain, as well as a choking sensation. If I could take anti inflammatory medications, pain meds. or antibiotics I wouldn’t even consider surgery. My family physician doesn’t believe in doing blood tests, she prefers to go by symptoms, and she has told me repeatedly to get it out, I think because she’s tired of listening to me cry about the pain. My surgeon doesn’t really want to operate because he says I will still have Hashimotos disease and the symptoms that go along with it………minus the pain. I sure wish I knew who to listen to. Right now I’m so confused! Fatigue, muscle pain, low grade fevers, headaches, digestive issues, and depression (not to mention hair loss) have been a part of my life for so long that I think I would do anything for even a little bit of normalcy. Will surgery help me?
Thank you for the message, if you want my honest answer YES I would have the surgery for the reasons of it being enlarged and causing you choking sensation. Yes the blood work numbers will be wrong because of Hashi but it still gives them a guide line every time they test on what’s working for you and what isn’t. Unfortunately for us A LOT of the symptoms will never go away, it’s a battle to find what will work and what won’t. Don’t give up hope though, you need to be strong and fight back as you are the only one that knows how your body is feeling. I thought the symptoms growing up were normal to me as well. I’m working with my Dr on changing things adding T3, changing my foods and trying to stay away from processed and gluten. Stay strong Marge your not alone!
Hi Amy, this is a list that was put together from patients referring their Dr.’s. Thank you, Shannon
Thank you for the message, here is the list I hope this helps! Thanks, Shannon
Amy, It won’t let me copy and paste a website in here but if you email me directly I can send it to you. firstname.lastname@example.org
You need to make video about your experience omn Youtube
I have Hashimotos. I was treated for Crohns I didn’t have, depression, anxiety…I also didn’t have.
I look back and I know that this started after I had my third child. I started going hyper. I was a shaking, crazy mess. But I lost a ton of weight and looked great. I can look back and see where I was really a wreck. At the time I thought I was going crazy. At one point I thought I was having a nervous breakdown. My sister confronted me and I had no answers. I was exhausted and living with a headache. Working nights and stressed.
I can look back now, and tell you when I was super hypo and super hyper. My sisters haven’t talked to me in three years. They said they thought I was “unstable.” In that last three years before I was diagnosed. I had back surgery (at age 33) and I got super sick, lost 40 lbs in 5 weeks. After I healed…a year went by and I actually ended up in the hospital for a week…after collapsing. I still wasn’t diagnosed with Hashi’s…but Crohns.
Since I’ve been on thyroid replacement when I need it and off when I don’t (propronol to lower heart rate when I’m hypo) I feel so much better. I went back to college and I’m on the Dean’s list. But now they think I’m using my Thyroid issues to explain my behavior. Like cancelling weekend plans with them when I was exhausted. Like falling asleep after making them all Thanksgiving dinner…and not waking up until they left. Like saying I had a headache all the time. My visits to the ER for migraines. Or when I was hyper and couldn’t act like a normal person.
When I was finally diagnosed my antibody was 1800. My white blood cell count was running between 18-30k. My sisters…don’t want to hear any of what I’ve learned. At this point I am dead to them. I wonder, if my nodules turn to cancer…if then they’ll get it.
I don’t see an endo. I can’t afford it right now. I am on 100 of syntharoid and call the doc if I feel screwy. I’ve had a sore throat for three weeks and I’m worried about it, that’s how I found you here. Thanks for sharing. I’ve felt very alone with all of this.
Thanks for sharing your story. I was diagnosed with Hashimoto’s after suffering with the symptoms for at least 6 years, maybe longer. I also have been diagnosed with Lupus (SLE) but I am not sure if I agree with that diagnosis. I think the bulk of my problems stem from my thyroid issues. Recently, my doctor sent me for an ultra-sound. They found a solitary hyper echoic lesion with calification on my right lobe. I absolutely do not want this lesion to be malignant, but am scared to death that it is. The left lobe has signs of damage due to my antibodies attacking it.
None of my friends or family really get it… They don’t understand that I don’t want to be in constant pain and have all the other issues that come along with Hashi’s. I told my husband that I feel like I constantly have the flu.
Since my thyroidectomy I have been doing extensive research into autoimmune diseases such as Hashimoto, Graves, Lupus and all the others. I believe the treatment of these diseases are misguided at best. The underlying cause of these diseases lies in the presence of Mycoplasma organisms that cause mutations in the body and cause the body to destroy itself or have the autoimmune reaction. The sad part is that taking Synthroid or some other thyroid hormone replacement, having a thyroidectomy, or even radioiodine treatment will not stop the progression of these diseases. The mycoplasma organisms that are causing the disease need to be ablated. This can be done with a long course treatment of antibiotics on a cyclical basis. Shame on the medical profession for allowing the progression of disease and making so many people suffer under managed care.
Shannon that is an incredible story of survival from something I can’t completely fathom..I do however relate to a lot of your symptoms..like anxiety,depression missed years of life wasted because I never got the proper treatment for my Post Traumatic stress syndrome and just being labeled crazy while in an abusive environment including severe trauma I blocked out as a child….Girl you are so strong and I’m so glad we met up again as courageous grown women..God bless you love ya lots,Laura
I am highly positive you have the MTHFR defect. This is a genetic defect that I also have, pretty much all of your symptoms, which are very similar to mine, point to that. Have you been tested? Do you work with a doctor that could help you with that.. ? Good luck..