One reads about misdiagnoses in the medical world but no one truly talks of the frustration, relief and anger that follows after a patient finds out they have been misdiagnosed for years. I, for one, understand that feeling and everything that comes with it –this is my story.
I am 27 years old and have been sick for seven years. When I was 20 years-old I blamed my illness on the HPV Gardasil vaccine, which sent me to the hospital after two days of taking the shot. Following that incident, I was in and out of hospitals for years as they tried to find out what I had. The doctors were baffled and didn’t understand why I was having non-epileptic seizures; I experienced sensitivity to light, syncope, sudden loss of consciousness as many as 2 to 3 times an hour, followed by confusion, heart palpitations, extreme fatigue and pain and weakness in my legs. Although doctors did every test in the book, none of them knew what was wrong with me.
In 2008 I met with a neurologist at Winthrop University Hospital. He immediately admitted me for an MRI and CAT scan of my brain. After several weeks in the hospital the neurologist sent me to Long Island Jewish Hospital in New York, where I was admitted for two weeks for monitoring. After weeks spent in multiple hospitals, the doctors explained they couldn’t find the problem and had no concrete diagnosis. I was confused and frustrated; I knew there was something wrong.
The pain continued to increase; I felt pins and needles throughout my entire body and soon I couldn’t feel my feet or be able to stand. If I tried to stand for a few seconds, I would fall. I tried more doctors, but many of them didn’t feel comfortable treating me. Needless to say, I started to give up. I quickly went from walking perfectly fine, to needing a walker, and then being confined to a motorized wheelchair. In such a short amount of time for a young woman, this experience was horrifying. I couldn’t hold a job or go to college since the pain in my legs and feet was excruciating.
After more tests – EMG, CAT scans, MRI’s, and CTA’s – my lumbar puncture test showed I had fluid in my brain. How could this be I wondered.
In 2010 I went to a rheumatologist and he discovered that I had Fibromyalgia and Peripheral Neuropathy. To confirm the diagnosis several excruciating nerve tests were done. It turned out that this disease caused my immobility for many grueling months. The test results concluded I had nerve damage in my legs, which was preventing me to walk.
After years of tests, scans, blood work, and thousands of dollars in hospital bills, this rheumatologist finally understood my diagnosis. Unfortunately, the seizure-like symptoms were still occurring. My entire family and I were ready to give up in the summer of 2010, when I decided to go to Winthrop University Hospital in Mineola, New York to do Hyperbaric treatment. The doctors gave me Hyperbaric Oxygen Therapy, which was a life-changing therapy. The seizure activity lessened as the weeks passed and I finally returned to college. I was feeling better for the first time in many years.
In the summer of 2012 I began to have severe pain in my neck. At this time I didn’t have a regular physician so I found one and discussed my entire health history with him. The physician was extremely concerned so he sent me to see an oncologist right away. The oncologist reviewed my blood work and sent me to an endocrinologist because of the results. I waited several weeks to see the best chief endocrinologist in the area, when finally I felt some hope. I explained all my symptoms to the doctor including the pain in my neck, my weight gain, and my severe fatigue. He diagnosed me with Hypothyroidism. The doctor put me on a low dose of medication (Levothyroxine) and said, “see you in six months.” Hypothyroidism, I found out, is a thyroid disease in which your thyroid gland does not make enough of the thyroid hormone. Weeks later I found out not only did I have Hypothyroidism, I also have Hashimoto’s Thyroiditis which is an autoimmune disease that attacks your thyroid.
Weeks after this diagnosis, I began to have more pain in my neck and was starting to have problems swallowing food and water. At first I thought it was a cold coming on, but as weeks went by it didn’t subside. I returned to the endocrinologist and expressed my concerns but I was told that nothing was wrong and that I was suffering from a cold. I knew that I didn’t have a cold because I had just seen my regular physician who claimed I was healthy. The endocrinologist wouldn’t issue me a sonogram for my neck, so I called my oncologist who wrote me a script that same day.
In July 2012, I had a complete sonogram done of my neck at the Woman’s Breast Imaging Center located in Garden City, New York. That day turned into a four hour appointment, which was uncomfortable to say the least, especially since following my sonogram I had to be issued a biopsy. Hearing biopsy for the first time in my life was yet another horrifying experience. I remember sitting up on the examination table, crying as my cousin and mother tried to calm me down.
Several days later I received a call from the doctor in the imaging center. I knew right then and there, something had to be wrong. The doctor said my name, then paused. My heart skipped a beat as I waited for the news. “Danielle, you have Thyroid Cancer,” he said. “You need to be seen immediately at a cancer center to treat the two tumors in your body.” Tears streamed down my face. I couldn’t comprehend the words that were just said to me—I have cancer?
I realized then that the endocrinologist not only misdiagnosed me but didn’t pay attention to me when I was in pain. He brushed my symptoms and my concerns off as if I didn’t matter. Needless to say, I was livid.
Two days later I got a formal apology from the endocrinologist. I was shocked and impressed that he called. He apologized for misdiagnosing me and told me that if there was anything he could do to let him know. “I assume you do not want to come back to our office, but if you need anything I will be happy to help,” he said. I told him that the one thing he could learn from this is to listen to his patients. He took this advice with an embarrassed silence.
It took me four days to figure out where I should be treated. I was overwhelmed by the words, ‘you have cancer” and understood these three words would change my life completely. After thorough research, I decided to get treated at Memorial Sloan Kettering Cancer Center located in New York City. I had an amazing surgeon who did a total thyroidectomy and removed several lymph nodes that were cancerous. In December 2012, I started my treatment, which included Radioactive Iodine because of the spread. I had to be put in isolation for a few days because I was radioactive. While the experience was scary and unnerving, I owe a big thank you to my amazing surgeon and to my wonderful doctors at Memorial Sloan Kettering for saving my life. It was a relief knowing that my doctors had my best interest in mind.
Knowing something was wrong with my body when the world kept telling me otherwise was a lonely and frustrating–especially for seven years. Although the time was tough, it also taught me that I had to become an advocate for myself. Not only did the diagnosis of Papillary Carcinoma Thyroid Cancer change my life, but the journey itself did as well. I learned to trust my instincts, and that I am stronger mentally, physically and psychologically than I ever thought possible.
PLEASE GET YOUR NECK CHECKED!!
Below are resources that help those suffering of Thyroid Cancer:
1. Thyroid Cancer Survivors Association- http://thyca.org
2. Light of Life Foundation – http://www.checkyourneck.com
3. Follow Danielle’s Journey: http://findinghopewiththyca.blogspot.com
Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.
August 26th my 21 year old daughter had a Total Thyroidectomy removal surgery. Shortly after the Gardasil 9 (HPV vaccination) she struggled with constantly feeling tired, struggling to breathe at times, joint pain, and more. After years and lots of visits to her doctor she was sent to a thyroid specialist, we learned that her thyroid wasn’t working properly anymore. For four years they had been able to adjust medication to help the thyroid function better but never at 100%. Early this year the medication stopped working all together and her symptoms are getting worse. To list a few: struggling to breathe, which causes anxiety, struggling to stay awake during the day, waking up every 30 minutes at night because the thyroid gland is swollen and closing off her airway, lightheaded, sweating, and more. The Specialist removed the thyroid fully so it doesn’t suffocate her.
I received the first dose of gardasil in 2011. I had just gotten a regular pap done (results were normal and healthy) when the doctor suggested I get the vaccine. I was 24, perfectly healthy, competitive ballroom dancer and had never needed treatment for anything. Within 24 hours I took myself to the ER for an excruciating headache. 48 hours later I was trapped in the bathroom with what felt like a rabid raccoon trying to scratch its way out of my insides. Within 30 days I had gained 20lbs all the while I was starving myself because I couldn’t handle the pain that ensued after eating. How does one gain weight when they’re not eating?? 60 days after the shot I had gained even more weight, I was now approx 40lbs heavier than I was when I went in to the doctors appointment. I had chronic migraines, indescribable abdominal pain, fatigue and brain fog. I went back in to see the doctor that recommended the shot, to see why my abdomin and specifically my uterine area was causing me so much pain. She suggested another pap. Then ordered a colposcopy. Then ordered a biopsy. The results came back with stage 3 cervical cancer—I had gone from perfectly healthy to cervical cancer and skipped right past dysplasia and stages 1 and 2 in under 90 days. Fast forward to 7 years later and I am now 70lbs past my normal, live with fatigue, excessively painful endometriosis, hypothyroidism (though Hashimotos has yet to be diagnosed since no physicians want to be bothered with the cause of this damage, ie a vaccine). Detoxing, clean eating, avoiding synthetic hormones (including carageenan and other hormone disruptors), heavy doses of vitamin C and acupuncture have healed the IBS, migraines, a large portion of fatigue and the endometriosis. But unfortunately I still struggle with all of this extra weight that won’t come off regardless of what I do. Gardasil absolutely caused my decline in health and I have the time stamps to prove it—thank God I only got 1 dose, I don’t think I would have lived past the 2nd round.
Hi, I took 8 years ago 3 shots of gardasil. Now (8 years later) I have goiter, and the biopsy indicated follicular cells in my thyroid. And also I feel pins and needles too, in my left arm and leg since I had finished the shots.
The thyroid is often hit by this vaccine, sometimes it is immediate, sometimes it takes years before it is recognized. Few talk about the thyroid connection. We have some articles on the topic. Neuropathy is often common with both. Would you be interested in sharing your story so that we can get more information on the longer term effects of the vaccine and thyroid issues in particular?
I am also a mother of a daughter seriously injured by Gardasil. My daughter also went on to develop two autoimmune diseases before the age of 14: Hashimoto’s Disease and Dysautonomia/POTS. She has suffered everyday since receiving only one jab of Gardasil in September 2010 with chronic infections/viruses, pain and other debilitating symptoms. Hasimoto’s and Dysautonmia/POTS is a very common diagnoses among the HPV vaccine injured. This vaccine causes a chronic dys-regulation of the immune system, the levels of inflammation are very high and persist for years and the body becomes de-mineralized. This vaccine is has devastated so many young lives of children that continue to suffer for years after receiving this vaccine. Lets not forget about those families that had to bury their children who were killed by this vaccine. Will our government step up and remove this vaccine from the market? Absolutely not. The US government receives patent royalties from HPV vaccines. Instead Merck plans to bring a new vaccine called Gardasil 9 to market in early 2015. This vaccine contains over two times the aluminum of the old Gardasil vaccine. Many of the injured suffer from heavy metal toxicity. What did our government do to ensure that Gardasil 9 is proven safe. Nothing…Gardasil 9 was also fast-tracked through the approval process with studies conducted by the vaccine manufacturer!
In 2009 I wrote a book on the HPV vaccines (in Dutch).
My research results scared me no end. They still do.
All my predictive questions have become gruesome reality and then some…
I’d rather been dead wrong.
Girls are potential future mothers.
My heart goes out to all of them who have no more future and may never become a mother…
Is it possible to share the results in English? I would be so interested to see and read.
I developed Hashimoto’s Thyroiditis within 2 months of receiving the third shot for this vaccine. Scary stuff. Consult a lawyer.
Z, you are only the second case of thyroid disease post Gardasil that we have come across. Have you found any other women with similar experiences?
I had the shot when it first come out. A month ago I had my thyroid removed because I had a cancerous nodule on it… Did you ever find anyone else with the same thing??
No, but I suspect there is a link. Would you be interested in sharing your story? Perhaps more women might come forward.
My son got Raynauds and it took 2 years to get that diagnosis and then a year after that was told he had hypothyroidism. So I don’t think parents are connecting the dots and I am livid. I didn’t even know he got the shot as I was against all new vacinnes at the time. And he only got the first shot. I am sure I didn’t approve that one but was approving a different vaccine.
Hi
Im suffer from Tiroidits right after the second dose of my vaccine..but my specialist doesn’t agree with it and says it’s not true..i have nodule type 5.and they say it’s malignancy.i don’t know that what to do for the third dose.can you help me?
This is so heart breaking. My heart goes out to you. I am so glad you are able to vocalize everything that has happened to you. SO much of your story is just like my daughter Alexis’ life after gardasil…She is also coming up on the 6 year mark of the beginning of her life changing nightmare. Alexis however can not vocalize as well because she suffered serious brain damage do to the encephalitis that gardasil caused. Her mental state is that of an 8 yr old.
Bless your heart. I am so glad that you have such a strong family support.
http://sanevax.org/samantha-u-s-a/
My daughter could be writing the exact same story. This is horrific and Merck must pay for what they have done. However we never get any diagnoses. My daughter did not have a menstrual for 5 years. She is sick and the doctors are horrible to us.
They say it’s in her head. Conversion disorder because of all the fainting and paraplegia. I pray she doesn’t get cancer from this crap.
On another note about Gardasil vaccine injury and this woman’s symptoms.. Our daughter has had almost exactly these same symptoms following the Gardasil vaccine, the same distancing by doctors not wanting to get involved, the ignoring of a young woman in immense pain.. It has been nearly six years since the seizures, neuropathy, severe body pain, plus finding out she has Gastroparesis as well, began. She began seeing a doctor in the past eight months who has placed her on IV therapy which has helped get her moving again. She still has no feeling in her legs, but much of her balance and strength are returning! Why do patients have to wait so long for a medical doctor to actually listen them? We pray this young woman finds complete relief!
That is horrible. This is becoming all too common. Would you like to share her story in a blog post. It may help another mom and daughter make the decision about whether or not to get the vaccine. For more information about submitting a story: info@hormonesmatter.com
So sorry this girl endured so much, But in all my research and speaking with others as well as having a daughter Injured from Gardasil, you can be assured the vaccine did this to her. So many are experiencing what this young lady has, with No help, The FDA & CDC won’t listen, Merck could care less and 1000s are suffering. truthaboutgardasil.org