thyroid cancer

Lupron, Thyroid Disease, and the Broken Scales of Justice

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Even though women being prescribed Lupron (leuprolide) have, understandably, no clue about its adverse thyroid effects, it is no secret that Lupron adversely affects the thyroid gland. (The same could be said for adverse effects from Lupron on many other organs and bodily systems, but the focus here will be on the thyroid.) For decades, a wide variety of adverse thyroid effects during or following this drug have been reported to the FDA: according to RxISK.org’s compilation of Lupron FDA Adverse Event Reports (‘AERS’, for the years 2004 – 2014), Thyroid cancer, Hypothyroidism, Thyroid disorder, Thyroidectomy, Hyperthyroidism, Thyroid neoplasm, Thyroid function test abnormal, Autoimmune thyroiditis, Thyroid cyst, Blood thyroid stimulating hormone increased, Blood thyroid stimulating hormone abnormal, Blood thyroid stimulating hormone decreased, Anti-thyroid antibody positive, Thyroid cancer metastatic, Biopsy thyroid gland abnormal, Follicular thyroid cancer, Thyroiditis, and Thyroiditis subacute have all been reported (search “thyroid” in “Side effects reported” here; also Open Vigil, which contains FDA AERS for the years 2003 – 2013, can be searched.)

Different Warnings for Different Countries

For decades foreign labels for Lupron have identified “thyroid enlargement” as an adverse event ( i.e. 1998 Australian label for “Lucrin [Lupron]”, MIMS Annual 1998, Australian Edition, page 9-804; also 2010 Danish label – Danish Medicines Agency, Product Resume for “Procren [Lupron] Depot”). As early as 1986 the US product label for the initial formulation of Lupron (5 mg/mL vial, administered as 1 mg daily subcutaneous injections) identified “thyroid enlargement” as an adverse event (1986 Package Insert No. 3626, “Lupron/leuprolide acetate 5 mg/mL. Manufactured for TAP Pharmaceuticals by Abbott Laboratories, Rev[ised] Nov. 1986”; 1992 Physicians’ Desk Reference [PDR] , “Lupron/leuprolide acetate 5 mg/mL”, p. 2310). The US product label for the intramuscular injection of monthly Lupron Depot 3.75 mg (and other depot dosages) likewise identified warnings for thyroid enlargement (i.e., 1995 PDR, “Lupron Depot 3.75 mg.”, p. 2506; 1996 PDR – “Lupron Depot 3.75 mg”, p. 2558.) Between 2004 and 2012, there were 22 reported cases of thyroid cancer, and Lupron was considered “highly suspect” by a number of physician opinions, and according to RxISK.org’s FDA AERS database, there’s been 6 more cases (search “thyroid cancer” in “Side effects reported” here).

But, despite this history, all thyroid adverse events have been removed from the current labels of US Depot formulations of Lupron, and no thyroid warnings have been identified since the mid-2000’s – i.e., the current Lupron 3.75 mgs product label as well as the current labels for other depot dosages no longer contain any mention of thyroid adverse effects. The daily 1 mg formulation of leuprolide continues to identify warnings of thyroid enlargement and thyroid nodule, and foreign labels for Lupron continue to identify adverse thyroid effects, but the labels for US Lupron Depot formulations (which are prescribed the most for women with endo and fibroids) are devoid of any warning.

In the Courts

It is worthwhile here to revisit the atrocities committed during the only Lupron lawsuit to make it to trial (Karin Klein v. TAP/Abbott, Case 2:08-cv-00681-RLH-RJJ, 2011) – many prior lawsuits having been quietly settled with secrecy agreements. Karin Klein, at age 17, was prescribed Lupron Depot 3.75 mgs in 2005 when Lupron’s label no longer contained the prior-listed warnings about adverse thyroid events. Karin developed, among others, chronic autoimmune Hashimoto’s thyroiditis. Belatedly learning of Lupron Depot 3.75 mgs’ prior US label warnings of adverse thyroid effects, as well as the prior and current similar warnings in foreign labels, Klein sued for failure to warn.

The judge at trial refused to allow the jury to learn of Lupron Depot’s pre-2005 US labels warning of adverse thyroid effects; the judge refused to allow the jury to learn of Lupron’s past and current foreign labels identifying adverse thyroid events; and the judge refused to allow the jury to learn of published medical literature identifying Lupron’s adverse thyroid effects (See Judge’s rulings, “Document 265, filed 07/25/11, page 13 of 40”, which can be found on p. 101 in this document). The judge would only allow the jury to learn of the 2005 US label. Moreover, Abbott’s mendacious defense medical “expert” stated under oath that “it was absolutely biologically impossible for Lupron to affect the thyroid gland. No textbook, no article has ever supported that contention. It’s simply biologically impossible.” (See “Page 20 of 131” here). A simple PubMed search shows this “expert statement” to be absolutely false – and this is without-a-doubt perjury (here, here, here and here). The first published report that “demonstrate[d] the association of thyroid disorder with leuprolide” occurred in 2000 – five years prior to Klein’s Lupron Depot prescription. Rhetorically speaking, exactly how does a paid “medical expert” get away with outright perjury concerning Lupron Depot’s – or any other drug’s – known risks?

This court’s curious restriction of limiting disclosure to only the 2005 Lupron Depot label (devoid of any thyroid warning) created the illusion for the jury that there were NO thyroid adverse effects from Lupron Depot for Klein to have been warned about — and so by a legal sleight of hand, Klein’s claim of “failure to warn” was made to disappear. The jury, unknowingly dis-informed and ‘educated’ in misinformation only, believed that it was ‘biologically impossible for Lupron to affect the thyroid gland’, and the jury found against Klein and found in favor of the drug company.

An appeal – bewilderingly – resulted in the Circuit Court making false statements and misstating facts. As argued on appeal by Klein’s attorneys:

“[Klein was] entirely shackled in the evidence she was allowed to present. It is particularly galling to have qualified (and expensive) expert witnesses on hand to testify, only for them to be shut down before the jury and precluded from offering competing expert opinions. The pattern shown by the record [of the Klein trial] is deeply disturbing. Virtually every discovery and evidentiary ruling, and other orders of significance, went for one party [TAP/Abbott and never for Klein]. … Such a one-sided proceeding was not the fair trial our system demands.” The multitude of rulings against Klein’s request for admission of evidence can be found delineated the afore-mentioned in “Document 265, filed 7-25-11”.

But the Circuit Court, in a 2-day deliberation, concluded: “… The district court did not abuse its discretion in excluding the challenged Lupron labels because they all contained information regarding the side effects of different formulations of Lupron, rendering them insufficiently relevant, unduly prejudicial, and likely to confuse the jury.” Here the Circuit Court misstates facts and conveys the opinion that “the pre-2005 US Lupron Depot 3.75 mg label for endometriosis” is a “different formulation” from “the 2005 US Lupron Depot 3.75 mg label for endometriosis”. This is utter hogwash from a high court – “Lupron Depot 3.75 mgs” is identical to “Lupron Depot 3.75 mgs” regardless of the year of the label. And it should not be terribly difficult for anyone (including the Court) to comprehend that the drug comprising the initial 1 mg. daily-injected subcutaneous Lupron was subsequently put into a “depot” (“long-acting”) ‘delivery form’, allowing one intramuscular injection to slowly deliver the same drug — Lupron – over the course of one (or three) month(s). The courts had access to the 2010 Danish label (Klein v. TAP/Abbott, Document 175, filed 06/12/11) in which it is stated “Leuprorelin [leuprolide] acetate is released at a constant rate over a period of 4 weeks (3.75 mg) or 12 weeks (11.25 mg) … which is equivalent with what is seen with a daily injection of 1 mg leuprorelin acetate.” (To date, I have not located that same statement in a US Lupron label.) This appellate court concludes that “Klein has not even remotely established that the district court exhibited such a high degree of favoritism or antagonism as to make fair judgment impossible.”

Denied her right to a fair trial a second time, Klein petitioned the US Supreme Court. One would (and should) assume the Supreme Court would inherently recognize the serious ramifications and public health impact of a case (any case) where perjury of the known dangers of a drug was committed by a defense expert (effectively hiding this information from the jury and ensuring a defense ‘win’), and where a Circuit Court completely misstated facts (upon which it had relied to deny Klein’s appeal). But, in fact, the denial of a plaintiff’s right to a fair trial, the denial of a jury’s right to truthful and accurate expert medical testimony, and the denial of society’s right to expect that court rulings will be based on authentic factual information were all issues the US Supreme Court deemed unworthy of review.

Broken Justice: Precedent for Medication Adverse Events Cases

These circumstances resulted in a devastating miscarriage of justice – not just for Karin Klein, but for all Lupron victims – and to society at large as well. What kind of precedence could this Klein verdict have upon future litigation – with this or any other drug? In fact, lawyers throughout the US, with potential plaintiffs seeking redress post-Lupron, were closely following the Klein case, and had Klein prevailed the floodgates of litigation were poised to spring open. But by securing a defense ‘win’ via, in my opinion, a multitude of highly questionable actions, those floodgates were slammed shut. (In May 2015 an RN disabled post-Lupron filed a lawsuit, and this case is presently making its way through the court system.) At least a few ethical and powerful legal experts should be examining the events in the Klein case – it could (and should) become renowned as a classic case of injustice personified. (Links to additional court documents and further details on the Klein case can be found at bottom of page, left column).

What does it mean when a young woman’s health and life are irreparably damaged and there is no recourse? How does a disabled victim fight against a system that has clearly indicated it is obfuscating and is the antithesis of justice? How does a society ensure that truth prevails, and harmful effects of drugs are exposed rather than shielded?

Recently, in attempts to achieve transparency in clinical trial data, many drug companies have put their clinical trial data online. The endometriosis clinical trial data for Lupron 3.75 mgs remains under a court seal – ensuring this data will never see the light of day.

There are many, many questions, and many, many victims, but as of yet – there are no substantive answers.

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This article was published originally on January 20, 2016.

Image by jessica45 from Pixabay.

Vitamin D3 and Thyroid Health

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The benefits of vitamin D3 garner a plethora of glowing press these days but little information has been reported about how this essential nutrient may be associated with thyroid disorders. An alarming number of Americans—over 25 million—suffer from thyroid disease. Women are four times more likely than men to develop a thyroid disorder. The thyroid, a butterfly-shaped gland located in your neck, regulates your metabolism and affects every cell in your body. When your thyroid is not working properly, your body becomes unbalanced, potentially causing symptoms including weight gain or loss and chronic fatigue as well as autoimmune disease and cancer. Let’s look at how vitamin D3 may affect thyroid health:

Thyroid Hormonal Balance

Vitamin D receptors (VDR) are present in the cells of the pituitary, the pea-sized gland located at the base of the brain that controls your thyroid. The pituitary produces a hormone called thyroid stimulating hormone (TSH) that signals your thyroid gland to make thyroid hormone (T3 and T4). Thyroid hormone constantly circulates throughout your body, regulating metabolism. Either inadequate or excessive thyroid hormone can wreak havoc to your health, culminating in hypo- or hyperthyroidism. Understanding the regulating effects of VDR in our cells, I surmise that the amount of activated vitamin D3 in the pituitary’s VDR may be connected to the balance of thyroid hormone.

Autoimmune Thyroid Diseases

Adequate levels of vitamin D3 may protect the immune system from attacking itself. Low vitamin D3 levels have been linked to autoimmune thyroid diseases including Hashimoto’s and Graves’ thyroiditis.

Discovered one hundred years ago by a Japanese physician, Hashimoto’s disease is caused by abnormal blood cells and white blood cells constantly attacking and damaging the thyroid. About 95 per cent of Hashimoto’s disease patients are women. A study published in a 2011 issue of the journal Thyroid revealed that 92 per cent of Hashimoto’s thyroiditis cases had insufficient circulating vitamin D3 levels.

Ten times more likely to develop in women than men, Graves’ disease is caused by antibodies that overstimulate thyroid hormone production, causing hyperthyroidism. Researchers, who investigated Japanese female and male patients with Graves’ disease over a one-year period, found a high prevalence of woefully low circulating vitamin D3 in the female patients compared to the male subjects.

Thyroid Cancer

Incidences of thyroid cancer have doubled over the past four decades. The likelihood of women developing thyroid cancer is three times greater than for men. Activated vitamin D3 regulates cell differentiation, cell proliferation, and cell death. If these vital functions go awry, cancer may develop. Epidemiological studies indicate a link between vitamin D3 and thyroid cancer. Vitamin D researcher W.B. Grant, Ph.D. published a paper in a 2012 issue of the journal Anticancer Research that indicated an association between solar ultraviolet B, vitamin D3, and cancers including thyroid.

A relatively rare form of thyroid cancer—medullary thyroid cancer—originates in the thyroid C cells where a hormone called calcitonin is secreted. Calcitonin’s functions include stimulation of vitamin D3 production in the kidneys. The measurement of calcitonin is a diagnostic screening tool for medullary thyroid cancer. VDR are present in the thyroid C cells. Understanding the powerful effect of activated VDR on cell regulation, I hypothesize that activated VDR in the C cells may possibly prevent the development of medullary thyroid cancer.

In conclusion, recent medical literature suggests a connection between vitamin D3 and thyroid health. However, additional research is required to determine if thyroid dysfunction may cause vitamin D3 deficiency, or low vitamin D3 status may contribute to thyroid disorders.

Copyright ©2012 by Susan Rex Ryan, all rights reserved.

This post was published previously on Hormones Matter in September 2012.

Gardasil and Thyroid Cancer: A Personal Account

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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.

Personal Story: My Thyroid Cancer

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I am a Professor of Economics at Vanderbilt University, VU. I teach and do research. My life is my work and my family. Inside me there is Myrna Holtz, a kid from very humble beginnings on a small farm in rural Alberta, a nerd who loved math puzzles and books but had few of either. Through my own research and through helping others with theirs, I want to contribute to our ability to understand social and economic interaction. I want to be close to my family and now to increase awareness of thyroid cancer and its potential effects. Here is my story.

Some History

In 2008 and 2009 I felt fatigued.  My home treadmill rested, unused. In September 2009, my VUMC (VU Med Center) physician palpated my thyroid and detected no problem. Two months later, after a quick swipe of my throat, my gynecologist found that my thyroid was enlarged. We both notified my VUMC physician. He responded (recorded on a VUMC web interface for patients) with, effectively, “See you when you next come in.” I thought, “Oh, that’s good, no problem then. Maybe I had a cold.” But as time progressed, I pressed and pressed again for an appointment with my physician. Finally, in mid-May 2010, after five and a half months, I had an appointment. When my VUMC physician palpated my thyroid, he immediately detected the enlargement and ordered an ultrasound, which I had the same day.

Too Busy to Call: Hearing about my Thyroid Cancer from a Stranger

A few days later, out of the blue, some unknown person phoned to schedule an appointment for me with an endocrinologist and to advise me that I would probably need surgery. What! How could something treated so casually by my VUMC physician be serious? Was it really? If so, why had my physician not seen me sooner? Why had he himself not called? Maybe it was only another surgery opportunity.

My former VU physician always called me “Myrna”. I called him “Dr. Hock”. A trusting patient is like a small child who places her hand in the hand of a benevolent, caring adult. The asymmetry in use of titles reflects this relationship of trust and confidence; the patient wants to be confident that the physician is competent, knowledgeable, and will take care of her. But maybe the asymmetry is designed to keep the physician in a position of unquestioned superiority, above the patient. I started to call my former VUMC physician “Rich”. And he switched, immediately, to “Professor Wooders”. It was almost funny.

With all confidence in VUMC gone – this was the most disturbing but not my first negative experience – I searched for a specialist on the internet and in September 2010 saw Dr. Erik Alexander, at Brigham and Women’s (B&W) in Boston. Erik advised me to have a thyroidectomy and also recommended a surgeon, Dr. Francis Moore, also of B&W. Dr. Moore interviewed me on November 10th, 2010, and I had a total thyroidectomy on November 11th. 2010

The Diagnosis: Thyroid Cancer

B&W Pathology reported a tall cell papillary thyroid cancer with extrathyroidal extension (minimal). Not good. Tall cell thyroid cancer has an estimated mortality rate about 16 times that of papillary cancer generally. At least one study proposes that tall cell thyroid cancer can become anaplastic cancer, which is extremely aggressive. “Extrathyrodial extension” means that the cancer has extended beyond the thyroid capsule. With extrathyroidal extension, for individuals over forty-five thyroid cancer becomes Stage III. Whether the extrathyroidal extension occurred during VUMC’s delay is unknown, but I believe it is likely; my VUMC physician was unable to detect the enlargement of my thyroid in September 2009, but detected it immediately in May 2010.  I complained to VUMC.

Post-Surgery Treatment

My treatment involved thyroid hormone withdrawal to raise my TSH (thyroid stimulating hormone) and a low-iodine diet lasting some weeks followed by ablation with radioactive iodine (RAI).  “Glowies” are not allowed to fly so I had the RAI at VUMC. The endocrinologist at VUMC referred me to his nurse for instructions for the procedure.  I was not following the VUMC standard procedure of injection of Thyrogen (a form of TSH) to raise TSH but instead hormone withdrawal. The instructions for my procedure were somewhat garbled. I sought and obtained clarification, but still it was anxiety-provoking.

In January 2011, three men in hospital garb brought my RAI pill into a small, cold room at VUMC where I had been waiting on a small, cold hard chair. Might they be like three co-authors, each of whom relies on the other two to catch any mistakes? Might something else have been garbled? But I was at VUMC to swallow the pill so I swallowed the pill.

A few days after swallowing the pill, standard procedure is to have a whole body scan to see where the RAI was soaked up. I lie in a cold machine in a cold room, while in the adjoining small room with a glass window and open door several hospital personal watched monitors, laughed and giggled. Was it funny? Most important, though, the RAI was soaked up where it was supposed to be – in the thyroid bed.

Surgery and Treatment Side Effects: Hyperthyoidism

After my surgery I had a sore throat. But the frequent sensation of clutching around my neck, the heaviness in my chest, my sometimes racing heart, and extreme fatigue seemed to only get worse. Last year, 2011, was a very bad year. I had MRIs, electrocardiograms, nuclear stress electrocardiograms, nuclear perfusion tests, CT scans with contrast, and blood tests for everything. But no explanations of my symptoms were offered. The symptoms intensified.

It now seems that I was suffering effects of hyperthyroidism.  To suppress the activity of any remaining thyroid cells, thyroid cancer patients are prescribed high levels of levothyroxine (thyroid hormone). Individuals react differently to hyperthyroidism. I had multiple symptoms – fatigue, anxiety, palpitations, and an atrial fibrillation. (At the time of my atrial fibrillation I was in Sydney. My wonderful daughter-in-law came to the hospital. I was so glad that she was there to keep watch.  By the way, there everyone – doctors, paramedics, nurses – called each other by their first names. I was “Mrs. Wooders”.)    It might have helped to know that my symptoms were those of hyperthyroidism, not of the return of cancer. See http://www.myrnacatharsis.com/what-it-is-like/ for more of the story.

All Clear

My first post-thyroidectomy exam was on August 20th, 2011 at B&W. There was no observable evidence of cancer. It was wonderful. The sun shone, the trees glistened, the streets of Boston were filled with happy, smiling people.

Last March we reduced my levothyroxine. And, as time passes, it becomes less and less likely that I will have any recurrence. Back in rural Alberta, I had learned to “never let them see you cry” so I tried to keep my thyroid cancer private. This spring I decided to go public; I let my colleagues in VU Economics know in an email and via my website: Myrna’s Catharsis. I found the Thyca website (Thyroid Cancer Survivors Association) and learned that my experience with extreme hyperthyroidism had been shared by others.  See: What it is Like.)

In the spring of 2012, my tests looked very fine. My treadmill squawked a bit with its first use this summer, but now runs smoothly! Except for emotional scarring, I feel back to normal. If I have to increase my levothyroxine again, I will recognize symptoms of hyperthyroidism. If I have a recurrence, I think that it will not be for some years; I am hoping for forty. It may be useful for other thyroid cancer patients to know the symptoms that may occur as a result of their treatment, for persons in positions of power over others to better understand that thyroid cancer survivors may be hyper (or hypo) thyroid. And for physicians to recognize that not all thyroid cancers are slow growing so a patient with an enlarged thyroid should not be ignored.

Some fantastic reference books that I found along my journey:

Kenneth Ain,  A specialist in thyroid cancer, author, with Sara Rosenthal, of The Complete Thyroid Handbook, which includes a discussion of various levels of care, including “standard community care” – what one might expect of their local GP.

Another excellent, more technical and specialized book is Thyroid Cancer: A Patient’s Guide By D. Van Nostrand, G. Bloom, L. Wartofsky

This article was posted previously on ThyroidChange and re-posted with permission.

From Myrna Wooders (www.myrnacatharsis.com)

My Thyroid Cancer Learning Experience

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Hi. My name is Melissa and I am a thyca survivor. My story begins one day when I was swimming in the pool at the gym and out of nowhere I noticed that I was starting to have a hard time breathing. It was different than hyperventilating because I was aware of how that felt; it was more like something was constricting my air. Mind you, at that point, I had been working out for years and had never had a problem of this nature. So when I started noticing it and it continued to get worse, I decided to make an appointment with my PCP who basically said it was allergies, gave me a prescription for allergies and sent me on my way. However, that didn’t help and I was worried that it was something else. Since I did not need a referral for my insurance, I made an appointment with an ENT that a friend of mine goes to. All this was in March of 2005. The ENT had X-rays of my sinuses done and ordered CAT scans. While reviewing the CAT scans of my sinuses, he was performing a standard a check and said “Did you know that you have a lump on your thyroid?”

That question led to a multitude of tests from thyroid ultrasound to Fine Needle Aspiration (FNA) sonogram guided biopsy and eventually to a partial thyroidectomy, removing the left side of my thyroid on Friday, August 12, 2005. The frozen nodule biopsy did not show signs of cancer. My family and I were so relieved and the ENT told my family, “No wonder she was having trouble breathing; there was a tumor almost the size of a tennis ball pressing against her wind pipe!”

Well, I was relieved but don’t remember much from the day of surgery because the anesthesia hit me hard, and I never woke up until 10:00 that night at which time I wanted food. The cafeteria was closed, but they were able to get me chicken broth and crackers. Yuck. My parathyroid glands were fine since I had an excellent surgeon, so the next day I was ready to go home for recovery.

By Monday, the doctor’s office tracked me down at my parents’ house where I had gone for recovery to get me in to see the doctor ASAP. I remember hanging up the phone and my dad asked me what was wrong – he hugged me and I cried.

So, by Wednesday that week, we drove back to Erie to meet with my ENT surgeon who proceeded to tell me that the tumor was a 4 cm follicular carcinoma mass which he said was encapsulated and proceeded to give me my options of leaving the remainder of the thyroid and having RAI (Radiation Ablation Iodine) or having it removed then having RAI. I chose to have it removed. By Friday, one week later, I was having a second surgery to remove the remainder of my thyroid. I kept joking with my family that the incision from the first surgery was like a zipper that they were going to just unzip and remove the rest. Again, I had to spend the night in the hospital and the next day I was at the nurse’s station begging to go home. Hospital stays are not my favorite thing. My calcium levels were good, my parathyroid glands were holding their own so I was permitted to go back to my parents’ home in Clarion for recovery and return to Erie in a week for suture removal and surgery follow up. From what I remember, since it’s been seven years, my ENT put me on Cytomel after my surgery.  I don’t remember the dose.

The follow-up appointment day was less tense than the week before since the major part, the surgeries, were already done. We received the results of the second pathology and it was a good decision to go ahead with the second surgery because the right side showed a focus of follicular variant papillary carcinoma.  The time frame before surgeries and RAI seemed like forever. I had my RAI in November of 2005. I went back to work after four weeks, which ended up being too stressful for me. As a result, I had to consult with my doctor and have that changed to part time for a couple weeks to let my body adjust to having no thyroid and coping in a stressful work environment. I suffered extreme fatigue and had a hard time focusing at work.

In the meantime, my ENT set me up with RAI and had me start Synthroid after RAI.

RAI was a challenge because of hormone withdrawal and having NO thyroid and trying to push myself everyday to still work full-time. This was tough, but I managed to function. They administered 168.8Mcis and sent me on my way home for isolation for a week. Not fun. I was fortunate that my only side effect at the time was fatigue and a horrible metallic taste that lasted for quite a while. A few months later, I ended up with salivary gland issues. Also not fun.

After my isolation was up, I went back to work full-time. I don’t know how I held up but I managed to function. Adrenaline kept me going most days; then I would go home and crash hard.

I did not have an endo in the picture until 2006. I do not remember the exact date. This began TSH suppression and years of what I refer to as “thyroid crap.” I did not tolerate TSH suppression well and had many side effects that I counteracted with various prescriptions. The first couple years were struggles and worries of whether or not the cancer was gone. After five scans and clean ultra-sounds, I remain cancer-free. Thank goodness!

However, the struggles were not just with TSH suppression. My first scan was administered with hormone withdrawal and it was horrible. I managed to keep working full-time up until I had to take the radioactive iodine pill for the scan. Then I took a few days off work because of the I-131 scan dose, not to mention the fact that I was extremely run down.  After that, I went back to work full-time and waited to hear from the doctor’s office about when I could go back on my Synthroid. One week went by; no call. So I began calling and was told the CRNP[1] was on vacation. The endo’s office was going through a move at that time also, so it was chaos for their office staff. I gave up and put myself back on my Synthroid. I had to function.

Somewhere in this craziness, I found a flyer at my endocrinologist’s office on thyca from the Thyroid Cancer Survivors’ Association. I joined their Yahoo support group to help me through the challenges I faced. I have since became a member of this association so that I can help others as they have helped me.

Seven years later, and five clean scans and many clean ultrasounds: I am ready to take control of my life again. I am very sensitive to Synthroid changes and TSH suppression.  Now I am hypothyroid for no apparent reason and have an endo who doesn’t seem to care about getting to the root of the cause. His answer is to keep increasing my Synthroid until the TSH goes back down and the Free T4 goes up. He says that I am converting enough Free T3 and refuses to put me on a T3 medication. Also, he does not even consider any other regimens such as NDT. Endocrinologists like this are the true reason that we need ThyroidChange.

I encourage everyone to get their necks checked frequently. If you have an annual physical, have your doctor check it then.

As I sit and write my story, I realize that I haven’t even touched on many of the issues that I would have liked to as it would probably end up being way too long.

What I would like for you to take from this story, is remember that you know your body. If something does not seem right, then get it checked out.

Don’t settle – it’s your body and your health. Be your own advocate!

Although my situation is still a work in progress, I now possess more knowledge to continue the fight against cancer and I am now against what I feel is inadequate thyroid treatment. Thank you to ThyCaThyroid Sexy, Half Pint, ThyroidChange, Stop the Thyroid Madness and all other individuals and groups that have helped me.

As I work to remedy my own struggles, I also thrive to help others through theirs.

Good luck in your journeys and best of health!


[1] Certified Registered Nurse Practitioner

This article was posted previously on ThyroidChange and re-posted with permission.