Levothyroxine

Thyroid Dysfunction With Medication or Vaccine Induced Demyelinating Diseases

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It is always amazing to me when seemingly disparate research articles come across my desk and within an instant there is a shift in understanding. That is what happened over the last two weeks, community members from different disease groups shared research articles. From the Gardasil community: CNS Demyelination and Quadrivalent HPV Vaccination .  From our friends at Thyroid Change: Triiodothyronine Administration Ameliorates the Demyelination/Remyelination Ratio in a Non-Human Primate Model of Multiple Sclerosis by Correcting Tissue Hypothyroidism. And I connected some dots.

Thyroid and Neuromuscular Reactions to Gardasil and Lupron

Among the more common side-effects reported by Gardasil injured and a group we are just beginning to study, Lupron injured women, include decreased thyroid function, sometimes associated with Hashimoto’s, thyrotoxicosis or even thyroid cancer. Simultaneously, but frequently viewed as separate or unrelated disease processes, both groups of women report a constellation of neurological and neuromuscular symptoms, many consistent with demyelinating disorders such as multiple sclerosis (MS). Indeed, case reports of central nervous system (CNS) demyelination or MS and Gardasil have been reported (cited above). There may be a connection between the demyelination process and the thyroid injury that develops as an adverse immune response to a drug or vaccine. More importantly, there may be a treatment opportunity.

Thyroid Hormones Affect Myelination

Almost a decade of research conducted solely in animals, rodents and monkeys, shows a connection between decreased thyroid function and demyelination disorders. Specifically, researchers found that administration of the thyroid hormone triiodothyronine (T3) not only improves the clinical course of the MS – like symptoms but effectively switches the disease process from a primarily demyelinating progression to remyelination. That is, the T3 induces cell level responses that regrow the protective myelin sheaths around CNS axons and corrects the medication-induced, tissue level, hypothyroidism. For the young women experiencing the host of neurological and neuromuscular symptoms post HPV vaccine, Gardasil or Cervarix, and/or post Lupron, this research may point to both an etiology and a treatment opportunity – disrupted thyroid metabolism mediated by an inflammatory reaction and T3 supplementation, respectively.

Dysregulated Thyroid in Critical and Chronic Illness

Vast amounts of research show a connection between thyroid function and critical and chronic illness. Hypothyroidism is common in what are otherwise considered ‘euthryoid’ or ‘normal’ thyroid individuals, but whose physiology is so severely stressed by disease or injury, thyroid function is affected. The presentation of diminished thyroid function during severe or chronic illness of unrelated etiology is often difficult to determine and its treatment is controversial. In these cases, thyroid stimulating hormone (TSH) is within the normal range in all but about 10% of patients and thyroxine (T4) may or may not be reduced. If and when further analysis is completed, T3, however, is often shown to be significantly diminished, the T4/T3 ratio is larger, reverse T3 (rT3), the T3 deactivating hormone is increased, while the enzymes responsible for converting T4 to T3 are reduced; clear evidence of disrupted thyroid metabolism that can be missed with traditional testing.

With the mixed laboratory presentation and evidence that supplementing with levothyroxine (synthetic T4) does little to improve patient outcomes, treating illness induced thyroid dysfunction is controversial, many physicians and medical organizations argue against treatment. Indeed, even in primary hypothyroidism, treatment with anything other than levothyroxine – T4 is controversial. Perhaps it shouldn’t be. The evidence reported in these animal studies, clearly indicates, T3 dysfunction and consequent supplementation controls the demyelination and remyelination process at the cell level and may improve clinical outcomes.  In this research, T3 supplementation also improved T4 levels without a concomitant onset of hyperthyroidism, the reason often cited for not utilizing T3.

What This Means

If you or your child are suffering with the constellation of symptoms associated with an inflammatory nerve disease such as multiple sclerosis and/or if you have known hypothyroid symptoms in combination with undiagnosed neuromuscular symptoms, it’s time to connect the dots. The two may be related and may require T3 supplementation. Whether these symptoms were initiated with an adverse reaction to a medication such as Lupron, a vaccine such as Gardasil or Cervarix, or by some other process entirely, the research presented here clearly suggests a role for T3 in the array of symptoms associated hypothyroid disease and CNS demyelinating diseases.

Some of the symptoms associated with MS include:

  • Vision problems (optic neuritis)
  • Numbness or tingling of the face, arms, legs
  • Chronic, unexplained pain
  • Muscle spasms – painful muscle contractions
  • Uncontrollable, often painful jerking of the arms or legs
  • Extreme fatigue and weakness
  • Dizziness
  • Vertigo (spinning)
  • Balance or gait (walking) problems
  • Hearing problems or loss
  • Seizures
  • Uncontrollable shaking
  • Breathing problems
  • Slurred speech
  • Trouble swallowing
  • Dysfunctional bladder urinating frequently, strong urges to urinate, or inability to hold in urine
  • Bowel problems – constipation, diarrhea, or loss of bowel control
  • Memory problems
  • Concentration problems
  • Language/speaking
  • Depression
  • Rapidly switching moods
  • Uncontrollable moods
  • Inappropriate moods

These symptoms have been noted in post Gardasil or Cervarix reactions, and as we are learning, in post Lupron reactions as well.  Even though these are two entirely different medications with entirely different mechanisms of action, the core reaction illness that ensues is inflammatory and often attacks the thyroid. When the thyroid is compromised, a range of other pathophysiological processes emerge, including demyelination. Certainly, additional research is warranted, but in the absence of time, and in the face of great suffering, T3 testing and supplementation may be indicated.

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This article was published previously on Hormones Matter in August 2013.

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)