05 June 2012 ~ 24 Comments

Interview with the Initiators of the Petition “Patients with Thyroid Dysfunction Demand Better Care”

In May 2012, thyroid patient Michelle Teresa was sick and tired of suffering and watching the suffering of others, so decided to do something about it by launching a thyroid petition in the hope that it would bring about change for thyroid patients and attract the attention of the medical community.  A little later, fellow thyroid patient Denise Rodriguez contacted her, offering to help with what she deemed a worthy initiative.  Since then, the petition has received countless signatures and is growing by the day.  The two ladies were kind enough to agree to an interview to tell us more about what the petition involves and how it originally came about.

As Denise puts it, “The petition is requesting that endocrinologists become sufficiently
trained and up-to-date on the diagnosis, assessment and treatment of various thyroid disorders.  The petition uses international patient experience to justify our request and hope our voice will effect change. As with any petition, it needs large numbers to gain the credibility it deserves. We also have a Facebook page and group.”

Please note that the petition is also available in other languages (I translated the German version and there is also a Swedish version). If I am not mistaken, Michelle and Denise are still looking for people to translate it into other languages to reach a broader global audience. If you read this and are interested in helping, let me know and I will put you in contact with them.

“We hope that the medical community listens to the patient experiences outlined in the petition.  This is not a petition against physicians or endocrinologists.  It is quite the opposite.  It is an appeal for collaboration.” (Denise Rodriguez)

Sarah: Please tell me a little about how you were diagnosed and what inspired you to launch this petition, as well as describe in a few words what this petition is about.

Michelle: I was 11-years-old when my pediatrician, board certified in Endocrinology, diagnosed me with Hashimoto’s thyroiditis (side note: my diagnosis helped to diagnose my father, at age 36, with the same disease).  I started Synthroid and was instructed that the disorder would become insignificant with this treatment.  Fast-forward to January of this year: I was four months postpartum with my third daughter and I crashed.  It is hard to verbalize, but I knew that, on paper, the symptoms emerged like postpartum depression. It was diagnosed as PPD.

I was not depressed.  I was, however, disconnected from my moods; it was surreal.  I came to the realization that I knew nothing about my “thyroid condition”, which was not consistent with my nature.  I began reading scholarly journals, many books from various perspectives, and read every article I could find on Hashimoto’s thyroiditis.  I became angry at myself when my idiosyncrasies turned into symptoms.  Mood issues that had plagued me over the years seemed like needless suffering.  I realize my thyroid was being mismanaged and I believe I knew why … the information was available to answer these questions.

There was a post on the Facebook online forum “Stop the Thyroid Madness”, tallying the endocrinologists fired by the members.  Stories emerged and painted a picture, showing to my surprise that people no longer trusted their endocrinologists.  It also emerged that, in the wake of that loss, patient spear-headed innovations were thriving, and these were based on physiological fact and enriched with patient experience.  Some may claim these patient methods lack the credibility of formal research.  However, the sample size of those who use these “patient methods” is immense and has its own credibility.  Also, the non-existence of research does not negate the veracity of these insights which appeal to the logical, educated mind.  I believe if endocrinologists heard the voice of these patients, then there would be change, so I attempted to harness our collective voice in this petition.  If we, endocrinologists and their patients, could collaborate, it could catapult the field of Endocrinology which would benefit us all.

I am the mother of three daughters who, as per my endocrinologist, have a 50 percent chance of inheriting Hashimoto’s.  I suffered so each could thrive and I don’t want them to suffer as I have.

Denise: I have displayed glaring hypothyroid symptoms since I was a teenager.  All women on my mother’s side have thyroid issues.  Yet, whenever I visited the doctor, complained of my symptoms, and mentioned my family history, all doctors responded that my TSH was within normal range and that my thyroid was fine.  Three years ago, my symptoms became quite debilitating.  I have seen 16 doctors in the last three years and I was finally able to find a doctor who was willing to run the right tests, listen to my symptoms, and diagnose me.  My TSH is technically “in range”, as well as my thyroid antibodies.  However, my FT3 is in the gutter and my RT3/FT3 ratio is very low.  These, combined with my symptoms, positive ANA antibodies (something autoimmune going on) and a family history of Hashimoto’s, led to my diagnosis that I most likely have Hashimoto’s, but it is not revealing itself in the blood-work at this point.  We are also “watching” two nodules at the present time.

I was inspired by Michelle’s initial version of the petition that she wrote and wanted to help to reach a larger audience.  After doing a lot of my own research over the last few years, I realized that I was not alone with my story.  Countless people are being misdiagnosed and inadequately treated with thyroid disease.  This was also a large part of the inspiration to become involved.

Sarah: How did the two of you come together?

Michelle: In the first two days of its existence, the petition received 200 signatures.  It also received some constructive feedback. Denise contacted me, after reading our petition on the STTM forum, and asked me what she could do to help. She believed in the petition and my words.  In my first moment of doubt, Denise brought hope.  She brought life to my words.  We have been working together since and are a great team.  I have only known her a month, but it feels like much longer.

Denise: I have only been collaborating with Michelle since the petition began one month ago.  Michelle wrote and posted the initial version of the petition on the Stop the Thyroid Madness FB group.  At that point, it had received nearly 200 signatures in just a few days!  I was inspired by her message, considering my own struggles and what I knew about the widespread problem of diagnosing and treating thyroid disorders.

I felt compelled to contact her and offer help with polishing the petition and spreading the word.  We have had a wonderful working relationship and we complement each others’ strengths quite nicely, I think.

Sarah: How many doctors did you see before you got the correct diagnosis and what was your worst experience with a doctor? 

Michelle: My first doctor diagnosed me.  My worst experience with an endocrinologist: 24 years of my endocrinologists telling me to take a pill each day and that I didn’t need to make any food or lifestyle restrictions.  Each would ask if I was constipated, while my complaints of dry skin or extreme moods were ignored and the treatment remained unchanged.  My doctors referred me to a psychiatrist instead of running a thyroid panel.  I have been under a doctor’s care to treat my Hashimoto’s for 24 years and have never had a thyroid ultrasound.  Two months ago, I had to sit and listen to my new endocrinologist warn of the possibility of thyroid cancer.  That was probably my worst moment and it was not an individual endocrinologist, but a lifetime of them.  My FIRST ultrasound is next week.

Denise: I have seen 16 doctors in the last three years when my symptoms got really intolerable.  I cannot even count the number of doctors I have seen since I was a teenager and was never diagnosed.

Every doctor I had seen was a difficult experience for me, since each doctor I went to could not diagnose me and sent me on my way.  However, there have been a few standout moments that qualify as horrible experiences:  1)  After complaining of my debilitating symptoms, an endocrinologist simply said, “Your TSH is fine, you just have PCOS. Go back to your gynecologist.”  He never ran any other test other than TSH.  2)  When I asked a general practitioner I saw if I could have thyroid antibodies tested, she said, “We don’t test those unless your TSH is abnormal and your TSH is fine.”  I have come to find out in my research that this practice is a mistake in diagnosing Hashimoto’s.  3)  While mentioning worsening depression and anxiety (among a laundry list of other symptoms), an endocrinologist said, “Well, everything looks normal, have you tried seeing a psychologist?”.  As I’ve come to find out, depression and anxiety are known symptoms of thyroid disease.  It wasn’t in my head, it was in my thyroid!

Sarah: What was your best experience with a doctor?

Michelle: I loved my previous endocrinologist.  He is an amazing, smart man who cared very much about me.  Sadly, however, he did not realize his knowledge of how to assess and treat my disease was outdated.  My symptoms were dismissed since my TSH returned “in range.”  He was a diabetes specialist, not a thyroid specialist.  He saw my weight gain as an indicator of future diabetes, not as a symptom of my thyroid function.  My endocrinologist was simply unaware, and that is inexcusable.  He is just one example of a pattern I saw emerge in my analysis of current information available.  This experience was the wellspring of the petition’s demands.

Denise: The best experience I have had was with my current doctor who diagnosed me.  He is an integrative doctor who actually spent 2.5 hours with me on my first visit.  Yes, 2.5 hours.  He listened to me and didn’t just rely on lab-work.   He also understands how inter-related thyroid issues are with other endocrine issues.

Sarah: In your opinion, why is worldwide thyroid treatment so sadly lacking? 

Michelle:  The answer to every question is complex and has many facets.  Reality is complex.  I believe there are a myriad of reasons that contribute to the deficiencies of worldwide thyroid treatment:

*The culture of research works against this disease for quite a few reasons.  Since research has to be funded and money is a limited resource, it is diverted towards diseases that are seen as more threatening to public health.

*The patient population is mostly female.  Research, historically, has been conducted by predominantly males.  Researchers tend to research what is significant to them personally.  Therefore, the female experience was not examined as frequently.  Add in the stereotype of women being over-emotional, the presentation of thyroid dysfunction at puberty, when pregnant and at menopause … the perfect storm for dismissing the phenomenon.  Why would we think to investigate why women behave like “hysterical” women.

*Quantitative (seeking universal truth) tends to be of greater value in the physical sciences.  However, I believe researchers need to conduct multi-method studies which incorporate qualitative research (the examination of patterns that emerge).  It’s not just about numbers, but rather it is the numbers in combination with the feedback of the sample that creates meaningful research.

*The symptoms that are presented in the male patient population tend to diminish the perception of stereotyped “masculinity” (such as sexual dysfunction, physical and emotional “weakness”).  As a result, these are not readily discussed.

*Research is interpreted by researchers, individuals.  The values of a researcher allow him or her to frame one study as “credible” and another as “not credible”.  This shapes the perception of a study’s validity.  Sometimes we need to re-evaluate the lens through which we are looking to make sure we have a clear vision.

*Pharmaceutical companies spend millions of dollars to inform doctors in a united and uniform fashion.  Patients do not have a PR representative.

*The medical system is highly political and fast-paced.  The human audience is as unaware of mass media’s influence on pop culture as physicians are to the impact of pharmaceutical companies’ use of those media to sway physicians’ perception of current treatment options.  The research that is most available to an endocrinologist is the studies that are provided to them by the representatives of pharmaceutical companies.

*We value technology and profit in our global community.  However, I believe the definition of “technology” in the value structure of modern (integrative) medicine is moving away from the products of big pharma alleviating symptoms towards helping us to diagnose and treat a symptom’s root cause.

I could go on and on.

Denise: This is a complex issue and I think there are multiple reasons:

1)      Thyroid and endocrine problems can be complicated and inter-related, making it difficult to tease out the symptoms and to diagnose specific problems.

2)      Thyroid hormone treatment at any time may be affected by many things: low/ high cortisol, low iron, vitamin and mineral deficiencies, insulin issues, malabsorption (leaky gut) issues, etc.  All of these things can cause resistance or complications to thyroid hormone treatment.

3)      Doctors are being trained to rely solely on the result of the TSH test as the marker for thyroid health.  Other lab tests, such as FT3, FT4, RT3, and thyroid antibodies, must be issued as well.  Also, lab results are merely a guide for diagnoses and treatment options.  They are not the “be all and end all”.  Doctors are failing to investigate symptoms and are trained to rely on black and white lab results.

4)      Big pharma’s influence to push T4-only medication and research to support T4-only medication, as opposed to other treatment options such as NDT and T3.

Sarah: What do you think prevents doctors today from making the right decisions?

Michelle: Being a flawed human existing in a social structure.  Please see above response!

Denise:

1)      Doctors often have busy practices where they feel forced to make a diagnosis within 15 to 20 minutes.  Thyroid/endocrine issues are complex and require time to investigate the symptoms.

2)      Doctors are working in a system that relies only on the numbers of the lab results.  Diagnostic methods are often too “black and white”.  There are a lot of gray areas that I think doctors are too afraid to treat.

3)      Big pharma’s influence on doctors to prescribe certain medications.

4)      Lack of research on current diagnostic methods (FT3, FT4, RT3, thyroid antibodies) and current treatments being utilized by thyroid patients, such as T3-only medication, T3 & T4 synthetic combination methods and Natural Desiccated Thyroid medications.

Sarah: To what extent do pharmaceutical companies influence thyroid treatment?

Michelle: This is a difficult question.  The pharmaceutical industry is a strong voice with a strong PR engine.  I believe doctors are busy people who listen to the loudest voice.  The patient experience is lacking the same ability to convey our message.  That’s why I believe in the voice of the petition.  If we are loud enough, I believe they will listen.  I would be remiss if I did not mention the pharmaceutical companies’ ability to make promoting their product lucrative.

Denise: Pharmaceutical companies drive most of the research out there today.  It’s important to understand how research is carried out and why:

Medical research is done by researchers in medical schools, pharmaceutical industry labs, private foundations, and perhaps government research labs.  The key players, however, are medical schools and pharmaceutical industry labs.   That said, money drives research.  Pharmaceutical labs receive funding from their own company and the National Institute of Health (NIH), Medical schools receive research funding from NIH and pharmaceutical companies.  It’s a system where the biggest influence is pharmaceutical companies and their agendas.  This is why we need to circulate the petition to gather more signatures.  We essentially need to lobby with the petition since NIH also gets its funding and motivation from the government (congressmen).

Sarah: What advice would you give to a patient who is experiencing some of the circumstances you describe in your petition?

Michelle: I would recommend they educate themselves and decide what is best for them as an individual.  However, what do we do for those who do not know they need that education (like me four months ago)?  What do we do for the patients who do not know they are being undertreated or mistreated?  What about those who are educated and have developed possible paths to their optimal health, yet can find no doctor to assist them?  This petition is also for them.

Denise: Do as much research as you can before your doctor appointment.  Read “Stop the Thyroid Madness” by Janie Alexander Bowthorpe and other thyroid books.  Take the list of the necessary labs with you to your appointment and ask to have them run.   Do not take “no” or “your labs are fine” for an answer when you know you are ill.  You are your own patient advocate.  Fire your doctor if he/she is not testing the labs you requested.  Find a doctor who will listen to you.  Usually, it tends to be the “integrative” doctors who have a clue.  Call your local pharmacy or compounding pharmacy and ask which doctors prescribe Natural Desiccated Thyroid – they are usually the ones who can think “outside of the box”.   Visit Mary Shomon’s Top Thyroid Doctors and carefully read the reviews.  This is where I found my current doc who finally diagnosed me.

Sarah: What do you hope to achieve by your petition and how do you intend to go about it? What is the best way to effect change?

Michelle: The best way to effect change is collaboration between the medical providers and their patients.  I am hoping this change can come about from the union of the international thyroid patient community and the birth of our global voice.  This global voice is being focused on the communities which comprise the field of Endocrinology.  Every relationship will encounter conflict.  You cannot change things by discussing the conflict with others.  Rather, you need to speak directly with the conflicting party.  I value the relationship between the field of Endocrinology and the thyroid patient; therefore, I am trying to generate a bridge between our perspective.  Maybe we can meet in the middle. Cheers to the future!

Denise: We hope that the medical community listens to the patient experiences outlined in the petition.  This is not a petition against physicians or endocrinologists.  It is quite the opposite.  It is an appeal for collaboration.  Patients are wanting to share their experiences and what they have learned with their physicians.  The initiative is simply an appeal to the medical community to listen to patient testimonies.  However, the medical community relies on evidence-based research.  This may be the next step of the petition … to lobby for further research into the effectiveness of T3 only, Natural Desiccated Thyroid medication and combination methods.  We will have to see where the petition takes us!

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