05 June 2012 ~ 22 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!

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

  1. Anita Davidson 6 June 2012 at 5:06 am Permalink

    Good on you Michelle & Denise. This information has to come out & thyroid patients & Doctors need to wise up on the fact that there are better treatment choices out there for thyroid sufferers.
    I have suffered hypo thyroid for I believe in hindsight since I was in my mid 20’s – I am now in my mid 50’s. I was diagnosed with hypo thyroid when I was 40 & was on Oroxine from then to Jan’12. It was after a very informative Health Retreat I went to in Oct ’11 that my mind was opened to questioning my treatment & my ongoing never resolving hypo thyroid symptoms. My growing debilitation caused me to have to give up my full time work in Jan ’12.
    I have spent the last 6 months researching as much as I possibly could & piecing together a change in treatment for myself.
    After many closed doors from Doctors and at times questioning myself, I continued to get up & dust myself off and keep searching.
    I am incredibly pleased to say that I found a Doctor who specialises in Thyroid & Hormone problems with a broad view who uses an integrative treatment plan and gets results. I have been seeing him since Mar ’12 & I am amazed at how much better I am feeling with his very pro active treatment. I feel I am one of the lucky ones to have ploughed thru the maze & come up with results but I believe every thyroid sufferer deserves to be treated effectively & to live a life free of the many debilitating symptoms of Thyroid disease.

  2. Shan kelly 6 June 2012 at 8:59 am Permalink

    Thyroid Support Ireland TSI is also backing this petition.
    People in Ireland want to see natural thyroid and T3 more easily prescribed here as well as a much more collaborative and integrative approach adopted by the medical profession.

    • Kenneth 20 June 2012 at 3:34 pm Permalink

      symptoms for Diabetes rapid breathing/ trolube breathing depression is be link to it to boils is a sight to doctor say exhausting headaches, back pain, aching muscles, and stomach pain Excessive thirst and appetite Increased urination (sometimes as often as every hour) Unusual weight loss or gain Fatigue Nausea, perhaps vomiting Blurred vision In women, frequent vaginal infections In men and women, yeast infections Trouble getting or maintaining an erection Dry mouth •Lack of interest and concentration Slow-healing sores or cuts Itching skin, especially in the groin or vaginal numbness/tingling in the hands/feet Areas of darkened skin i have it 5 years now ,my sister 15 year old have it since she was 6 run in both of of my family my ma sisters and brothers have it and their kids and also their kids my da mother had it and die from it in 2005 98 years old and his brothers and sisters and their kids had it to we are over run with 1 ,2 Common symptoms for lows include the following: Trembling Clamminess Palpitations Anxiety Sweating Hunger Because the brain is deprived of glucose, a second set of symptoms follows: Difficulty in thinking Confusion Headache Seizures Coma Ultimately, death Gestational diabetes During pregnancy body releases a lot of harmone which may sometimes interfere with the body’s usual response to insulin, which develops insulin resistance like the type 2 diabetes. Gestational diabetes is fully treatable but requires careful medical supervision throughout the pregnancy. It may improve or disappear after delivery. About 20%–50% of affected women develop type 2 diabetes There are 2 tests for Gestational Diabetes. A one hour fasting glucose test and a 3 hour test. In both cases, you drink a special drink that is very high in glucose (sugar) on an empty stomach and they test to see how your body handles the sugar. If they said you had slightly high sugar, you probably did the one hour test. To double check, they are bringing you in for the 3 hour test. Make sure you have totally fasted no food or drink other than water for 8 hours before the test. Eating before the test will effect your sugar numbers after the test. After you drink the drink go for a walk move around, don’t just sit or lay down. Moving and exercise lowers blood sugar. If you do get diagnosed with Gestational Diabetes, it is a real concern. One thing to remember is, you will not have diabetes when you have the baby. Giving birth cures Gestational Diabetes. Doctors do not know what causes it during pregnancy and there is no real way to fix it if it happens. You should eat a whole food diet, stay away from processed foods, foods with additives (diet cokes, fast food ) and eat high protein. (try to get 100grams a day). Gestational Diabetes can cause the baby to grow large and cause complications toward the end of pregnancy. Symptoms to look for are Sudden extreme swelling of the feet, hands and face (not normal swelling sudden and extreme), pain under the ribs on the left side of your body. If that happens, call the doc right away. The doc will work with you, rest and diet to help manage the diabetes to get you as far along in the pregnancy as possible. You CAN carry full term with hard work. However, if your sugar numbers continue to rise and go out of control along with getting the symptoms above, they will have to induce labor or send you for a c-section around 36-38 weeks. If is fairly common and can be managed. Read up on it and talk with your doctor. How blood glucose is measured In home testing, blood glucose levels are usually measured in terms of how many millimoles of glucose there is in a litre of blood. A millimole is a measurement that is used to define the concentration of glucose in your blood. The measurement is expressed as millimoles per litre, or mmol/l, for short. Blood glucose levels vary from person to person and the amount of glucose in your blood will also change throughout the day. Therefore, there is no such thing as an ‘ideal’ blood glucose level. However, a normal blood glucose level is between 4.0-6.0 mmol/l before meals (preprandial), and less than 10.0 mmol/l two hours after meals

  3. Michelle Teresa 6 June 2012 at 9:53 am Permalink

    Anita, I am so happy for you! I am still on my journey to finding a good doctor-patient relationship. I am hoping this petition will help us to get over the hurdle of searching and allow us to focus on optimal health! Cheers!

    Shan, the support of patient groups, such as Thyroid Support Ireland, is appreciated beyond words! This is an international issue and we would be remiss without including the ENTIRE global thyroid community. Thyroid patients, in Ireland and beyond, deserve access to medication containing T-3 and relationships with doctors who understand the importance of that access!

    • Srikanthvije 20 June 2012 at 9:14 pm Permalink

      Hi Liz,Yes, you need a doctor that will treat you and get more in depth labs beediss the TSH. You are probably on a T4 thyroid replacement as well. They can be very good at normalizing the blood, but not getting into the cells and converting to T3. T3 is the active thyroid that will normalize you and your symptoms. Don’t wait to think that the doctor you are seeing is going to change the way he is treating you. Find another doctor! Dr. Holtorf’s office does have a few different options for out of town patients. Check out his website to find out more or call them directly. They don’t bill insurance directly, but can give you the paperwork to submit yourself. Hope this helps!

  4. Jess S 9 June 2012 at 9:23 am Permalink

    Thanks for posing these questions Sarah, and for your answers, Michelle and Denise. They’re really interesting, especially the reasons behind poor thyroid treatment and the influence of pharmaceutical companies. As someone struggling with getting proper treatment for hypothyroidism, I’m so pleased to see how well the petition is doing and hope more people in the medical world will now sit up and take notice!

    • Sarah Downing 9 June 2012 at 9:39 am Permalink

      Hey Jess,

      Thanks for commenting and for letting me know the link to your blog again so that I can check it out. I know you mentioned the Petition too and I wanted to let Michelle Teresa know the link so that she can feature your blog in the list she is currently creating along with a little profile of who you are.

      I thought the answers given by Michelle and Denise were both interesting and enlightening. I hope that the petition effects change, but we shall see.

      Take care and talk soon!

      Sarah

      • Michelle Teresa 9 June 2012 at 12:22 pm Permalink

        Thank you so much, Jess, for taking the time out to read the interview. I am amazed at the success of the petition and the amazing community that is emerging! Thank you for joining us. 2,400 signatures last time I looked!

  5. MaryF 12 June 2012 at 9:33 am Permalink

    Thank you for this fantastic petition and site. There are petitions springing up all over the place, I SIGN THEM ALL and PASS THEM ON. I have sent yours out by email:

    Here are also three items which need wide signatures and ciruclation:

    another thyroid petition: 1. http://epetitions.direct.gov.uk/petitions/19000

    and 2. a petition about whistleblowing, patients often lose their care when they complain about substandard treatment, lots with thyroid issues do, and medical staff lose their careers: http://epetitions.direct.gov.uk/petitions/5741

    and Number 3. The world thyroid register which needs circulation and signatures:

    http://www.worldthyroidregister.com/

    If everybody signs all of these, as well as yours, we will be able to keep the pressure up.

    Please keep me fully updated so i can put out reminders to people.

    Mary F

    • Sarah Downing 12 June 2012 at 9:49 am Permalink

      Dear Mary F,

      Glad you like the site – and the petition:-). Thank you for sharing the other petitions with us. I’m not surprised that two of them are UK-based as that seems to be one of the countries where care is most lacking. I’ll definitely check them out and I hope my readers will too:-). I think many people know about the World Thyroid Register, initiated by Dr Gordon Skinner, another UK doc who had sadly been subjected to unfair witch hunts, even though he has reportedly helped a lot of patients regain their health.

      Cheers to the future!

      Sarah

  6. Phil 12 June 2012 at 9:52 am Permalink

    As owner and administrator of the popular web site ThyroidBoards.com, I can attest to the volume of “home remedies” and self diagnoses that are going on when it comes to thyroid trouble. Endocrinologists just don’t seem to be getting the job done so frustrated patients are going elsewhere – anywhere to find relief.

    We have thousands of users that visit our forums and nearly all have thyroid trouble of some sort. The number of people who are suffering is incredible. People are going YEARS without being diagnosed or being misdiagnosed or being under or over medicated. Families are being broken up. Jobs are being lost. Serious thyroid trouble is very debilitating. Imagine trying to sit at a desk all day when your hands are shaking like a leaf and your heart is beating out of your chest and you are dizzy, or in the case of hypothyroidism, you are so exhausted it is almost painful to keep your eyes open and you feel like you have a hangover that never goes away even though you never took a drink. This is what we deal with every day.

    We need Endocrinologists to see that the symptoms many of us describe are REAL. We do not need Xanax for anxiety disorders. We do not need Paxil to fix our depression. We don’t need Klonopin for mood disorders. We need a proper diagnosis and a plan of action.

    We too hope this petition will shed some light on the subject and cause Endocrinologists to realize there is more to Endocrinology than diabetes and that they will re-educate themselves so they have the latest, most accurate information. We want to work with our Endocrinologists. The relationship should not be confrontational. Many of our users describe their experience as “I’m the doctor, you listen to me” and completely disregard the patients’ symptoms.

    To any Endocrinologists out there who may stumble on this, please listen to your patients as they describe their symptoms. Please don’t discredit our symptoms or insult our intelligence. We’re not making this stuff up. You may have a degree in Endocrinology but most of us have 10+ years experience dealing with the disease and they don’t teach that in school.

    • Sarah Downing 12 June 2012 at 10:15 am Permalink

      Hi Phil,

      Thank you for commenting. Boards and groups like yours are so important because there are SO MANY thyroid patients out there who are perplexed as to what to do to get well. It isn’t right that people should feel they have no other option but to self-treat and whilst I understand that there are those who don’t condone it, I’m fully aware of the situation in the UK and how many people are left to suffer. It’s really criminal and needs to change! I’d like to think that any medical professionals who come across this petition or site will LISTEN to what we have to say as patients. I couldn’t agree more when you state that despite the fact we’re not medical professionals, many of us have years of experience of dealing with this illness. I have to say that since I fell sick I have become more knowledgeable than ever about the human body, simply because I have had to be – Relying on your doctor alone is often not enough … and when you are overwhelmed and tired it doesn’t seem right that you should have to deal with this crap. It also doesn’t seem right that thyroid disease doesn’t get the coverage it deserves even though it’s such a common illness – just because the press doesn’t deem it “glamorous enough”. I hate to say it, but no freaking illness is glamorous – certainly not when you personally are suffering from it!

      I’ve heard more horror stories about thyroid suffering than I care to count (including some of my own). I remember when I was first diagnosed how tough it was to sit at my desk because I was simply too exhausted to sit for any prolonged amount of time and the fact that I ached all over (another common symptom) certainly didn’t help either! The opposite extreme of hyperthyroidism certainly isn’t pleasant too! It saddens me when I hear about people’s problems with friends and family because so few people understand what they are going through. Part of that problem is lack of awareness. If the public talked more about thyroid disease, then people might just take it more seriously. And I’m not talking about the nasty “fat jokes” some TV doctors seem to spout. It also seems that it is considered perfectly okay to make fun of thyroid disease, although I don’t see people making fun of other more prominent diseases like diabetes. Why is that, I wonder? “A hangover that never goes away” – very well said! I think that is precisely how it feels sometimes.

      It also saddens me when I hear about people being told they are crazy or depressed. If anyone ever dares to tell me that, I might have to show them just how crazy I am;-). That’s one comment I’ve luckily never been treated to, although I’ve heard plenty of other nasty (and untrue) ones.

      I too have experienced time and time again how many doctors seem to think they have the licence to talk down to you and patronise you. It is beyond me why they do that, particularly when today’s generation of patients is more educated than ever, simply because we have to be; otherwise many of us have no hopes of getting well! And yes, yes, yes – we need to treat by symptoms and not just by blood tests. I would have thought that was common sense, but that’s something that some (thankfully not all!) medical professionals seem to lack.

      May this Petition and all the others effect change over time. No doubt, it won’t happen overnight, but we have to keep chipping away and do our best to make sure that at some point it does!

      Cheers,

      Sarah

  7. Fernanda 20 June 2012 at 8:17 pm Permalink

    I have a sinus infection also.. Great I thuoght, what next right?So here I have just had my appointment with my endocrinologist, did a new blood test to now be told that my hormone levels are now very low, so he is doing another panel of blood work.. Strange I ask, you must have something in mind if I am having more tests, so he replies, with possible pituary gland tumor, which are common especially considering the symptoms in the hormones and many get undiagnosed.. I hope this may shed some light and insight to some of you that find it hard to get your diagnoses, so I am hoping that some of you read up on diagnosis for pituary gland tumor’s and see what you think in order to assist you in your own treatment plans.. They also suggest that many doctors don’t detect this as they mimic other symptoms and that many practitioners fail to see this due to lack of education etc.. Also keep in mind if many of you may have had an MRI sometimes it is hard to detect due to not knowing specifics on what to look for so don’t be afraid in asking for a 2nd opinion either.. The more we are all aware of our own bodies and help in reading what our bodies tell us including the signs, the better help we can get from our caregivers.My next post will be followup to my next round of results including my neurosurgeon appointment.

  8. Elisabeth 27 June 2012 at 6:27 pm Permalink

    Thank you for this! I am signing it and passing it on. I have been following thyroid blogs and patient advocacy sites since I was diagnosed 3 years ago. It was the internet that introduced me to T4-T3 combined therapy, and it made a huge difference for me!

    I currently have a support group on a private social networking service (sgrouples.com), where I talk about my frustrations with other thyroid patients. I think that endocrinologists need to realize that we need better treatment!

    • Sarah Downing 28 June 2012 at 12:12 am Permalink

      Hello Elisabeth,

      Thank you very much for your comment. Good for you for signing the petition! I know many of us can relate to it. Like you, I found the wealth of information on the Internet to be a real lifesaver when I first got diagnosed and so I felt that I wanted to do my bit to give back and share my own experiences. I’m very glad that combined T3/T4 therapy has helped you so much – are you taking NDT?

      I am glad for you that you have your support group. I think reaching out to others can be very therapeutic and it’s great to know that we’re not alone.

      Yes, endocrinologists need to understand that it is inacceptable to turn their backs on patients who are still sick despite “adequate treatment”. It’s a no brainer really because if they ignore this they are not doing their job properly and they really need to be doing it for the right reasons – i.e. because they care about the patient rather than other (sometimes financial) motivations.

      Cheers,

      Sarah

      PS: Feel free to share the link to your support group. Perhaps some of the readers here might be interested in checking it out.


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