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Thyroid Patient Experiences vs Medical Research: do they jive or not?

Lightning2There was a long time in my life – more than 20 years in fact – that I suffered immensely, in spite of managing to live my life.  I paid hefty prices….and suffered constantly. You can read my story on STTM, and read even more details in the Introduction of the revised Stop the Thyroid Madness book.

Ultimately, science-based, mainstream medicine failed me…and others.

During those 20 years, and more so during the final ten years, I went from doctor to doctor. Thank the good Lord for insurance!! I visited premier medical centers and was subjected to numerous tests and medical procedures. One in particular resulted in a scar on my left bicep that I still carry today – an attempt to see if my extreme fatigue and weakness had an answer in a muscle biopsy.

But I got NO answers, and no relief. There was no pharmacological drug, nor any physical intervention, or a lab result analysis, or any medical diagnosis that changed my misery. I was left to deteriorate on my own. And that pushed me to apply for Social Security Disability. It was only through my own drive in discovering a better treatment I finally got well.

And turns out my experience, both the negative and positive, has similarities with millions of others, to their own degree and kind, as we discovered in patient groups all over the internet.

Reported patient experiences became the gold, NOT medical science

When I started the Natural Thyroid Hormones (NTH) group on Yahoo in 2002, oh did we learn!! (See STTM’s Talk to Others page). It was NOT science that helped us get better. It was learning from each other!! And all of that reported patient experience and wisdom birthed the STTM website, the STTM book, and many more groups. Because we were now getting WELL thanks to all those reported experiences. And others still are getting well–NOT because of “medical science”, but because we have been listening to each other’s experiences and wisdom!

Does “science” support the success we have achieved?  

At first, there was little science to support what we knew to be true by our combined and growing experiences in getting well. And we didn’t care. We were FINALLY getting well!

And as we’ve been getting well, we simply roll our eyes when we occasionally run into a “science snob” who looks down his or her intellectual stuffy nose with ignorant criticism like “It’s nothing more than “anecdotal BS”!!  i.e. you can’t POSSIBLY know what you are talking about if there’s no rigorous scientific analysis, debate, or documentation. 

**crickets chirping**

But it turns out there ARE medical scientific studies which support some of what we already know by our experiences. Many readers of Stop the Thyroid Madness may not have discovered this yet, but STTM has a page which lists medical studies which support what we already know. So take a peek.

On the other side of the coin, how science can be completely flawed

One 1993 scientific study titled “Levothyroxine Therapy in Patients with Thyroid Disease” is one of MANY studies that informed patients came to realize was faulty. The concluding paragraph stated:

With proper patient monitoring, levothyroxine replacement therapy should be effective, inexpensive, and free of complications. Recommendations for thyroid-stimulating hormone suppression with levothyroxine are based on riskbenefit considerations of the biologic characteristics of the thyroid disorder and the individual patient.

Effective? Free of complications? It didn’t take long for a growing body of thyroid patients, who were comparing notes with each other (besides looking back at the experiences of their relatives) to see that this was FAR from the truth for many of us, to our own degree and kind. I started compiling plenty of non-effective results plus complications of being on T4-only medications from the mouths of patients worldwide over the years.

And the longer we’ve been talking to each other, we also discovered that even when some T4-treated patients report good results on these meds at first…or for several years…they were coming into groups to honestly report seeing more and more symptoms of a poor treatment crop up the longer they stayed on their Synthroid or any other T4-only treatment.  It’s not a pretty picture overall.

(And by the way, natural desiccated thyroid is CHEAPER.)

Medical school training is just as much the problem as is flawed science

The Carnegie Foundation did a study about medical schools,  and in a particular paragraph, concluded (italics mine):

Medical training is inflexible, excessively long and not learner centered. They found that clinical education is overly focused on inpatient clinical experience, supervised by clinical faculty who have less and less time to teach and who have ceded much of their teaching responsibilities to residents, and situated in hospitals with marginal capacity to support their teaching mission. They observed poor connections between formal knowledge and experiential learning and inadequate attention to patient populations, systems of health care delivery, and effectiveness. Learners have inadequate opportunities to work with patients over time and to observe the course of illness and recovery; students and residents often poorly understand non-clinical physician roles. The team observed that medical education does not adequately make use of the learning sciences. Finally, time and again the researchers saw that the pace and commercial nature of health care impede the inculcation of fundamental values of the profession.

And sadly, patients will report problems with their doctors long after they attended medical school. Common descriptions include unteachable, clueless, rigid, narrow-minded, arrogant, and/or blind to the “clinical presentation” of their patients clear symptoms of continued hypothyroidism (for example, depression, anxiety, high cholesterol or other fatty acids, rising blood pressure, aches and pain, and so much more!) These same doctors will then bandaid these symptoms with anti-depressants, statins, pain meds, blood pressure meds and more.

But to be clear: patient reports don’t equal that they feel their doctors are purposely trying to do harm! Instead, thyroid patients clarify that even their most well-liked doctors just aren’t listening, or aren’t willing to learn from patient experiences, or feel threatened if a patient wants to guide part of his or her own care, or are condescending, as if a patient couldn’t possibly have a brain of their own about what they need. So patients leave…and search for a doctor much more willing to listen to patient experiences and wisdom.

Bottom line: some of reported patient experiences and science jive to some degree. For the rest, medical research studies need to catch up with the truth of our successful experiences, or continue to look stupid.

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8 replies

The irony of the Oprah debacle for thyroid patients

opraharmsupI’ve been sitting back silently, reading all the backlash that started with Newsweek’s Best Life or Risky Advice May 30th article, a critical analysis of Oprah’s multiple program topics of Wish Away Cancer! Get A Lunchtime Face-Lift! Eradicate Autism! Turn Back The Clock! Thin Your Thighs! Cure Menopause! Harness Positive Energy! Erase Wrinkles! Banish Obesity! Live Your Best Life Ever!

And granted, some of the criticism seems justified.

Even thyroid patients winced and squirmed when Oprah stated that a month long Hawaiian vacation and eating fresh foods with soy milk were a great way to treat her thyroid condition.  Uh huh.   Patients equally gagged at her support of Dr. Christiane Northrup who made the the nutty insensitive comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ‘swallowing’ words one is aching to say.”

But the ensuing array of blog posts and articles following in the footsteps of the Newsweek criticism of Oprah has presented quite an irony for thyroid patients whose lives have been changed thanks to natural desiccated thyroid. Adjectives and/or descriptions of Oprah in these blogs and articles have included:

* dangerous

* peddling alternative treatments that are ineffective

* failing to present scientific evidence

* failing to listen to bona fide, medical school trained,  medical professionals

* being too gullible about the so-called wisdom and knowledge of certain patients (ala Suzanne Somers)

* failing to give more attention to science-based, status quo, mainstream medicine

Any of the above sound familiar? Yup, it sure does.

How many times have thyroid patients been told that desiccated thyroid like Armour or Naturethroid was dangerous, or raising it by symptoms rather than the TSH was dangerous. Or it’s dangerous to use because you’ll get heart problems and osteroporosis. Yet thyroid patients on desiccated thyroid have their lives CHANGED, with stronger hearts and increased bone density.

How many patients have had their doctors tell them that desiccated was ineffective as an alternative out-dated product, yet these same patients started to LIVE again with relief from old symptoms from this ineffective “alternative” medication that grandma once used.

How many articles by medical professionals are there who claim that there’s no scientific evidence to prove that desiccated thyroid is effective, in spite of CLEAR observation and reports of a huge and growing body of thyroid patients and certain doctors around the world about relief from depression, lowered cholesterol, better blood pressure, weight maintenance, hair regrowth, better stamina, less sickness and a myriad of other improvements!

How many bona fide, medical school trained,  medical professionals told us ad nauseum that our symptoms were not thyroid related (when they were), that we are “normal” because the TSH lab test says so (when we were far from it), that desiccated thyroid is outdated, unreliable, ineffective, and a ten ton load of other ridiculous comments from bona fide, medical school trained,  medical professionals.

How many doctors have told patients that they should NOT listen to other patients on the internet or Stop the Thyroid Madness because patients can’t possibly have any wisdom or know what they are talking about. Yet, lo and behold, it’s been patients and what they have learned who have started a wide-reaching revolution for better thyroid treatment that works, and a growing body of doctors are listening!

And how many times has science-based, status quo, mainstream medicine completely ruined the lives of thyroid patients because many doctors are too lazy to dare question or think outside the pharmaceutical, medical school box.

Yup, Oprah has made some blunders, gaffes and misjudgments as outlined in the Newsweek article.  She has gushed too quickly when Northrup opens her mouth or Oz walks in with his surgical garb.  But isn’t it a bit ironic that some of the criticism by others towards Oprah are the same blunders, gaffes and misjudgments which most any thyroid patient has heard about their use of desiccated thyroid, and which has all been COMPLETELY wrong.

Bottom line, for every mistake and misjudgment Oprah has made–and CLEARLY she has done so in her understanding of thyroid treatment—she just might be opening the doors to medical truth, somewhere, somehow, between it all.

Janie

4 replies

Doctors who want to ban the availability of saliva testing

Oh jolly.

Diane, a thyroid and adrenal patient, informed me of a recent visit to a local Endocrinologist.  The doc stated that she was on a committee that is working with the FDA to do away with saliva testing, strongly proposing that it’s not accurate testing and is “harming” people.

Well, let’s see. For a couple of years now, thyroid patients who strongly suspect they have adrenal fatigue by the reactions they have to desiccated thyroid have been using saliva testing…and lo and behold,  the results they receive nearly completely conform with how they feel! i.e. saliva testing, which tests one’s cortisol levels at four key times during a 24 hour period,  has worked beautifully in helping thyroid patients with adrenal fatigue identify their problem, in helping these patients doctors have a better understanding of their problem, and knowing better what might be their best treatment, which can range from using licorice root, to over-the-counter adrenal support, to hydrocortisone (HC).

Harmful?? Give me a break.

Could it be that medical school trained doctors just hate and despise any method which a patient might benefit from WITHOUT going to the doctor and paying big bucks??  hmmmm.  And once again, could it be that a method NOT taught in medical school just MIGHT be a good one (just as desiccated thyroid like Armour, Naturethroid, etc. is far, far better than Synthroid or Levoxyl, which ARE taught in medical school)?

The FDA approved saliva testing for AIDS in 2005. They approved saliva testing for ovulation in 2003. They approved saliva testing to detect if a woman is going into premature labor in 1998. And there’s many more they have approved.  So…perhaps this is all a gasp of a committee who hates to see patients have some control over their health (terrible, awful thing, isn’t it?) or the cry of a committee that only reveals its ignorance.

p.s. Dr. Best of San Antonio recently posted the following excellent article on saliva testing: http://besthealthandwellnessinfo.com/hormone-testing-i-spit-on-your-blood-test/

Order your own saliva cortisol test here.

2 replies

Stop the Thyroid Madness 2008 NEW YEAR’S THYROID PATIENT RESOLUTIONS

For 2008, as a hypothyroid patient: I will:

1) expect that the relationship with my doctor will be a TEAM approach to my health care: not just his medical school/continuing education/experience, but also my own important knowledge and wisdom that I have gained (from reading sites like this), plus my subjective experience on my medication. My doctor does not live in my body or experience my symptoms; I do.

2) take the time to find a better doctor if my doctor refuses to respect the knowledge I have gained from reading sites like this, and/or will not listen to my subjective experience in my own body!

3) make my symptoms far more important than ink spots on a piece of paper called lab results, and will not passively allow a doctor to treat me ONLY according to those lab results.

4) give myself important supplements, including, but not limited to: selenium and zinc (helps conversion of T4 to T3), other minerals which may include magnesium, etc., plenty of B-vitamins (which are needed as I improve my thyroid function, besides supporting my adrenals), Vitamin C (also supports my adrenals) and more that I feel are suited for my needs.

5) be open to the fact that if Armour or other desiccated thyroid products don’t seem to be working, I am making one of several mistakes in my use of it, and will identify my mistakes and correct them.

Do you have others as a thyroid patient? Just respond to this post.

15 replies

Oprah…you can save yourself a lot of problems….

….if you will take the time to read here of what thousands of patients have found out about the medication you will PROBABLY be put on, and about the lab you will PROBABLY be dosed by.

For those who haven’t heard, Oprah announced on September 10th during her Good Morning America interview that she “blew her thyroid out”. Now that also sounds suspiciously like she also has adrenal fatigue, but time will tell.

And Oprah will now join the club of an estimated “billions” worldwide with thyroid disease. But even worse, she may also be joining the club of those who for nearly 50 years, have been put on the lousy T4-only medications (Synthroid, Levoxyl, Levothyroxine and others) and who have been terrorized with the TSH lab and it’s dubious and pathetic “normal” range.

Yes Oprah, beginning in the 1960’s, doctors starting putting ALL of us on T4-only meds, and in the early 1970’s, dosing by the TSH lab. And NEITHER have worked. Sure, some will state they felt better. But many will tell you that NOTHING changed. And ALL, to one degree or another, have been left with a variety of hypothyroid symptoms while doctors have been proclaiming that those VERY symptoms had nothing to do with hypothyroid since we were now “adequately” treated.

But we have NEVER been “adequately” treated, Oprah. Doctors became cattle in the chutes of their pharmaceutically-financed medical schools, blindly believing that T4-only meds were working and that the man-made TSH was the gold standard of diagnosis and dosing…and ignoring clinical presentations which showed the opposite.

And when we still complained of symptoms, we have been put on anti-depressants, statins, anti-anxiety meds, and a variety of other pills to bandaid our continuing hypo symptoms.

And we finally fought back Oprah. For the last 7+ years, patients like myself found out that there has always been a MUCH better treatment (desiccated thyroid), MUCH better labs (free T3 and free T4) and much better dosing strategy (by symptom elimination). Our lives have become far better because of what we have learned.

This website represents the knowledge of a large and constantly growing body of patients worldwide, and some wise doctors, which goes totally COUNTER to nearly 50 LOUSY years of pitiful thyroid treatment.

You, Oprah, are a megaphone of influence. And if you can take the time to read this website, you might play a huge role in helping to change MILLIONS of lives. Because right now, the vast majority of the medical community does NOT get this, and is continuing to keep patients SICK and TIRED and/or with continuing hypothyroid symptoms of some kind. And YOU are going to be one, with your own continuing list of symptoms, if you don’t consider what thyroid patients are trying to tell you by nearly 50 years of LIVING it.

5 replies