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Read what this Eye Doctor Observed in His T4-only Treated Patients!

Matt Dixon ODThe following Guest Blog Post has been written Matt Dixon, OD who currently practices optometry in Perry, Georgia.

And not only did Dr. Dixon find himself with hypothyroidism, he made quite an interesting observation: 90% of his patients currently taking levothyroxine still have symptoms!

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So how did an optometrist (eye doctor) become passionate and obsessive about spreading the news about what Janie calls the “Madness”?

My personal journey

I don’t quite fit the typical patient profile for a hypothyroid patient.  I’m not female, no weight issues. I’ve always been very active. Yet when the symptoms started, I was clueless about where they came from or that they all could even be related. 

All eye docs are trained to recognize thyroid eye disease, but truthfully, we focus on end-stage symptoms of Grave’s disease and the ophthalmopathy that often comes with it.  And the typical optometrist does not encounter this very often.  I had no clue that in my own practice, hypothyroidism was one of the most common conditions I see. 

I suppose my first symptoms were body aches and pains.  I had always experienced annoying back issues and I presumed that deterioration was setting in as I became older (40’s).  I’ve also always been cold-natured. And by 2010, I noticed that I was struggling to make it through the work day. So by the end of the day, I was exhausted.  In fact, I was no longer exercising, but found myself buried on the couch as soon as I came home, not getting up until I forced myself to climb into bed.  Once I made it to bed, I couldn’t fall asleep and became addicted to Ambien.  When the alarm clock woke me up the next morning, my wife had to literally pull me out of bed.  If I ever forced myself to jog, I felt as if I was carrying a 25 lb. backpack.  I also began to struggle with unexplainable stress and anxiety.  

But what finally prompted me to seek answers was in fact eye-related.  I was driving my kids home one night and the road in front of me actually moved suddenly from left to right.  I hit the brakes and feared for our safety!  My 17 year old son took the wheel and we made it home.

The madness for me began

My physician at the time is a well-liked internist in my community.  I made an appointment for a checkup complete with blood work.  I had some issues that I was concerned about, but neither the assistant nor doctor reviewed my symptoms. 

I went back in a week and promptly received a prescription for Synthroid for hypothyroidism.  With little discussion about the disease, I headed to the pharmacy. After a couple of weeks I began to improve.  But I wanted to know more.  I found the vast list of hypothyroid symptoms online and could not believe how many I was experiencing.  I read enough to know that elimination of symptoms was the best way to dose the medication and focusing on TSH only would lead to under-treatment. 

More importantly, if my doctor did not know any of my symptoms, how could he know when I was adequately treated?  It was time for a new doctor.

Why do MD’s undertreat hypothyroidism?

My new doctor, unlike the previous one mentioned above, did review my symptoms and pledged to increase Synthroid until my TSH was reduced to around 1.  I made sure they were paying attention to how I was feeling.  Yes, I improved tremendously and found my happy place on brand name Synthroid.  But I did move over to natural desiccated thyroid (NDT) and was even happier. As I adjusted to the new medication and found the correct dosage, I was able to get through the day with full energy and better mental focus.  Most days I am symptom free.

In my area, I have yet to find more than a handful of docs who use NDT with any frequency.  In my patient population, I rarely encounter a patient on NDT unless I have coached them to find a way to get the prescription.  (Optometrists are licensed to prescribe oral medications but only for eye conditions) 

Synthroid is the number one prescribed drug in America!

This is no accident and it will not be easy to battle the industry that achieved this coveted ranking.  Doctors clearly have been trained to use synthetic T4-only meds as the treatment of choice, having been convinced that it is highly effective.  Trying to change this at the medical school level will likely never happen.  Attempts to enlighten physicians who are convinced that levothyroxine treatment and normalizing TSH levels is the best care will rarely lead to change.  In fact, general practitioners and internal medicine docs will continue to get it wrong as long as endocrinologists and the American Thyroid Association (ATA) promote Synthroid religiously.  Those who have seen the light, thanks to educators like Janie Bowthrope, will laugh (then cry) when they read the preview from the ATA’s published pocket guidelines http://eguideline.guidelinecentral.com/i/521958-ata-hypothyroidism-pocket-card How could these smart folks be so misinformed and allow patients to suffer?

What can one eye doctor do?

I’ve decided to review residual symptoms with every patient who comes into my office taking any form of hypothyroid medication.  The majority of them have never reviewed such a list!  Occasionally, a patient will not circle a “single symptom”, but more often patients will have “several” symptoms.  I offer a 3-page summary of how hypothyroidism can be properly treated and, of course, I have them google STTM.  After counseling over 100 of these patients (with only one complaint), many have returned to say thank you.  Sadly, most patients get the push back from their MD and will remain on T4-only meds.  I’ve also learned that if a physician has not studied the use of natural desiccated thyroid and is only committed to normalizing TSH, even the patients who convert to NDT may still suffer due to ineffective dosing.

I treat many patients with dry eye syndrome, which is very common and sometimes costly to treat.  I am convinced that treating dry eye syndrome in a patient who is undertreated for hypothyroidism is like trying to change a flat tire on a car that is still moving.  Every eye doctor should take an interest in this disease even if for this reason alone!

What can a patient do?

Refuse to tolerate inadequate treatments.  Be passionate about your own health.  Recognize that very good doctors with good intentions have been misinformed and may be facing tremendous pressure in our rapidly changing healthcare system.  They do not quickly change deeply held beliefs when it comes to recommended treatments.

Study Janie’s recommendations.  Make an effort to help your physician understand.   //www.stopthethyroidmadness.com/doctors-need-to-rethink/  When seeking a new doctor, nurse practitioner, physician’s assistant or osteopath, ask questions before you make an appointment.  And do not assume that a board-certified endocrinologist is any more enlightened about this disease.

Final thoughts

My best analogy in attempting to drive home the importance of optimal treatment of hypothyroidism in my patients is to show them their vision as it would appear through a half-strength pair of glasses.  I ask them if they would be happy to see like this.  I ask them how quickly they would find a new eye doctor who prescribes full-strength glasses.  They get it.  I’m passionate about this disease and the patients who are literally suffering and feel uninvited to shout “I feel like crap!” to a doctor who won’t listen.  Together, we will make a difference.

Matt Dixon, OD

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Dr. Dixon has practiced in Perry and Warner Robins, GA for over 25 years.  He provides comprehensive eye care and frequently counsels patients regarding wellness.  He has written numerous articles on eye disease and the business of optometry.

He is married to Jenna and has 3 children and 2 dogs.  He is an aspiring songwriter and has recorded 2 albums.  Thanks to NDT, he is quickly becoming a CrossFit addict.  www.drmattdixon.com

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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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The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their water. Considering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.

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How are YOU doing with the current desiccated thyroid shortages?

Pills Spilled Shortages

(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?

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British Thyroid Association still thinks a TSH up to 10 is borderline NORMAL????

A thyroid patient from the UK, and a member of Thyroid UK, reminded me of the ongoing travesty in the UK concerning the TSH lab test. And I thought it was worth revisiting due to its extreme absurdity. Quoting from www.brf-thyroid under FAQ, then Hypothyroidism, then Treatment:

The most sensitive indicator of developing hypothyroidism is a rise in the TSH result. Generally a TSH result of <5 is regarded as biochemically ‘normal’, a result of 5-10 is borderline and a result of >10 (in a patient who is not acutely ill) is regarded as consistent with hypothyroidism. The biochemical results have to be considered along side clinical symptoms, and together they determine the point at which the physician will introduce Thyroxine therapy.

Yikes. 5-10 is only BORDERLINE hypo?? What planet to they live on?? I have come across MANY thyroid patients on internet groups who have had a TSH below 3 with RAGING hypothyroidism, and for YEARS being told they were normal. Never, ever has the TSH been a “sensitive” indicator until it finally rises enough to reveal it….but that can be YEARS in the making, and the patient is now living with adrenal fatigue to further complicate their ongoing hypothyroid condition. The TSH lab test does NOT work.

Then from http://www.british-thyroid-association.org/Guidelines/, and downloading the 2006 final version of the UK guidelines for the Use of Thyroid Function Tests , and reading 3.2.2, comes this:

The decision on treatment of patients with subclinical hypothyroidism should be guided by repeated TSH measurements. When TSH is elevated but <10 mU/L there is no consistent evidence of an association with symptoms, secondary biochemical abnormalities (hyperlipidaemia), cardiac dysfunction or cardiac events.

No consistent evidence of an association with symptoms?? Then what ARE those symptoms that thyroid patients have experienced over and over and over, even with a TSH as low as the 2’s??? And repeated TSH measurements?? There is a huge body of thyroid patients across the world who have had years of a NORMAL TSH yet raging hypothyroid symptoms.

They also add:
There is evidence of improvement in the lipid profile and symptoms when patients with modestly raised TSH (mean 11.7mU/L) were rendered euthyroid with thyroxine

Calling anyone “euthyroid” (normal thyroid-wise) on a T4 med, with an average TSH of 11, is so laughable that it stands on its humorous own.

The Dark Ages persist in the diagnosis and treatment of hypothyroidism. What a shameful, blind-sighted travesty! Are you from the UK and dealing with the backwardness? Talk to us by replying to this blog (and be patient–comments don’t always show up quickly.).

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