TSH and T4-only Emphasis: Activists Called to Action to Write to Organizations by ThyroidChange.org

I don't know that I'll submit all of this information to the websites we are requested to write to, above, but this is what I would like to say if someone were going to have and want to take the time to read what I think might make the most impact.  

I certainly wish to direct your attention to the thread we have had on Lumigrate prior to this related to thyroid testing, "Lumigrate style"! The late, GRATE, Gary King worked on this topic and a related one with Dr Kennedy and Dr Spurlock, shortly before he was less and then unavailable due to cancer; he passed on 12/21/12. We are lucky to have picked his brain about this, as we did. www.lumigrate.com/forum/who-why-how-test-hormonesthyroid-etc-gary-king-rph

This is a draft at this time, I will come and review and edit. 

Hello, my name is Mardy Ross and I am a missed-diagnosed hypothyroid-olic, now in recovery for 8 years.

Yes, it seems the way to present it, the devastation that came to my life in the years between when I was born in 1960 in Colorado was FINALLY properly tested. You will read below that it was NOT either of MDs at the time that saw the goiter on my neck, despite my frequent visits and complaints of a lot of symptoms that would indicate hypothyroidism, including the diagnosis of many years prior of CFS and FMS! 

I am currently the founder and director of Lumigrate.com, a health education website which encourages people to approach wellness or illness recovery from a functional medicine and integrative medicine standpoint.

While Lumigrate offers a complement of information and providers who are experts in chronic illness, chronic fatigue, fibromyalgia and the disorders who typically include hypothyroidism, we are actually a prevention and wellness-focused "A to Z", "conception and before to death and after" health education website at this time (January 2013). When Lumigrate was in it's inital stages of planning and development, the initial concept was to focus upon the above chronic illnesses and we have shifted to meet the needs of the demands of our users/guests/customers in the four years since our launch on the Internet. 

I encourage proactivity in patients, and that includes being 'activists' related to writing to organizations, signing petitions, communicating with friends and adversaries in respectful ways. My background includes years as an occupational therapist, assistant to the health education team at a major university student health center, assistant to the air quality research team which essentially lead the way to the Clean Air Act Amendments of 1990 under the direction of "Dr. Visibility", William Malm, PhD (nuclear physics). But my biggest assignment I have been tasked with in life that has taken the longest to come full circle, was having hypothyroidism for who-knows-how-long because of the reliance of provider after provider testing only thyroid-stimulating hormone/TSH. 

In my work today, I  encourage people to educate providers who have 'made mistakes', not to 'indict' or 'punish' and 'confront', but to "give feedback" so the system can change to better meet the needs of the consumers. And so I preface my contribution with these words I have written as requested by ThyroidChange.org to underscore that I am simply speaking factually and for the purposes of contributing to as much change as can come from my words will share what I do here. Thank you for reading them.  

I hope you will take action to help the medical system do a better job of using our testing resources without wastefulness but with appreciating the hidden costs to EVERY person which is missed-diagnosed because of the inadequacies of relying upon TSH.

I do not currently work as a registered occupational therapist as my work is now more in an advisory and consulting / education capacity.  In order to keep my NBCOT registration intact, since I worked very hard to become an OT through medical issues that were so significant while in college it was suspected I had M.S. for a time, I attend continuing education offered to all allopathic medical providers in my community.

In 2012 that included a CME about hypothyroidsm testing and treatment. The presenter, an endocrinologist from the CU Med Center in Denver, Colorado, was asked by a primary care physician in the audience: "I don't know about the other doctors in the room, but for the last several years I have had a lot of patients coming to me that have been told that testing for only TSH isn't complete and misses the diagnosis of hypothyroidism oftentimes, and that free and reverse T3 and T4 are what is better."  (There are a couple of MDs who test in this manner in the area, one of which I had included in the information at Lumigrate.com at our launch in 2009 which also reached some people in our community through Facebook marketing.) 

Guess what the response was from the endocrinology "expert" presenting that day at this CME to train physicians on staying current on the trends in medical care?: I am paraphrasing a bit but this is fairly close to the exact response: "For your walking, talking patients, all you need is TSH, it's a waste of money to test all that other stuff, typically." 

I wanted to cry, and I am not one to cry easily ; I wanted to stand up and shout, and beat my head on the wall all at the same time, and I am not a person who is easily angered ! My reaction to that statement is because I see it daily in my work, hearing the consumers and providers alike who turn to me as a 'concierge' of my website, looking to continue their education with the type of information we provide. Lumigrate has experts about thyroid and other topics and three who have particular knowledge about thyroid testing and treatment immediately answered my call to action to build information on Lumigrate after I'd heard what was taught in early 2012 to the allopathic providers in my community. I went into health care because I sincerely care about people and their well-being and felt I had something to offer and it was what 'called to me' as a young adult still trying to find what 'fit' for me for a profession.  

I have witnessed patient after patient being missed diagnosed and misdiagnosed or only partly correctly diagnosed in many other fields, so this TSH 'thing' isn't unique, unfortunately. But it is a huge number of people, and worthy of a great deal of attention on my part and the overall experts I recruit to help educate at Lumigrate. 

To only test TSH misses SO MANY PEOPLE'S THYROID PROBLEMS, and has devastating effects on the people's lives until it is caught. If it is caught.

To provide my personal history of how bad this got for me, at about 20 years into my missed-diagnosis due to TSH reliance by countless providers in at least four cities I resided in, I offer this: When I was late 30s/early 40s, a family member insisted I stop working because they were afraid I looked like I was going to die of exhaustion, or fall asleep driving. I have to credit them with potentially saving my life, as I was exhausted. I was director of rehabilitative driving for a progressive driving company and covered three offices in three cities an hour apart on average.  

I fell asleep after dinner on a Saturday after making a meal as I did every other weekend for an elderly relative I shared elder-care responsibilities with since they refused to move to assisted living. A headshot photograph of me for professional purposes has been jokingly referred to since my return towards wellness since finally being tested and treated properly, as the 'they made her look so life-like' photograph.

The moon-face I had as a result of the missed hypothyroidism and dead appearance is funny now on one hand, on the other, I really hate to think of all the people currently in my old shoes as their providers are, as mine were then, only testing TSH. I have been told by a chiropractor who has a particular focus on thyroid and supplementation with iodine and diet, etc., the my goiter was visible in photographs. I don't doubt it, my massage therapist saw it and wasn't a provider particularly focusing on thyroid.  

And I had gone to at least five primary care providers in that time period, due to insurance changes that had to do with employers making changes or my making job changes, doctors moving away as reimbursements in Denver were very low due to a lot of HMOs that didn't reimburse well, going on maternity leave, etc.

The years and decades of repeated missed-diagnosis had a profound effect on every facet of my life: professionally, activities and hobbies, relationships. The fatigue and need to work and participate with family obligations was so 'heavy' that for an extended period of time I was simply willing myself somehow to put a foot in front of another. One time I was in a line at a store and saw bananas only about 15 feet away and I was too tired to walk over and grab some, and that would have been a good thing for me to have purchased.

For years my mantra was "If every day in the future was for sure going to be like today, I would not want to be alive tomorrow; but I don't believe in my heart of hearts that I have gotten to the bottom of this." And at the bottom of it was that all my providers had used TSH and so I had been missed. Over and Over and Over and Over. Again, for YEARS and DECADES, my whole early adulthood profoundly affected. I potentially would have children and grandchildren now had it not been for the reliance on TSH, I was too tired in my mid 20s to fight the battle to an intervention with my husband, who very much wanted to have children but I was not going to have children with to raise with a parent abusing, in my opinion, alcohol. 

Later, I found a wonderfully kind, educated and financially stable man who said 'you're the one' after months of dating, and settling down finally at age 39 with me when I was 34. A 30# weight gain after switching to more wheat and off of meat due to cadaver anatomy my first semester of OT school, as it made meat unappealing to me to eat, lead to the ending of what was on track to be 'the relationship that lasts forever'.  This had not been a relationship based on talk and no action, we had land purchased and the rough plans for a home drawn out, and I'd done internships to become an OT in a clinic that served the rural area of the future homesite. I know for a fact in that time period I was tested for TSH, with the thyroid problem going un-detected. 

I had to start over again at the age of 36, at the same time as beginning a new career which moved me to another city, at a difficult time to be in medicine (1996), and with an aging parent who was not able to take care of themselves or their home and property with assistance.  I had a year around age 39/40 after yet another move for career and having to re-establish myself now a three hour round trip away from the parent needing assistance, where every other weekend was 'my weekend' for taking care of my home, laundry shopping, etc., and there was not the energy to get in the car and drive somewhere to do something. It wasn't 'worth it', as with anyone, downtime is important too. There was very little 'joy' involved, and my work involved working with people who had medical problems that included surviving car crashes.  

And that's one thing, I can handle that, but it would have been a lot more pleasant, had my providers properly tested my thyroid with something other than TSH so I had some energy. I'd be working out in the cold of winter with clients related to driving skills -- setting up and taking down cones with each day I was at the range teaching. Anyone who has been cold from low thyroid might commiserate, hopefully all others reading this with sympathize. 

My life as an adult has been filled with health challenges that have been very difficult and expensive to stay on top of. This was proceeded by a childhood and adolescence that had a lot of symptoms that could have been strung together with something helpful diagnosed and treated. Again, the reason for my frankness is to encourage policy makers and providers who I trust are well-meaning to see how many people with unbelievably obvious symptoms are being missed! 

Fortunately, as I have said, my health turned around when I was 44 years old, almost 9 years ago now. I had started going to a massage therapist regularly and she saw a mass on my throat in the area of my thyroid. I had just been to my second quarterly visit with one of the physicians in town who tests with the more 'progressive' testing concepts, but for whatever reason, he did not initiate testing it. I know of someone else in town whose doctor was screening with TSH and the hair stylist suggested further pressure about thyroid as there appeared to be a clear thyroid problem based on symptoms. This is why I suggest to people I educate that they go to professionals related to all things having to do with their body in order to increase the likelhood of catching something that has been missed by the physicians and other medical providers. Because they use a more common-sense approach than providers who rely on TSH, in my opinion. Symptoms!

Imagine if symptoms were brought into the clinical reasoning of providers!  I know, time is limited, brains are drained, and increasingly 'we' shifted to reliance upon tests that have norms and the numbers do the talking.  Well, the numbers will likely have to continue driving treatment for a while and so I suggest that 'we' do better than relyingon TSH. 

Perhaps that one physician, years back,  was focusing on other symptoms and treatments.  Perhaps he simply didn't 'think to look at the obvious', my primary complaint was fatigue that now was also insomnia and pain. Perhaps he is, like everyone, overwhelmed and frequently not bringing their "A game".  This was the first of many significant mistakes that provider made, unfortunately. But overall they did more good than harm, I came out ahead in the end.

Perhaps it was because I reported that I'd had it tested by EVER new doctor I have gone to since as far back as the daily and life-hindering fatigue started in my 20s. And my world started changing with the supplementation of Armour thyroid.  

Therefore, I cannot comment on my life being impacted by only receiving T4 because I have never had just T4, I went from Armour to compounded biologically idential T3/T4, which is what I take today. 

I hope what I was able to share about the years and decades of my thyroid condition being missed due to the providers who were operating on, in my opinion, incorrect advise and education about testing by relying on TSH