ME and Being the YOU!/Patient with a Missed and then Found Thyroid Problem - My Story

As a medical consumer AND provider I now have experience also related to insurance-based medicine AND private pay, as for a while I was without health insurance and then elected to put $ into things that insurance doesn't pay for instead of insurance for a short time.  I've been at this health 'thing' for a long time and it didn't take long when I had really good insurance coverage with a deductible to realize if you rotated years and did as much insurance-based medicine as you could one year then not for a year (or more), you'd maximize on the deductible piece, essentially.  So these are concepts that are new to many people and so I apologize in advance for the length of my response here.  

As a consultant helping people navigate with their occupation of health care, essentially being a 'concierge' to people looking for direction related to where to go for a good health care experience (information and provider suggesions, I offer, thought Lumigrate typically), I review information at the start about where someone is 'at'  now and what they've become aware of and worked on in the past with other providers.  

If people are lucky enough to  know they have a hormone issue in the first place (which includes vitamin D and thyroid), they might have been provided a pharmaceutical medication such as Synthroid and others, or if the doctor is more progressive, sometimes they're on Armour thyroid, but that's made from an animal and not biologically identical to a humans and so many are not in favor of Armour either.  

Thyroid is a CLASSIC example of how everything in medicine today has SO many approaches, it's mind boggling!  And that, I think, might be why so many people aren't aware they have a thyroid issue let alone having it addressed PROPERLY! I mean, 1 in 8 women have thyroid dysfunction last I heard/read and only 10% are treated!  That's staggering!

With the focuse today about obesity, people are focusing on diet, but not on the things that have to do with supporting the thyroid in the right way.  People are drinking tap water that's been laced with fluoride because there was a need to dispose of industrial byproduct of a type of fluoride (not the type found in rocks, naturally), at a time a little evidence maybe perhaps showed fluoride helped reduce cavities in teeth. Now it is proven those effects are minimal and the effect son the thyroid and nervous system are very bad, but so many people believe the old 'urban legend'.  

Well, there IS a focus at Lumigrate on treating the underlying reasons for things, not just the symptom.  If you're having difficulty with your weight or having any of the other symptoms of low thyroid, have it checked out, but do it PROPERLY after educating yourself at this forum. 

Typically, patients unfortunately haven't had very thorough labs done, nor do the providers really understand how to properly test and treat thyroid and other hormone problems. They also don't even have copies of their labs at home, they've left all that trove of information (and information is power) in the hands of the medical office and personnel.  

SADLY, like my case for many years and decades, TSH was the only thing done and it came back WNL (normal range) and no further testing was done to dig to the root of the problem. And my health went from bad to worse, from 'tired' to 'trainwreck'.  My weight went from great to good to not good and I'll never forget the day I saw a superbill at a medical appointment that had the box checked 'obese'.

 I looked at the box next to it, which was 'morbid obesity' and thought "I wonder if I'm going to end up THERE someday, because I just told the doctor 'this is NOT my metabolism, this is NOT the way I normally am!' and got the response 'Mardy, you know as well as I do that it is 'calories in, calories out'.  I kid you not!  These things, with my more recent solutions that I know exist if people only can have access to the information and provider expertise and services it takes, made me committed to creating change and I'm doing that through this website, created in 2009 (with a year's work prior, so from the beginning of 2008).  

Sometimes people who have not been along for the journey with me very long do not realize why I am so committed to helping them and all others who are in a precarious way; those who have digressed to be in a 'worse way' appreciate it, and they might not always agree or accept the treatment philosophy we present at Lumigrate, but they know the costs, they know the hardship and the devastation.

And while I naturally work to have information to get those people out of the drain, as I have come back up out of it in the past through the things presented here, it makes infinite sense to have everyone who knows the difficulties on the lookout for people they can intervene with where they are and hope to get them on board a new path so they don't end up with the mess that comes from not addressing things earlier rather than later.  

To my story related specifically to thyroid: I had, in my 20s, 30s, and 40s had one occurrence each decade where my weight just shot up in an unbelievable way, and each time I did something to change what I was eating and it dropped in an unbelievable way.  Even at age 50 one of my close friends who saw me a lot said 'I've never seen anything like it!'  For several years I was going to many different doctors due to changes of insurance and location, most of which were doing TSH and it was coming back WNL, one of which was the one I refer to above with the 'calories in/out' 'advise' (eye roll).  In the summer of 2007, my new massage therapist (I'd just moved to Grand Junction) saw the mass on my throat and leveraged me to go BACK to the doctor I'd just been to for my quarterly checkup and say 'what's up with this MASS on my throat my massage therapist saw, doc?' Ironically, he was the area's leading provider with knowledge about what to do about fibromyalgia, yet he didn't even test my thyroid when I became a new patient, nor when I came back for my second appointment after three months.  He/WE, missed the obvious!

As a medical consumer I need to be aware, I thought, and go to a provider when I had a concern, whether that be a problem or preventing one. I learned my lesson that CONSUMERS NEED TO BE EDUCATED AND EMPOWERED TO PUSH FOR WHAT THEY BELIEVE IS RIGHT IF THE PROVIDER IS NOT TAKING APPROPRIATE ACTION. He'd not observed a mass on my throat,  nor had he done a physical exam of any kind to palpate the thyroid; he seemed to have a very wandering mind and verbalized a lot of thoughts and information and you'd go away feeling like you were talking with a knowledgeable guy, but in retrospect I thought 'what an odd guy' -- his mind wasn't organized enough to do a proper intake appointment, basically.  So if your provider seems a little whackadoodle, realize that there's a lot of that today in the whole world, professional circles are not immune.  And move on and find someone else; today there are providers who work remotely over the telephone for those who simply do not have qualified providers you can see face to face/in person.

In the years past when I had worked here for 2 months filling a staffing shortage, I had been referred to him by a physician friend in the area, and he had, at the end of an appointment where to my knowledge my diagnosis was 'chronic fatigue syndrome', come over to do a fast hands-on and called all the staff in and said 'this is why you always do a hands on because she had said she didn't have pain, but feel these shoulder muscles!'...

I was underreporting 'pain', just because my idea of what 'pain is' was very different than what everyone else's idea is; I was raised to not complain in a way, and things that I did 'complain about' or 'bring up' were dismissed or not dealt with effectively just because of my parent's own problems and dysfunctions and that is the coping strategy I had developed.        

And fortunately this particular provider I'm referring to knew how to adeptly and thoroughly test thyroid, once you got him thinking in that groove -- we'd been so focused on supplements and sleep and pain that he'd not gotten 'down to the functional reasons' and tested something as fundamental as thyroid.  

This was a HUGE lesson to me in that nobody thinks as much about you and your health or knows as much about You as YOU do, nor should they! YOU should be the one rolling up your sleeves as much as you can, and learning.  This is YOUR health, YOUR life! Each person really has to become that YOU in the center of the health care model on Lumigrate.com which I developed a year or two after that appointment.  

(A rheumatologist mapped out for me what route people with fibromyalgia should go to get results with fibromyalgia and then I brought that up in a meeting with Dr Young (a psychologist specializing in pain remediation, who is on Lumigrate in video, podcasts and forums), and he drew up the model as he can draw and thinks in models, then I had two different graphics artists draw it up to get what you see here -- it's been a process, but it's really a GRATE model, so I encourage YOU to look at it and perhaps PRINT IT and fill it in with YOUR providers on it -- what are you missing? Who would you LIKE to have on team YOU!?  

Once my thyroid was finally diagnosed as low, and not Hashimoto's thyroiditis, the suggestion was to supplement with Armour thyroid as it has T3 and T4, and I agreed; it made sense to me to take something that had T3 and T4 in it.  I felt SO much better than I did before but in retrospect that is when I started feeling a lot of anxiety which was very different for me than my baseline.  However, I was literally prescribed about 20 things in that timeframe, I had breathing issues, cardiac issues, pain issues, sleep issues, "tissue issues" -- you name it, I had it!  I feel better since switching to a compounded thyroid but I also had a pharmacy within a big box pharmacy chain give me something that made me feel and act like I was on speed -- it turns out it was 50% high and 50% low in the T3 and T4, I don't recall which was which. I had it analyzed out of curiosity. 

That going to the big box for compounding happened one day in the fall of 2009 when I'd gotten my mail order prescriptions from the big pharmacy as the insurance companies route you to now to save money, and went to set up my medications for the week and there was no Armour, and I thought I'd ordered it for sure!  Long story short, they were out of Armour, as was everyone in the country, as there was a "manufacturing problem", allegedly, and so they'd not called me to let me know I needed to get a different prescription...

Fortunately, my prescribing provider at the time was available and suggested/provided a Rx for a compounded T3/T4 and I was back in business.  Everything was fine that first month/batch and then I refilled and it happened to be a really stressful week and thought my feeling hyped up was from stress and busyness, but a friend said 'nope, something's wrong' and I realized it correlated with two days before when I'd started on the new vial of T3/T4.  That is why I now encourage people to really look at the QUALITY ASSURANCE that a compounding pharmacy does and if the pharmacist and facility are supported in the proper way to be doing what they are doing.  

That is why I have gone out of my way to get ITC Pharmacy, which is so large and can batch test compounded thryoid (or anything) to be sure what's in the pill or potion/lotion is actually what is supposed to be in it, same as the big pharmaceutical manufacturers do. On the podcasts with ITC, I asked Gary and Allan to discuss their quality assurance standards as they are really stringent.  That does not mean a pharmacy and laboratory has to be the size of ITC, but there are advantages to their making things in larger batches which are discussed in the podcast and worth a listen to.  

Since I don't currently have insurance benefits for blood work, I opted to do the ZRT testing via ITC (and our local VERY GOOD pharmacist Karen Floyd also uses ZRT, which is a good indicator of quality) as it is extremely reasonable in price and relatively convenient as you do it at home.  I might recommend that people really study the information about 'how to' and have assistance if needed, as it is really kind of cumbersome and I had to allot an extra hour or so in my day for spitting and blood dropletting and had to shuffle people and appointments to accommodate the time frames for testing and eating and remembering to refuse chewing gum when offered out at lunch, because it's  valid testing when done right but that means the operator/person is a variable .  (That operator in my case was me.  In other words the person needs to be fairly capable or have some help.) 

Becca's rate for initial consult and follow along for a year is really reasonable.  I felt Dr Spurlock's rates were as well and look forward to having benefits in the future to cover the types of things he's skilled at teasing out of lab work once I get done with the expenses of things insurance won't pay for and can get back to putting my health care dollars into insurance.  

I regret that I don't have the means to have BOTH insurance and be able to pay out of pocket and felt that for me it was the best route to take related to getting where I wanted/ needed to go with my health care, and again offer the story as ideas and what I did, not that I am recommending necessarily that anyone else does things the way I have; everyone has their own reality and will make their own health care decisions.   The times today are challenging for most people and this has opened up opportunities for many new routes, including for me to be able to educate people looking for this type of information on the Internet, so again, I hope this very LONG piece about thyroid as I have experienced it, is of benefit for people's ideas.   

I say this to underscore the concept that you don't have to just have ONE provider, they no longer have to be in your community, the technology and shipping of the United States (and beyond) have opened up new avenues! I actually look for overlap with provider's way of addressing things and then am not concerned when there is a difference of opinion because not everyone has the same outlook on things and this allows thepatient/consumer to figure out for themselves which route to take, and thereby furthering their empowerment and responsibility!  

It's simply the paradigm I do best in, and want others to have success with IF they wish to hop onto having this 'reformed health care  paradigm'.  And naturally, at Lumigrate, we're wanting YOU to feel empowered by having quality information with options to follow based on what makes sense or 'resonates' for you.  

Thanks for reading IF you were inclined to read my history and perspective from the consumer/patient experience I offer ... but naturally if someone wanted to skip that and just read the experts, that is  too!  ~~ Mardy