Some Rights Reserved
This work is licensed under a
Creative Commons
Attribution-Noncommercial-No Derivative Works 3.0
United States License.
Going For The Throat: Awareness, Or How My View Of The World Reads Like A NATO Press Conference
(Written by Robyn Davis Hahn, EIC/Health Care ‘Going For The Throat’, Dear Thyroid)
NATO headquarters, Brussels, 2002:, “…there are known “knowns.” There are things we know that we know. There are known unknowns. That is to say there are things that we now know we don’t know. But there are also unknown unknowns. There are things we do not know we don’t know. So when…we pull all this information together, we see only the known knowns and the known unknowns. And each year, we discover a few more of those unknown unknowns.
It sounds like a riddle. It isn’t a riddle. It is a very serious, important matter…
If you read this blog, then you are painfully AWARE of your thyroid, what it is, and thyroid disease. But what about the rest of the world?, AWARENESS is literally a concept that keeps me up at night, regarding any number of a revolving door of subjects.
I am aware of what I know. To a point, I am even aware of some things that I don’t know. But what scares the hell out of me most?, I don’t know what I don’t know.
Disease awareness is a wonderful thing. Thyroid disease certainly does not hold any records for being the only difficult to understand, diagnose, or manage disease on the block. How does disease awareness start? What keeps it going? Is it a high profile patient?, Is it the philanthropy of a wealthy benefactor? Is it an aggressive education campaign?
That’s a lot of questions, and I have no good answers. I can only comment on my personal thyroid awareness, and how it came to be, and my fears that we have only scratched the surface regarding our health and how to safeguard it–in other words we still don’t know what (or how much) we don’t know.
I consider myself lucky for one reason only–I am much like the princess and the pea. (Those who know me may be reading this and laughing–Robyn and princess in the same sentence–NEVER–more like Queen or Diva!), I have always had a low sensory threshold. I can feel ONE cat hair inside my bra, ONE grain of sand in my sock, ONE wrinkle in my breeches under my riding boots. It’s annoying, but it also made me aware of my thyroid. While it turns out that I have all the classic symptoms (you know, the ones that are easily explained away by being 40, busy, stressed, etc.), it was my ever-so-slightly full thyroid gland, still technically normal in size, that led to my seeing doctors, talking to people, educating myself, and ultimately being diagnosed.
You see, the lump in my neck that isn’t even there got me a diagnosis–not the extra pounds, the exhaustion, the irritability, the achy hips, knees, and hands, the dry skin, or the average body temperature of 96 degrees. I didn’t know what I didn’t know.
Personally, I think the key is research. Not just on thyroid issues–I mean research about all the things we don’t know, so that there are fewer things out there we don’t know about, or at the very least, we’ll have some idea about which things we know we don’t know enough about. We need research on environmental damage, “helpful†chemicals and drugs with yet undiscovered long term or residual side effects, “advances†in food science, increased reliance on technology…the list includes everything from the Tupperware in your closet, to the rust proofing on your car, to the fertilizer on your neighbor’s lawn, and to the computer in my lap.
Because what I do know is that it’s all related to our health, we just don’t know it yet.
Tags: autoimmune disease community, autoimmune disease support, autoimmune diseases awareness month March, autoimmune literary community, awareness for autoimmune diseases, Going for the Throat, Hashimoto's autoimmune disease, thyroid patients writing about awareness, what awareness means to Robyn Davis Hahn
Follow Dear Thyroid on Twitter/@DearThyroid | See our Facebook Page | Become a Fan on Facebook | Join our Facebook Group
You Can Create a Dear Thyroid Profile and share with friends!
Reader Feedback
27 Responses to “Going For The Throat: Awareness, Or How My View Of The World Reads Like A NATO Press Conference”
Leave a Reply to Bee
Comments are moderated in an effort to control spam. If you have a previously approved Comment, this one should go right through. Thanks for your patience!
Bravo Robyn! BRAVO!!! *golf clap* *golf clap*!!!!
Education and research are key! Knowing what is happening is the first step. Love this letter.
One instance of this is that my Dr. prescribed me liquid Magnesium in a rather large quantity. After I filled the Rx I did research on what Magnesium did in the body. I learned that it is good for muscles in your body. I was so tense and working out was no fun! Now – I can stay on the treadmill for almost an hour with no pain. I also learned a LOT of people with thyroid disorders take Magnesium. Some in much larger quantities than mine!
Thanks again Robin for a good “Going for the Throat”.
Excellent letter!
“While it turns out that I have all the classic symptoms (you know, the ones that are easily explained away by being 40, busy, stressed, etc.)” Your statement is SO true! I think so many people out there suffer (unnecessarily!) for a long time by explaining away symptoms instead of seeking out treatment… I know I did!
And to hypogirl, I will definitely ask about Magnesium at my appointment next week. I absolutely love my kickboxing classes but have considered dropping them because my body hurts so bad during and after class. Thanks for the info!
Love love love this I have allways craved knowledge any knowledge really. I feel like there is a power to learning something,anything.Sometimes I feel as though Doctors are put off by patients knowledge. When I walk into an office and start talking about a study I read I get mixed reactions from discusted rolling of the eyes to a smile that says I wish all patients took this initiative. A good Dr should be happy to have a well read patient. For now I am continuing my quest for knowledge both concerning the health of my family and myself and other knowledge. Knowledge truly is power.Keep em coming.
So true, so true. Knowledge is power but sometimes it seems that we need to have PhDs in order to know what might work or not, and we are our own experiments since we are all so different – yet we are all the same.
Robyn, since you already did the research on Magnesium, I trust it is accurate and will absolutely try it to see if it helps alleviate some of symptoms I experience.
Thanks!
☮ ♥
HypoG, Thanks for sharing the magnesium story. I’m going to do some research about it. I’m thrilled to hear that it’s helping.
I absolutely adore this week’s column. Robyn makes awareness so universal, which is so important, I think. The concept of being aware of what we know and don’t know in general, and how that lack of awareness affects our lives makes so much sense.
My favorite sentence was “Because what I do know is that it’s all related to our health, we just don’t know it yet.”
xo
Trish – I love what you reiterated regarding symptoms that are so easily explained away due to being in a certain age group. Thyroid disorders are so elusive, it seems.
I’m with you re: Magnesium.
Trish/Hypogirl, do you get weird muscle pull-ish feelings just by turning around in odd places in your body?
xo
Erica; I love what you wrote and I completely agree; knowledge is power. Bad doctors don’t want to hear our research findings. Good doctors do. I applaud you for not allowing negative feedback from doctors to dissuade you in your quest for continuing education/research.
Bravo, thysistah!
xo
Monica – Agreed, some of the information out there is difficult to decipher because it’s in what I call ‘mediguage.
One of the things I’ve learned, is pairing down my research and making notes along the way about sentences, words and paragraphs I don’t understand, so I can search for them online.
Good luck with the magnesium. Please keep us posted and let us know if it helps.
xo
Wonderful letter, Robyn…and so true. Aren’t you amazed with the knowledge we have that our parents didn’t? Chemicals, plastics, foods, herbs, and medicines….they all have an effect on our bodies. Knowledge is power…
In the quest to ‘help’ my poor, slow thyroid…I constantly seek knowledge.
Thank you!!!
Dear thyroid yes I do! I do get wierd pulling feelings. Stretching for me was a huge chore. I hated it cuz it hurt so bad. Now it’s a little bit better. I feel more flexible now. I hope this is making sense. My whole body was tense – with the Magnesium it’s a little more relaxed.
You Know, I don’t know if I said it already
…. “Great Wonderful Letter!!” Robyn!
I think some doctors feel intimidated by patients that are informed about their disease. Or maybe they feel they looses some power over the patient if they have to do “teamwork” and “cooperate” with them. Takes, maybe, away a little of the “Adonises in the white smock” from them.
HDinOregon
Cyndi – You’re absolutely right, and with the internet, it’s even better because we have a wealth of knowledge at our fingertips!
xo
Hypogirl, YES, YES, YES that’s it! OMG, I’m screaming from joy. I need magnesium. I thought it was a weight issue; clearly it’s not.
Thank you a million times over.
xo
HD – Don’t you think doctors unwilling to listen to our findings are bad doctors? Whereas a good doctor is willing to listen and actually appreciates an informed patient.
What do you think?
xo
DearThyroid,
I absolutely agree that Drs who don’t listen are bad docs. But I also feel that some doctors resent an educated patient. They either brush quickly over the patients info, and go on with “their agenda”, or they say outright that they will not get into “this” (whatever subject is being discussed) . I had a doctor like that (- note the past tense!).
Unfortunately, if you live in a small town, the choice of specialists is very limited or non-existing, and even the next larger city (an hour away one way by car) only has limited choice in endocrinologists; so – shopping for a good doctor can be very cumbersome and tricky. Often their office is saturated and they don’t take on new patients.
My new and current endo, when I told him that I like to keep myself as best informed as possible, said “that is good, that is a great way to start a dialog and discussion”. I really like this attitude.
HD
Well, hello ladies and gents!
I am finally behind the keyboard after a glorious morning riding my horse–the sun is shining, the temperature is a perfect 65 degrees–I love NC!
OK, back to work. I appreciate every comment. EVERY ONE! Writing this post felt a bit like channeling Dr. Seuss–“I would not, could not, know what I know. I could not, would not NOT know what I know…”
Hypogirl, thanks for the kudos and the information on magnesium. I recently started taking Selenium and feel FUCKING FABULOUS. Coincides with a modest Levo increase, so I’m not sure which it is, but selenium is cheap! Does magnesium cause diarrhea in high quantities? I’m thinking that it would mobilize quite a bit of water to the GI…must check this out.
Trish, OF COURSE we explain away some of the symptoms. It makes more sense to me to consider that I might be tired, cranky, frazzled, and gain weight because I AM 40 with a job, a young child, etc. etc. I never considered that I could be SICK!??!! And honestly, I’m not sure I really talked about those symptoms much because I considered them “normal” myself, so I can’t really fault my docs for not knowing.
Erica, I totally agree, with a caveat. Certainly knowledge scares some people, especially docs, and we have to work to present our information in a neutral, not “I know this and you don’t” manner (not saying that you do, I mean in general). BUT, I am mostly talking about global, big picture knowledge. For instance, flame retardants on fabric materials have made furniture safer. OK. But now 10-15 years later we are seeing 10s-fold increases in thyroid disease in cats–and a link has recently been found, the cats being exposed by sleeping on these materials and then grooming themselves. Teflon coated pans make life so much easier–no sticking food–but heat a teflon pan in a house with a pet bird = dead pet bird. To me, these “canaries in the coal mine” are telling me that for every “advance” or “problem we fix”, we are creating new problems that we may not be aware of for dozens of years!
Monica, you got it girl. I don’t think anyone will live long enough, or have a big enough brain to know it all (except for maybe my mother 😉 ). And for the record, the magnesium thing was HypoGirl, I claim no knowledge of that one (yet!).
Cyndi–exactly! RIght on, sistah!
HD, I’m not being down on docs (today!). Most of the knowledge I speak of NO ONE knows right now–and I don’t expect the “average” doc of “above average” intelligence to be able to know a lot about ALL the disease interactions, studies, etc. I do TONS of continuing education and read read read, and new stuff sneaks up on me all the time. (Trouble is, sometimes the info is not so new, I just was not aware of it!).
Katie, thanks for chiming in. Your counter points are always on the mark! (And I also really liked my last line–ties it all together, eh?!)
HD (we were posting at the same time, I think)–I DO agree that any doctor that consistently refuses to listen is a bad doctor. I would rather have a “less smart” doc who will listen, work with me, and research what (s)he doesn’t know, than one who is “briliant” and not collaborative and open minded.
Robyn and Dear Thyroid,
Yes Magnesium will cause diarrhea in high quantities so be careful! Wouldn’t want any accidents now would we?
🙂
Robyn is Selenium the same type of thing? I will need to research this as well.
I challenge you to write a book using 50 words or less
;-).
Oops, that’s “brilLiant”! I guess I don’t qualify 😉
HypoGirl, Dr. Seuss is fantastic isn’t he? It’s totally “okay” for me to read his books a lot right now since I have a toddler. Uh, sure, that’s why I read them….
It is my understanding that selenium is integral in converting T4 to T3. I do not know the effect on muscles.
Robyn,
I DO agree that any doctor that consistently refuses to listen is a bad doctor. I would rather have a “less smart†doc who will listen, work with me, and research what (s)he doesn’t know, than one who is “brilliant†and not collaborative and open minded.
I absolutely agree!! If a doctor were to say to me, sorry I don’t know that part, but I will look into it, – I’d be much more at ease – than a doctor who thinks everything he is saying is gospel and no dissenting opinions are allowed.
HD
Great post Robyn and even better replies.
Lolly
I could really relate to this letter. The knowing and not knowing…. that is me alright.
I take a calcium-magnesium supplement. My massage therapist actually recommended it because of how tense and rock hard my shoulder muscles get. Its made a big difference for me and can really tell when I am not using it.
I always got “stopped up” by taking just calcium alone…the combo of calcium and magnesium together keep the body in balance so you don’t get the runs from the mag or the nones from the calcium.
Robyn,
I love, love, love your writing style! You musn’t be in that hypo-brain-fog place today, because you are rhyming it off like a pro!
People make fun of me because I am constantly doing research! I’ve always known I would be a life-long student in some capacity. I research everything because I know there is so much that I don’t know I don’t know!! If it wasn’t for my incessant research, I never would have discovered some of the causes for my health issues (which get dismissed/misunderstood by so many docs), and had I continued down the road I was on a year ago, I would surely be in a padded room somewhere with no internet access to do my beloved research! LOL
I am afraid it might be me that hypogirl referred to as taking very hig doses of magnesium. 🙂 Through my research on Mary Shommon’s website I discovered an amazing doctor (only 1 hour away) who is working on finding and treating the causes of my issues instead of drugging me for the symptoms! Turns out that on top of the Candida Overgrowth, hypothyroid, insulin resistance and numerous food allergies that we’ve uncovered, I have a borderline severe magnesium deficiency. I am taking a combination of magnesium IV’s, injections and supplements. The difference it makes for me is nothing short of miraculous! I have a decrease in muscle tightness, pain & weakness, less joint pain, major reduction in neck pain & headaches (thus many less trips for a chiro adjustment) as well as a major improvement in anxiety & depression! Imagine that! My husband calls it vitamin bitch-be-gone, and can usually tell even before I can when I’m getting depleated LOL
My doc thinks my mag deficiency is due to insulin resistance. Apparently it inhibits proper metabolization of magnesium. So, I will have to get multiple problems under control before they will all start to balance out.
Until recently I had no idea that my 10 years of ill health were directly related to my 14 years of undertreated hypothyroidism. My new doc has even told me that my depression and generalized anxiety disorder was a misdiagnosis! So 10 years of many drugs (and being convinced I was nuts) for the wrong problem really pisses me off!!! But now I know . . . and knowing is half the battle!
So Robyn, from one research junkie to another . . . kudos for this great post! Sometimes awareness IS about knowing there are things that you don’t know you don’t know! I wish I would have known there was so much that I didn’t know 14 years ago!
All, I am so moved and motivated by your letters and comments. It’s this whole new world where instead of being alone in my suffering (with no one to have a clue how I’m feeling), people are sharing my issues and even conquering them! So many of these posts could have been written by me! So thank you, Dear Thyroid, for bringing together this amazing community of people! I am honored to be among you.
Now excuse me, but I HAVE to go do some research on selenium! <3
Robyn-as usual, I learn even more after reading your posts. I’ve just started on subling. B12 and D3 as my #s are “normal” but Free 3 is low nml-I think i’ll also start selenium and magnesium to see if it will help what appears to be a conversion issue—thanks again for all you wonderful researchers for doing the work that i have just gotten too tuckered out doing-and the brain fog isn’t helping store the info in my brain pan.Good job