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Marco Thylo, Thyroid Humor Column

Post Published: 27 August 2009
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Category: Humor Columns, Marco Thylo, thyroid humor, Thyroid humor column
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Marco Thylo posts are the farcical searches that bring up Dear Thyroid for reasons we can’t explain, and don’t really give a shit about —  they amuse us.

Before delving into our thyearches of the week, I wanted to share a few things…

Thanks to your moxie, irreverence, rage, joy, sorrow and grittiness, woven into the fabric of your letters, Thyrants, comments, and a host of other thyliteraryliciousnes, I am a bit braver.

We all know Katie has Graves’ Opthalmopathy. Unfortunately, due to medical negligence of endocrinologists past, I’ve hit a wall—limited treatment options. One of them, the only one I’m eligible for at this time, is Methotrexate. (Cancer medication for my lady balls?! How very reminiscent of a former Graves’ ophthalmologist who prescribed vagina gel for my eyelids. I know, right? Vagina + eyes = seriously?!)

Thanks to Mary Shomon and Liz Schau, and so many of you, I am learning how to become my own thyroid patient advocate.

Before agreeing to this treatment, I’ve been doing my due diligence, research. Though I don’t trust pharmaceutical companies anymore than I trust the majority of doctors I’ve seen, gathering as much information as I can to make the most informed decisions about my health, is paramount.

My Graves Ophthalmologist said that Methotrexate is used as a viable treatment for Graves’s eye disease. However, the onus is on me to accept his response as truth or to dig deeper. I chose to dig deeper. I wanted clinical trials on Methotrexate for Graves’ Opthalmopathy patients from Merck, the makers of Methotrexate.

From the time I was a kid, my parents always said, “Schwartz, whenever you want something, you have to ask for it, the worst thing a person can do, is say no; and always start at the top of the proverbial food chain… (Side note, in my family, we often call each other Schwartz.) I digress. I emailed Richard Clark, the CEO, President, Director and Chairman of Merck. I even found his bio on Forbes. In 2008, he earned 8.79 million dollars; you can read all about it here, you’ll see the pie charts regarding his salary, bonuses and my favorite, the other category.

Here is an excerpt of the first email I sent him on August 8th:

I have Graves’ disease and Graves’ Opthalmopathy. My ophthalmologist specializes in Graves’ Opthalmopathy. My choices are limited, due to the fact that my thyroid has only been balanced for 4 months. The only option available to me, as per his recommendation, is a small dose, and a six-month course of Methotrexate. In order for me to consider this as and option, I need to see studies of this drug as it pertains to Graves’ Opthalmopathy. If this drug has a high success rate, as per your studies, I’ll take it. If it does not, I won’t. My doctor will give his opinion. I don’t want an opinion. I want studies. I want proof. I want evidence, so that the choice I make, can, hopefully, help me reclaim this aspect of my life.

Mr. Clark, can you please help me to get this study? If so, I would be grateful to you.

It is important to note that I sent read receipts with every email. I did not hear back, so on August 11th, I emailed him again, here’s my excerpted email:

I sent you the below email on Saturday. Today is Wednesday. I know you’re busy, but I’ve got a real short window here to make a decision and I VERY MUCH NEED YOUR HELP.

Can you please send me clinical trials for METHOTREXATE for treating Graves’ Opthalmopathy?

He,  read my email and chose not to,  respond.

Last night, August 26th, I sent him another email, which he received and ignored. Here is the excerpted email:

I am flabbergasted that you received two of my emails begging you for help regarding a clinical trial for Methotrexate, a drug that your company manufactures and that you weren’t even considerate enough to acknowledge me or my request.

Not only is your lack of response disheartening, it’s downright offensive. What if you were in my situation and desperately needed this information to make an informed decision about your health and you were greeted with silence from a Chairman/President/CEO? How would you feel?

I hope you never find yourself in a situation where you feel helpless and your health is at stake. It’s a terrifying place to be. I wouldn’t wish it on anybody, not even someone as inconsiderate as yourself.

As I’ve decided, “Other” must mean, ignoring patients to maintain all of the company’s dirty little secrets, right? What else would other mean?

The reason I’m sharing this with everyone is two-fold, I believe so hard, that I have a responsibility to do everything within my power (legally), to obtain as many facts about my disease and treatments for my disease as possible. Second, I think people have a right to know what my experience with Merck was, not because you’ll have the same experience. Rather, it’s simply more information, period. As thyroid patients the more knowledge we have in our arsenal, the better equipped we are to make informed decisions about our courses of treatment.

I have no intention of trashing Richard Clark for his behavior and I don’t expect anyone else to. The point, luuuuvahs, is, even though my emails to RC fell on deaf ears, I won’t allow it to stop me from unearthing the information I need. Though I haven’t figured out how I will do this yet, I’m not going to give up the fight.

The bottom line, I suppose, is that the responsibility rests with me, nobody else. I have a choice, I can be empowered by that or pissed off, or both. For me, I swing both and that’s okay.

This brings me to one more point (Oh, Katie, really? Can’t you just do the searches, this is soooo boring. I know; thyrellas and thyfellas. I appreciate you for bearing with me as I spin my long ass yarn.)

Mary Shomon launched a new Facebook fan page, Save Natural Thyroid, “A place for thyroid patients to coordinate efforts to save natural desiccated thyroid drugs, like Armour & Nature-Throid, and prevent the FDA from removing these drugs from the market…

Let me tell you why I have a massive hard-on for Mary’s latest endeavor, even though I don’t take Nature-Throid and Armour, many thyroid patients benefit immeasurably from it. The more treatment options we have available to us; the better it is for us. Every patient is different because everyone’s body chemistry is different. As I see it, and this is just my opinion, we are being called upon to take responsibility and become actively involved in saving these two medications by working together, as a family, if you will, to invoke change. The burden doesn’t belong to one, it belongs to us all. I like that. I, Katie Schwartz, became a fan and plan to participate in the brainstorming efforts to find a way to collectively and proactively resolve this.

Thank you for indulging me. Onto this week’s hilarsquared searches:,  ,

  1. No thyroid no memory:No shit. I have news, with thyroid, if diseased, you still ain’t gonna have a memory. Fear not, there is a value-add, brain fog: a la “What was the question? Did I just answer her question? Was my answer relevant? Did I have a conversation with her today? I really need to give her a call, we haven’t dished in ages… Of course, I feel equally stupid when I put my keys in the refrigerator, my fruit in the closet and my pocketbook in the bathroom and then proceed to scour the house in search of all three. Fab.
  2. Thyroid on butt: Thanks for letting me know where my thyroid is. Finally, I know who to call; my local proctologist and ask him to scope my ass to treat my thyroid.
  3. Thyroid sex: For the umpteenth time, I realize you want to have sex with his/her thyroid. I suppose thyroid sex does have a fetishee flavor to it. Sexxing it up with a neck? I’m not feeling it. Oh, wait; are you the same person who searched for “Thyroid on butt”? If so, it’s all making sense now.
  4. Thyroid bacteria: Wouldn’t that be lovely, we could treat it and beat it in a week. Next.
  5. Thyroid and personality traits — Trick question, right? The appropriate search is, “What personality will my thyroid gift me TODAY?
  6. Thyroid cake humor: As in, “Let’s give her a birthday cake shaped like a butterfly gland?” Here’s your answer. Fuck you very much. As for other answers, I leave that to you, Dear Thyroidians. What do you think this search means?

Last but not least; Mary Shomon pointed me in the direction of a Thyfella who wrote a rather bold post regarding his thyroid disease. Yes, Martin dragged his ass out of the thyloset in the most honest, gorgeous, funny way. We’re real proud of him, as we’re sure you will be, too. Please read his wonderful post titled “Who’s Gonna Take The Weight“. We’re hoping he’ll consider sending us a letter to his thyroid for Dear Thyroid… A girl can dream.

PS: I owe a few Thyrellas emails, you know who you are. I love and treasure your emails. I will email you this weekend. Thanks for your patience.

Love,

ME

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25 Responses to “Marco Thylo, Thyroid Humor Column”

  1. Marilyn says:

    I just ran across some information on low-dose naltrexone (at the alt.support.thyroid usenet group) for thyroid patients. There isn’t a lot of research out there relating to thyroid, but maybe it would be of interest to you. I first heard about it in relation to multiple sclerosis because my dear friend lives with MS. Many MS patients are having great success against their symptoms and LDN is looking hopeful for other autoimmune conditions.

    You might want to start at naltrexone.org then check out the next couple of sites…

    This a blog by someone with Hashimoto’s thyroiditis who is treating it with LDN.

    Then there is this informational page

    Just another idea to try, methotrexate is pretty powerful stuff.

  2. Anonymous says:

    Thanks for mentioning Janie at Stop the Thyroid Madness and Mary Shomon. This is turning into something very big…I hope “They” listen. So many of us don’t want to be forced to take Synthetic Thyroid Hormone. It’s not fair. Everyone, visit Stop The Thyroid Madness.com and The Facebook sites: Stop The Thyroid Madness and Save Natural Thyroid. Power in Numbers!!!!

  3. Anonymous says:

    Sorry, I thought Janie was mentioned. But, thanks for the mention of Mary Shomon and the situation that is going on.

  4. Marilyn says:

    I tried sending this earlier but guess it got lost. I ran across something on the alt.support.thyroid usenet group that you might be interested in looking at for the Graves.

    A lot of people with multiple sclerosis are having good sucess with low doses of a drug called naltrexone. There is now thought being given to naltrexone as possibly useful in *many* autoimmune diseases. You can get an overview of it at naltrexone.org.

    The post at alt.support.thyroid listed a couple of other links; one is a blog by someone who used it for Graves, the other is a general information site.

    Just throwing it out there! I got interested because I have two dear friends with multiple sclerosis.

  5. Kathy says:

    Katie, I love your raw kick ass bravery. I love how you empower us to keep going, keep going, keep going…be pissed off, be scared, be tired, but just keep going..there are a lot of people to meet on the way. Some will turn their heads and pretend not to see you, some will avoid making eye contact, but then there are the others who will reach out a hand to touch you, because you have touched them. They will hand you water to quench your thirst as you run by.. and they will cheer you on, and be there at the finish line when you WIN! Thanks for cheering us on..the finish line is a long way off for me. I’m in the section where so many are turning their heads the other way, but I am going to keep on going..I know you’re there!

  6. Regina says:

    Katie,
    Thanks for giving me something to do at 2:30 this morning since I’m having thyroid INSOMNIA even on Ambien!

    I read your article. I think the reason you might not have gotten an answer to your request from Merck is that using methotrexate to treat Grave’s eye disease is an off-label use. There might not be any trial for this since its not approved by FDA for this pupose. Its original approvals are for cancers and RA and psoriasis. Maybe I can be of further help to you. I worked for a drug company in my previous healthy life. Maybe I can help you research or point you in the right direction…after some sleep, of course! You may contact me privately if you wish.

  7. Mary Shomon says:

    Katie — Shoot a variation of your original email down to the guys at Shiley Eye Center in San Diego. I bet they’ll have the answer. I’ll send you the email directly via email.

    And thanks for the shout out for the Save Natural Thyroid effort. For anyone who is interested in connecting with others who are concerned with protecting the right to natural desiccated thyroid drugs — like Armour and Nature-Throid — in the U.S. we’ve set up a Save Natural Thyroid Facebook group and a Yahoo list. You’ll find all the links/sign up information for both lists at http://www.savenaturalthyroid.com
    Thx Katie. You’re the best!!!

  8. Lisa says:

    Thank you for writing to Merck. Your bravery rocks and all that you, Liz, and DT provide mean so much to me and so many others.

    PS thanks for all the laughs, too!

  9. Yodat says:

    *que “eye of the tiger” music and a montage of Katie typing at her keyboard so fast that there is smoke coming out of her fingers! Good for you for inquiring and trying to educate yourself (as we all have) in order to find out if this is an option for you. I am sure we will see your findings here on the Dearthyroid website and I look forward to reading them.

    I appreciate that we are unbiased here in terms of what works for some might not work for all.

    I am glad to have a place to “play” and feel great about the things I am doing to keep my sanity and health! 🙂

    Katie and Liz you two are much appreciated! I hope you know that! 🙂

  10. Carole says:

    Just read a few articles , and comments on * Dear Thyroid * My first visit here .. Like your website very much! Thanks for all the work, and long Hours you have spent to help others!
    I can relate to every thing I have read so far,.. as I have been Hypo for 37 years , and before that Graves Dicease *VERY severe! Eyes that I could not close, * I slept with a mask over my eyes, because every one kept waking me up to make sure I was still alive! treatment way back then, consisted of 10 months of having my eye balls measured, and pheno… something… for my nerves! then surgery.. 7 1/2 hours on the operating table,.. 3 days in Icu… then 10 more days in hospital, .. Drs measured the goiter, … as big as a Grapfruit, they said! ok .. then another 27 years on syn. thyroid meds … all of them ….at one time or another!… *I thought my name was** yoyo roller coaster.**…!!! Then Armour Thyroid came into my life!! *** Hal lA Lou YA!!!!!! I am almost a balanced.. real human being , again!!! Now this!! taking my NDT away?? I will do whatever I can to support all the efforts made to save our choices,*.. (*a under statement) ,…..Thank you again for your great website! Respectfully .. . From a _old warrior..Ps…. my eye balls are 90 % back to almost normal!!

  11. @lindajones says:

    37.5 years ago my family doc prescribed a vaginal cream for my baby boy”s yeast infection–we were in FLA where, except for me and my boy, the patients were geriatrics. It worked, and always struck me as funny. It goes right up there with your eye cream!

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