DEAR THYROID^TM

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 8^th:

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 11^th, 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 26^th, 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

Tags: Dear Thyroid, Dear Thyroid Searches, Marco Thylo, merck ceo methotrexate, save nature throid advocacy mary shomon

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