The Hypothyroid Trouble-maker

November 7, 2017

HypothyroidWriter.com hypothyroid hellion blog post Sarah Lentz
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You are nobody's snowflake.

Whatever you want to put after the word "hypothyroid" -- trouble-maker, hellion, badass -- you know you can't give up in the push for better thyroid care. There's too much at stake. 

I don't know how many doctors you've met who've told you something along the lines of the following:

[*NOTE: Might be good to have something nearby (preferably not a person) to punch or squeeze while reading this list.]

  • "You don't look sick to me."  
  • "Well, your TSH value is within the normal range, so we shouldn't make any changes to your dosage."
  • "Whatever's going on probably isn't thyroid-related, but you should probably see an endocrinologist."
  • "We don't prescribe T3. It's not safe. And we don't prescribe NDT, either. Most people do fine or even better on synthetic thyroid replacement."
  • "If you're feeling anxious or depressed, we can explore other medications that might help with that."
  • "We can look at other things, run some other tests (metabolic panel, vitamin D, CBC panel, etc.), but I'm guessing this is probably just a viral thing, and that should clear up in a week or so (or whenever -- give it a year)" (And yes, I'm paraphrasing -- a bit). 

Okay, we're taking a break from that, now, since I can't be the only one who's squirming in her seat right now and wanting to break things. 

I should mention that I've never taken anything but the standard synthetic T4-only replacement (sometimes as Synthroid, mostly as a generic "equivalent"). 

So, I don't know how much better I might feel with NDT or with supplemental T3. But I'd like to find out.

I get comprehensive thyroid blood tests throughout the year, checking not only TSH but also free T4, free T3, Reverse T3, and thyroid antibodies. I also get a full metabolic panel at least once a year, if not more frequently. 

We can't afford right now to go out of network and pay for a Functional Medicine doctor or a Naturopathic Doctor, and whenever I've asked for supplemental T3 -- because my free T3 value has been consistently in the lower quadrant of the normal range -- I've met with resistance. 

I just called the pharmacy, though, after reading some tips on the Stop the Thyroid Madness website (sttm.org), and asked what doctors in the network tend to prescribe desiccated thyroid. The pharmacist I talked to answered all my questions and said she didn't think my primary doc would refuse to prescribe it, though she'll probably want more frequent testing. 

I could live with that. So, I sent her a message, and we'll see what happens. 

Of course, now I feel like an idiot for not trying this before. 

***UPDATE: My primary doc replied, saying she doesn't prescribe Armour thyroid, and she recommended consulting an endocrinologist. I then sent a message to my endocrinologist asking her to prescribe NDT, and she said she wouldn't prescribe that, but she'd be willing to prescribe supplemental T3 "on a trial basis (3 to 6 months)." It's not what I asked for, but I'm taking it, and we'll see. I'll be back for another thyroid panel in six weeks.

My rallying cry has usually been about the following things:

  • Insisting on regular and comprehensive thyroid testing
  • Keeping track of symptoms (onset, type, and severity) and letting the doctor know when you're experiencing them -- insisting on a thyroid panel to tie your current symptoms to specific values
  • Insisting on a slightly higher dosage of thyroid medication, if needed, to bring your TSH to the level at which you feel best
  • Taking good quality vitamin, mineral, and probiotic supplements to support your thyroid and aid in the conversion of free T4 to free T3
  • Building mini habits that help increase energy levels and conserve that energy for the most important things.
  • Having a creative outlet, because it's good for the brain and the mood to create things that don't undo themselves in an hour or less (like housework ... or make-up). 
  • Being kind to yourself and to others -- and avoiding those whose company and conversation suck the life out of you or set your nervous system on "nuclear." We have less energy to begin with, so it doesn't help when we're around people who feel the need to criticize us (not to be helpful), insult us, and remind us every chance they get that they hold us in contempt. Cut them off. Because otherwise, you might end up doing or saying something you'll regret. Cutting them off is kinder to you both than giving them unlimited access to you. 

I have never argued against the idea of fighting for NDT or supplemental T3. If I haven't emphasized it enough, it's only because I thought that, for us, our clinic wasn't remotely inclined to offer anything but the standard T4-only supplement.  

And I thought desiccated thyroid would cost a lot more than levothyroxine (or even brand name Synthroid), but it's actually less expensive!  So, even without insurance coverage, we could totally hack that.

From what I've read, 150 mcg is roughly equivalent to five grains of desiccated thyroid. If you have any experience with this, I hope you'll comment here or on Facebook or Twitter

Be the pain.

Just so we're clear, I'm not saying we should be total jerks to everyone -- though, let's face it, hypothyroidism can make it hard NOT to be a bit on the salty side. 

And if you're dealing with crazy nervous system issues -- central, peripheral, or both -- self-medicating with alcohol (to depress the nervous system) can easily become a favorite coping mechanism. I can't afford to drink wine every day, which is probably a good thing, so I save it for weekends. Awfully nice to sit in the comfy chair with a glass of wine and something good to read.

I grew up hypothyroid, so I have no idea what it's like to live without it. I don't have fond memories of when my brain wasn't foggy or when I had energy to spare. 

Related (guest) post: "How is this normal? Diagnosed with hypothyroidism at age five."

I do have fond memories of finding ways to work around my distractibility and brain fog (in order not to flunk out of college). Or writing papers that earned glowing praise from my college professors. Or being asked to collaborate on a book of Peruvian and Oregonian poetry with two of my favorite professors. 

Like anyone with hypothyroidism, I have better days and worse days when it comes to brain function, energy levels, and the ability to drive somewhere without getting lightheaded and even feeling as though I'm about to black out behind the wheel (though that last thing has only happened twice). 

Related post: "Thyroid care and supplements: what has helped and what has NOT." 

I can't say with many who developed it later in life, "This is not normal for me! I didn't used to be this way. Something has changed ..." 

But I can say with them, "I'm not going to settle for medications that make me feel worse -- or that don't do enough. If I have to make myself a pain in the butt to one doctor after another, I will keep pushing for a chance to try NDT or supplemental T3 (or both, if necessary). Or I will find a way to pay for a doctor who will let me try these thyroid-replacement therapies that have helped so many others." 

[*Update: I may not have to pay for an out-of-network doctor, after all, and I really hope I won't, because it took me a while to find a primary doc (my P.A.) who really listens, and I'm not in any hurry to move on to another doctor.]

By the way, if you're interested in finding a doctor, this article on the Hypothyroid Mom website -- "30 Online Resources to Find a Good Thyroid Doctor" -- is a great place to start. 

And, heck, here's a long list of hypothyroid symptoms on the same website, if you ever wondered what symptoms you're experiencing could be thyroid-related. 

Because it helps to see how many symptoms can signal thyroid problems -- and how symptoms and conditions that may not seem related actually are (or can be). 

Back to the "be the pain" point, though . . .

The hard truth is that sometimes you have to be someone's pain in the A-double-dollar-signs in order to pursue something worth pursuing:

  • a thyroid hormone replacement that actually helps you feel better
  • regular and comprehensive thyroid testing
  • an educational environment that doesn't hold back or overwhelm your kids
  • a doctor who listens, takes your words and your hard-earned knowledge seriously, and does everything he or she can to help you get better
  • a doctor who doesn't respond to the question, "Could this be perimenopause?" with the words, "Your'e too young to be going through menopause." (face-palm) 
  • a doctor who doesn't reply to your description of symptoms with advice to put your kids in public school and get a job outside the home -- or with a prescription for Xanax (or a newer drug that he thinks will make you a better and happier wife, mother, etc.)

So. Freaking. Tired.

Okay, so when I typed that last heading (with my eyes closed), I was mostly just thinking of how good a bed with a fluffy pillow sounds right now. But I do love a double-meaning. So, what are we tired of?

For one thing, we're tired of well-meaning folks saying things like . . . 

  • "You don't look sick."
  • "Have you thought of giving up gluten?"
  • "You mean to tell me you're hypothyroid and you haven't given up gluten?! 
  • "Have you thought of giving up meat / sugar / processed foods / dairy products ?" 
  • "Are you sure you should be eating those jalapeño kettle chips? (Me: "Yes! Yes, I am." <huge crunch.>)
  • "So, what are you doing right now to help yourself feel better?" (i.e. "Please tell me, so I can criticize what you're doing or not doing and tell you what you should be doing," because whatever you're doing it must not be enough.)
  • "How often do you exercise? And lifting the fork doesn't count." (Me: "The hell it don't.")

And we've already covered some of the frustrating things doctors say. After my latest appointment with the one doctor in our clinic whom I hadn't yet seen, I'm gladder than ever that my primary care doc is a P.A. -- and a good one.

Lord, deliver us from those who think and even say things like, "We're the experts here. We know better." Because the ones who say that -- who assume that their education and experience with other people has made them experts in everything they need to know about you -- usually don't.

Your turn. 

What have you heard from a doctor that made you want to say things like, "Are you serious?" or "Did you hear anything I just said to you?" or "Well, this was a waste of time." 

Stop The Thyroid Madness (STTM) shares stories on Facebook of terrible doctors who've made life even harder or at the very least were no help whatsoever to thyroid patients all over the world. So many stories! 

If you have any good doctor stories to share, though, I'd love to read them! 

And if you haven't yet visited Hypothyroid Mom on Facebook, it's well worth a (daily or at least weekly) visit.

Thank you for being here, and I hope to read something from you, too!

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To get the thyroid care you need, sometimes you need to be a trouble-maker. Complacent experts need folks like you to shake them up, piss them off, and challenge them to look beyond the standard script about T4-only supplements like Synthroid.

By Sarah Lentz

Writing and designing book covers are two of Sarah Lentz's favorite things. She lives in Minnesota with her husband, their four kids, and two messy but adorable guinea pigs.

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