Archive | November, 2011

The Difficult Patient

22 Nov

Remember the Seinfeld episode where Elaine’s doctor writes “difficult” in her chart? It’s one of my favorites. And now it is officially my life.

This little Armour Thyroid experiment has been a failure. All my research pointed to Armour as the ultimate answer to my prayers. But in 3 weeks, I have gained 4 more pounds, I am more tired, and I have such bad brain fog that I asked Andy what you call that red thing that you put fires out with. It’s the opposite experience that most people have with Armour. I even tried chewing it up like all the blogs say you should do to increase its absorption. Still I feel worse than I did on Synthroid. My labs are consistent…I should be anxious and losing weight like crazy and having heart palpitations. But I’m not.

Today I heard back from Dr. E’s office. She is happy to switch me back to Synthroid, but this time, I can only have 112 mcg. That’s right…because of my stupid TSH being suppressed and regardless of how I feel, she is REDUCING my hormone dose and then rechecking in January. This is how it sounded in my head:

“Sarah, since you are so difficult and had to play around with your medications, we are going to screw you over and have you get really fat and tired before we help you. That way, it will be our idea and not yours. Merry Christmas!”

I am so ANGRY.

There is really nothing I can do. I can exercise more and eat better, but really, I can’t switch doctors at this point. I haven’t even had my scan yet. So I have to force myself to do what she says and wait it out until January. My family promises to still love me even if I turn into a giant marshmallow. And I am buying a t-shirt that says, “It’s not my fault. It’s my thyroid’s.”

Why are doctors so afraid of a low TSH? Why does that number eclipse my symptoms? Why is a doctor HAPPY to hand out Zoloft, Xanax, Vicodin and Ambien, but won’t aggressively treat a thyroid disease? If you compare the side effect profiles of the drugs, it truly doesn’t add up. My personal opinion is that thyroid patients are labeled as difficult. Our symptoms are too easily misunderstood as whining. And after all, women are supposed to suck it up when it comes to quality of life. We need THREE different billion-dollar erectile dysfunction drugs, but the best we will do for thyroids is what we’ve been doing since 1960.

It’s not just frustrating, it is an outrage. So if you’re a furious thyroid patient who is stumbling upon my blog looking for answers, all I can say is this:

  • Look for support from Facebook groups, blogs, family and friends, but don’t expect your doctor to be your therapist.
  • When you discuss your symptoms with your doctor, be quantitative and try not to be emotional.
  • Make a list of questions for your appointments, not instructions.
  • No matter how bad you want to, never say, “If you always do C when A=B, then why did you waste all that money on medical school? Couldn’t you have just downloaded an iPhone app?”

Sigh…guess I have to take my own advice and be a patient patient. Until then, it’s not my fault, it’s my thyroid’s.

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Pig Thyroid and The New Normal

5 Nov
 

I am coming up on my 3 month surgery anniversary. Every time I start to complain, I force myself to count my blessings. I have a fabulous family. I have an awesome new job. I had cancer surgery this year, and I am functioning at 90%.

Am I awful for reaching for that last 10%? I fully acknowledge that I am blessed and I don’t have it as bad as I could…but I just can’t forget about my life before my thyroid cancer. “New normal” isn’t acceptable to me! What do I have to do to get to “old normal?”

For those of you who didn’t catch my update on Facebook, I had a follow-up with Dr. E, my U of M endocrinologist, had some bloodwork done, and got some news.

    1. My Tg level (cancer tumor marker) is UNDETECTABLE. Not even there.
    2. I will still need a whole-body scan (WBS), but I can put it off until Thyrogen injections are available. The Thyrogen will allow me to “fake” hormone depletion instead of actually going off of medication for 6 weeks. That would be a nightmare! Unfortunately, there’s a medication shortage, so I am on a waiting list. The undetectable Tg gives us all peace of mind that I have plenty of time to wait.
    3. My labs show crazy hyperthyroidism. Normal TSH is 0.3-3. When you have thyroid cancer, they want you to be a little on the hyper side…like 0.1-0.3. My TSH was less than 0.01.
    4. You would think that with numbers like that, I’d be losing weight like crazy, having heart palpitations and sweating to death. Nope. Just the opposite. I’ve put on another 5 pounds (grand total = 7) and I feel like I am walking through water all day. I self-medicated with my old supplements for a pick-me-up. I know, I know…it’s so bad. But I start every day on the scale, and I freak out when that number starts to creep. The supplements probably skewed my TSH results, and they didn’t help my symptoms much, so I put them away for good.
 
  1. Dr. E suggested I switch from 125 mcg Synthroid to 90 mg Armour Thyroid to see if I feel any better. Armour is dessicated pig thyroid. Yuck! But everything I have read suggests that many patients do better on Armour because it contains T1, T2, T3, T4 and calcitonin. Synthroid is only synthetic T4. T4 is the active thyroid hormone, and it supposedly converts to T3 in your body. But it seems logical to me that without a thyroid, I need to replace the whole spectrum of hormones. Armour Thyroid is very controversial, especially for thyroid cancer patients, because it is “natural” and less “stable” than Synthroid. I was surprised that an endocrinologist from a teaching institution would recommend it, but based on my personal research, I think it’s the best option. Who knows? Maybe a pig’s thyroid is just what my body was missing…?

 
 
I am on Day 6 on Armour, and so far, no difference. Every morning I wake up hoping for old normal. Andy reminds me that I have never in my life greeted my alarm clock with a smile, but it’d be nice not to feel like I drank two bottles of wine the night before. I’ll keep you posted.