Tag Archives: Thyroid Cancer

Still Bargaining…

21 Feb

Finally! Something to celebrate!

I just got a call from U of M, so I thought I would do a lunch hour post to share some news.

First, my ultrasound showed no abnormalities and my thyroglobulin (cancer tumor marker in the bloodstream) level is still undetectable.

The rest of my numbers are as follows:

  • B12: 490 (normal, and way better than before)
  • Vitamin D: 31 (normal, but could be higher)
  • TSH: 1.55 (I think that’s high – Dr. E likes it)
  • T4: 0.97 (I think that’s low – Dr. E likes it)
  • T3: 2.4 (that’s just about perfect, and that is while taking Cytomel)

So what does all this mean? It means I FINALLY get to go back on 125 mcg of Synthroid. Dr. E wants me to drop the Cytomel, but I begged to stay on it. We’ll see what she says.

OTHER NEWS:

  • I continue to live flour-free, and I think I am happy with the choice. I feel healthier overall, so it’s worth it. I never thought I could win the battle over bread, but I did! I don’t even crave it anymore.
  • I added back my iodine supplement (Iodoral) and started taking Selenium. It’s been 4 days, and I have lost 3 pounds. It’s hard to attribute the weight loss to any one thing, but whatever, I’ll take it. I am researching and closely monitoring my response to iodine, and will post separately about my findings.
  • I am feeling really good. I always forget to reflect on the improvements in my health. My energy level is almost normal, my hair totally stopped falling out and looks normal, my skin is not as dry, and I don’t feel as depressed as I did before. What’s changed? Cytomel? Flour elimination? Added estrogen? The fact that I have been exercising a little bit more? There’s no way to know, so I will just keep doing what I’m doing!

Cheers to being cancer-free, and to a higher dose of Synthroid!

***THIS JUST IN***

 I get to stay on 5 mcg of Cytomel with the new increased dose of 125 mcg Synthroid. It’s what I have been pulling for all along! I am seriously jumping for joy!

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The Flourless Experiment

15 Feb

I made it through 21 days of no flour. I incorporated Ezekiel bread into my breakfast. I ate more fruit, vegetables and lean meat. I skipped the quick airport and meeting snacks when I traveled to Florida last week. I even ordered salad at Disneyland. And what were the final results?

-0.8 pounds

That’s right, my initial weight loss kinda rebounded back, and I basically have nothing to show for my suffering. It’s true, I didn’t gain anything over the past three weeks, which is positive. And my digestion, brain fog and energy level have maintained their improvements. But what’s the use if I am still overweight? Today at lunch I ate 4 croutons in my salad and I had some vegetable dumplings. And boy, did I regret it. My stomach ballooned out and I almost fell asleep at my desk at 2:00 p.m. I have ruined my favorite food forever, and I am still fat!

So, here we are in My Journey…

DENIAL: I will be fine. This is the best cancer to get!

ANGER: I am NOT going to be one of those people who get really fat and have permanently hoarse voices!

BARGAINING: Okay, maybe if I try Armour. Or adding Cytomel to my Synthroid. Or giving up flour. Maybe then I can have my old life back.

DEPRESSION: Why do I even bother? Now the best I can hope for is never eating white bread or noodles again and still being overweight! Why did this have to happen to me??

I guess the next step is ACCEPTANCE. But can I go there after I have one more round of bloodwork this Friday? After all, I did start on birth control pills. Maybe the added estrogen is interfering with the thyroid meds. Maybe a magical dose increase will make me normal again?

Oh wait, now I’m back to bargaining.

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Weighting

21 Dec

I’ve been on the reduced dose of 112 mcg Synthroid for almost a month now. I hate it. I am tired and freezing cold all the time. I have chronic headaches and a strange ringing in my ears. And worst of all, I never know if my clothes will fit from one day to the next.

As tempted as I am to take brown seaweed and black licorice supplements (Dr. Oz said they work!), I am holding to the promise of playing by the rules until my January 25 appointment. Hopefully by then, my labwork will match my symptoms. I have grand dreams of saying “I TOLD YOU SO!!” and demanding an upped dose of Synthroid coupled with T3 for energy. But if my labs are consistent, I will be stuck with what I’ve got.

I so wish I could keep everything in perspective, especially when it comes to the number on the scale. But I just can’t. I’ve gained 12 pounds now since my surgery. I am heavier now than when I came home from the hospital with a newborn. I really would like to hide this in shame, but in the hopes of recovery, I am putting it all out there for other thyroid cancer survivors to see. THIS SUCKS, and I miss my thyroid. I am not doing anything differently, and the weight just keeps magically appearing. Thyroid cancer = fat cancer, and I fear that no amount of medication will give me my metabolism back. This is like my worst nightmare coming true.

Or is it?

Last week, as we were rushing out the door for Ellie’s Christmas Concert, Mary smacked her mouth into our open TV stand door and severed her gums. There was blood everywhere. I didn’t know if I was going to pull back the washcloth and see missing teeth. And it was terrifying. In the end, she ended up with a bruised and puffy lip and an amoxicillin prescription. What would I do if something was really wrong with one of my girls? Or what if I was actually dying from my cancer instead of just growing out of my favorite pants? It’s time to put myself in check (again). I may be exhausted and fat, but at least I’m here. 

I can only control what I can control. It’s time to face the inevitable. It’s time to clean up my diet. Even if it doesn’t reverse the number on the scale, it might improve my energy level and my overall health. I eat a low-calorie diet, but it’s made up mostly of the four Cs…

  • Coffee
  • Coke Zero
  • Carbs
  • Cheese

I am meeting with a nutritionist in Thursday. My New Year’s resolution is to focus on my health instead of my weight. That is, at least until January 25.

Four months post-thyroidectomy

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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.

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The “After” Life

3 Oct

This weekend I saw 50/50, a new movie about a 27 year-old cancer patient. I couldn’t relate to most of it, except the scene before his surgery. It was so right-on that it was scary. I almost forgot that I had been through it all myself. It’s been seven weeks since my surgery. 53 days, to be exact. I started a new job, and I have been so busy that I dont really know how to measure how I feel. I guess I feel normal…some days I have boundless energy and on all the others I depend on an afternoon coffee to get me through. I have gained two pounds, which is better than many other people in my situation. My TSH is suppressed, and I probably won’t have my scan until 2012. Is the war over? It has certainly slowed down.

Once in awhile, I still have to fight. I picked up my Synthroid prescription last week, and glanced at the bottle before the pharmacist put it in the bag. Oval pills. Not the perfect circle ones that I’ve been taking. My face got hot when she asked me if I’d like anything else.

“I’d LIKE the drug that my doctor prescribed for me. But YOU switched it out with a generic.”

She apologized and gave me my Synthroid, and I walked out feeling a little embarrassed by my overreaction. After everything I’ve been though on this journey, I should just accept medical errors and continue to watch my own back. But I still get angry. I am still having the imaginary tell-off to Dr. P in my head, where I point at my scar and say, “Who was the one who didn’t know where my thyroid was again?” Or maybe, “How are your other cancer patients doing on the Zoloft that you gave them?” Will I ever get to say my peace? Will it even make a difference?

At the end if the day, I am a survivor. But I don’t feel much like a cancer survivor. As I sit in the U of M Cancer Center waiting room, I am humbled. I am so grateful that this happened to me and not to one of my children. As much as I would like to fit into my old jeans, I am grateful I am not sick from chemotherapy. If not for my scar, you would never know that I belong to this club. Most days, I feel GOOD. I am happy in my life. I can still run 3 miles (a little slower now), and I keep up in TurboKick and Zumba. I am loving the new challenges in my job, and meeting brilliant people from all over the world. I am present in every moment…savoring every hug from my girls and every laugh with my husband. I made it to “after.” Still alive. Still working. Still running. Still singing. Still eating ice cream and watching TV in my recliner. Still me.

7 weeks post-thyroidectomy…my scar fading into a crease.

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