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Finding Normal

26 Dec

I have been waiting for three years to write this blog. As we close the year, I am celebrating FINALLY achieving the New Year’s Resolution that I have had since 2009. I have achieved normal.

After my thyroidectomy, I tried everything to relieve my hypothyroid symptoms. Based on all my research, I believed natural thyroid hormone replacement would be the answer I was looking for. For a majority of people, Armour Thyroid or NatureThroid is all it takes to resolve the symptoms of weight gain, dry hair that falls out, exhaustion, depression…(the list goes on). I had the opposite experience. Coming off of my stable dose of Synthroid put me in an uncontrollable tailspin. A year later, once I finally gave up control and went back on 125 mcg Synthroid + 5 mcg Cytomel (as my endocrinologist prescribed), I stopped the tailspin. But could I ever recover the “normal” that I lost so long ago?

Over the course of my journey, I have tried many weight loss strategies, including strict calorie counting, vigorous exercise, the elimination of wheat and the elimination of dairy. Absolutely nothing worked. Imagine my devastation as I found myself 20 pounds heavier from all of my medication changes. Even after stabilizing on Synthroid/Cytomel, starving and working out like a crazy person, the best I could do was a 3 pound weight loss over 8 weeks. I believed I was doomed to live a life avoiding pictures and mirrors. I would never feel comfortable again. I would not be able to shop in my favorite clothing stores, and I would never be excited for a dressed-up event ever again. I started every morning on the scale, filled with shame and dread. I went to see my holistic doctor one last time in desperation.

She prescribed the HCG diet. It’s controversial, it’s really hard, and it probably isn’t a good idea for someone who wasn’t already committed to doing whatever it takes. But it literally changed my life in just one month.

  • Phase 1 (2 days): Daily HCG injections and eating a “loading” amount of high calories and fat
  • Phase 2 (23-30 days): Daily HCG injections and eating only 500 calories a day…no sugar, no starch, no dairy, NO DIET SODA
  • Phase 3 (21 days): No HCG injections, 1500 calories a day, no sugar, no starch
  • Phase 4 (life): Slowly add back starch and sugar

I lost 9 pounds my first week. I am currently in Phase 3, and I am down 18 pounds and 14 inches. It was pretty hard, especially during the holiday season. But the quick results made it much easier to adhere to to the strict diet. The HCG reduces hunger and weakness, but I did have to temporarily postpone my workouts. I did a few TurboKick sessions that made me feel like I was going to pass out. That was really the only “con.” Critics say that anyone would lose weight by eating 500 calories a day. However, I was literally burning more calories than I was consuming during my low-iodine diet, and I didn’t have any noticeable weight loss at all. As for regaining my lost weight, I am confident that I will maintain, because I was already in the habit of watching my calories and exercising.

Before: My heaviest weight ever, exhausted and riddled with hypothyroid symptoms. After: Lower than my pre-surgery weight, happy and healthy!

Before: My heaviest weight ever, exhausted and riddled with hypothyroid symptoms. After: Lower than my pre-surgery weight, healthy and happy!

Because my thyroid medication is now stable, I feel very normal. My hair and skin look better than ever. I sleep great and I have plenty of energy to get through the day. Before my thyroid cancer diagnosis, I would not be happy with my size 8 pants. I would still be beating myself up and trying to fit into my wedding dress from 2002. Not this time. Today, I celebrate my healthy BMI, my comfortable jeans and my favorite Coldplay T-shirt. This Christmas, I posed for as many pictures with my family as my children would tolerate. I found normal. And I am never going back.

Christmas 2012 - enjoying my normal hair, my comfortable clothes and my wonderful family

Christmas 2012 – enjoying my normal hair, my comfortable clothes and my wonderful family

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Letter to Dr. Jennifer Ashton

1 Dec

Recently, Brooke Burke-Charvet was diagnosed with thyroid cancer. Shortly after the news was released, Dr. Jennifer Ashton spoke about it on ABC News. Naturally, she said, “patients will do incredibly well…it will not affect her life.” I was annoyed, but not surprised. I reached out to Dr. Ashton via Twitter, asking her to refrain from dismissing the difficulties of thyroidless life. Many of my fellow thyroid cancer survivors friends did the same. It is Dr. Ashton’s Facebook response to us that has me infuriated. Here are the condensed highlights:

Here is my official response to the plethora of inaccurate, vicicous, hurtful and reactionary comments made following my segment on Brooke Burke’s recent diagnosis of thyroid cancer:

I am a practicing physician, who actually takes care of patients. Therefore, on a daily basis, I am involved in patient care, rather than trolling social media. 

 Perhaps many of those who were irate at my saying thryoid cancer is ‘good’ should go back and rewatch my segment. AT NO TIME DID I UTTER THOSE WORDS. IN FACT, BROOKE BURKE HERSELF DID, IN QUOTING HER ONCOLOGIST.

I would consider it incredibly poor form to mention any ominous, negative, skeptical, frightening, or discouraging comments about her disease on national television. She bravely brought her diagnosis to the public and it was my hope to ENCOURAGE those fighting the disease.

As an Ivy-League educated, Board-certified physician in Women’s health, (as all physicians do) I have been formally educated and trained in treating the entire patient, not just a body part. That is why medical school is four years and residency is four years. We learn the ENTIRE body, not just one specialty. I have patients with ALL types of cancer, including thyroid cancer. 

This journey has made me strong. But not strong enough to sit back and let her call thyroid cancer survivors vicious social media trolls. My letter to Dr. Ashton follows.

Dear Dr. Ashton,

I was very sorry to hear that one of my fitness idols, Brooke Burke-Charvet, was diagnosed with the disease that ripped my body apart. When I saw her video blog, I pitied her…I remember thinking I had “good cancer” too. And who told me I had “good cancer?” My stupid, stupid doctor. And why did my doctor say that? Because the pervasive thinking in the medical community is: “Outcomes are everything. Thyroid cancer doesn’t kill as many people as some other cancers. Quality of life post-surgery is not really a problem.” Guess what? It’s a HUGE problem. But since most doctors are unsympathetic, our problems are brushed off as imaginary, self-inflicted or exaggerated.

When you went on national television and said, VERBATIM  “patients will do incredibly well…this will not affect her life,” I thought, what a waste of an opportunity to set the record straight about thyroid cancer. Instead, our doctors, employers, family and friends will continue to feel justified as they condescend us and blame our thyroidless symptoms on other things. So I reached out to you in hopes you would recant your statement and at least acknowledge that while thyroid cancer has an excellent prognosis in terms of life expectancy, that life can be quite altered. Instead, the entire thyroid cancer survivor community was called names and further dismissed in our fight for true awareness.

I get why you are defensive. You should be. You are very, very wrong. It is not your words that we are most offended by, it is your attitude and beliefs about cancer patient care. We do not wish to be lied to for purposes of encouragement. It would be very encouraging to me to have a doctor confirm that I am not crazy and that my symptoms are real, and are to be expected after a thyroidectomy. Instead, I was supposed to go back to “life as usual,” so I must have suddenly come down with a case of obesity, depression, high cholesterol, high blood pressure, chronic fatigue, hair-falling-out-in-clumps, shaky-hands syndrome. If I had not connected to the wonderful community of thyroid cancer survivors whom you categorize as “vicious,” I would believe I was all alone. I might be focused on correcting my plethora of new health problems with additional, unneeded medications instead of focusing on optimizing my thyroid medication and the new lifestyle it requires. All you had to do was say,” I apologize if I offended those who are battling this chronic disease.” Instead, you had to throw your Ivy-League education in our faces, as if that qualifies you to know more about our daily lives. (P.S. “Vicious” is not spelled with an extra “c.” You spelled “thyroid” wrong. And “re-watch” is hyphenated. But what do I know? I only went to a lowly little college in Middle America.)

I hope with all my heart that thyroid cancer will not affect Brooke Burke-Charvet’s daily life as much as it has mine. But in case it does, I hope she will connect to doctors and fellow survivors who can give her the real encouraging words she needs: “You are beautiful. You are tough. And while your thyroidless life will be different, it can still be great.”

Sincerely,

Sarah Young, Thyroid Cancer Survivor

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Lucky Me!

14 Jun

Lucky Me!

How many times have you heard this since you were diagnosed?

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No Shortage of Time

2 Apr

Well, I guess I panicked for nothing. Because there has been a shortage of Thyrogen for an OUTRAGEOUS two years, the nuclear medicine department at U of M is overbooked. I won’t have my scan until July 16, which means I will start the low-iodine diet (we thyca survivors call it LID) on July 2. Plenty of time to get myself down to Whole Foods and Trader Joe’s so the experience doesn’t have to be so horrific. I guess I will be snacking on apples during the fireworks this 4th of July, and I won’t be eating spaghetti the night before my annual 5K. That’s okay, because I am about to drink my coffee, and much to my delight, I don’t have to go “creamless” for another few months.

The journey continues!

9 Down…12 To Go?

4 Feb

I have been officially “flourless” for 9 whole days. And as I sit here in my recliner, enjoying a glass of Pinot Noir from Oregon, I gotta tell you…it ain’t that bad!

For the first 3 days, I had an awful headache and felt like I was coming off of drugs. Then in the last few days the fog began to clear. My watch and my rings got a little looser. I’ve started thinking clearly. The only way I could describe it is like putting your glasses on in the morning…the world is suddenly in focus. I can think straight. Oh yeah…now I remember! I used to be smart! I used to be able to get through my work day without feeling confused and overwhelmed! I used to be able to work out and still walk the next day!

I feel pretty good. Some of this might be attributed to the Cytomel finally kicking in. Whatever it is – I’ll take it. The biggest change I have made is the elimination of flour. I replaced my sugary morning cereal with a slice of Ezekiel flourless toast. I still eat rice with my stir fry. I still eat sugar…it’s in my salad dressing and my occasional handful of Hershey’s Kisses.  I don’t even feel that deprived anymore. And believe me, I would tell you if I did.

I was listening to Coldplay’s new album this morning – Mylo Xyloto. Those of you who know me know that Coldplay is my all-time favorite band. And there is nothing I love more than one of their live shows. As I cranked up “Charlie Brown,” I imagined myself at the concert, singing, screaming, jumping around. And in my head, I am my normal-sized, cancer-free self.

Coldplay releases butterfly confetti during In My Place. How thyroid-appropriate!

Tickets go one sale tomorrow for the August 1 concert. And mark my words…I am going to make that vision come true. And if I have to pass on the bread basket for the rest of my life, I’ll do it.

Week 1 Results Recap:

  • Pounds lost – 2
  • Energy level – Good
  • Digestion – MUCH improved! I would even call myself normal!
  • Brain fog – Gone

Stay tuned!

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21 Days

25 Jan

I had my appointment at U of M today. I don’t know why I gear myself up for these appointments…they usually represent two steps on a 100-mile journey. And no matter how much I coach myself, I always end up emotional and whiny about my symptoms. In summary…

  • I am still on the very long waiting list for Thyrogen, and there is no telling when I will have my full body scan.
  • I need to do a neck ultrasound to make sure nothing obvious is going on with my lymph nodes…scheduled for February 17.
  • On that same day, I will have my blood drawn to test TSH, T3, T4, Thyroglubin (the tumor marker), and my vitamin B-12 and D. Until then, I keep doing what I’m doing with the Synthroid/Cytomel.
  • I already know the Cytomel is making me hyperthyroid because my body temperature was 99 degrees and my resting heart rate was 80. I gained back the three pounds I thought I had lost, so I don’t think it’s doing me any good anyway. My hope now is that after my bloodwork on February 17, Dr. E will let me go back to square one: 125 mcg Synthroid.
  • I did recently get back on birth control, so I hope that helps some of my symptoms…my OBGYN seemed to think it would at least level out the hormonal ups and downs. All these stupid hormones are connected, of course.

So what else can I do? I left U of M feeling hopeless. I checked my Facebook, and a friend posted this quote: “You can spend all day in the gym, but unless you eat clean, you are wasting your time.” It hit me like a ton of bricks.

I’ve thought a lot about giving up the love of my life (BREAD), but I haven’t actually ever done it. And I have to do something. I can’t just sit around and get fatter by the day. I LOVE bread. And noodles. And crackers. And all the wonders of white flour in general. But I don’t love them more than I hate being uncomfortable in my clothes. Maybe it’s time to face the fact that portion control doesn’t cut it post-thyroidectomy. I’ve been so devastated that my usual diet and exercise methods are failing me miserably, but let’s face it – there is nothing “usual” about me anymore.

It takes 21 days to break a bad habit. So maybe I don’t say goodbye to white flour forever…just for 21 days. What’s the worst that can happen? At least I will be able to look in the mirror and say “I TRIED EVERYTHING.” Tomorrow begins yet another leg of this journey. I am praying like crazy it’s the part where I finally crack the code.

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Kickstart my Heart

17 Jan

You’ll have to excuse me if this post is all over the place…my heart is racing and I have even more nervous energy than I usually do. Here’s a quick timeline of updates:

December 22 – Appointment with the nutritionist was a colossal waste of time that included going over the food pyramid. The best piece of advice I got: cut my lunch in half and bring it home for dinner to spread out my calories.

December 28 – Wiped out with fatigue and other hypothyroid symptoms, I went ahead and did my U of M bloodwork early. (I know, I know…I never take my own advice.)

January 4 – U of M confirms my worst fears…TSH is perfect at 0.6, T4 is 1.3 and T3 is 2.5. Since my T3 is at the low end of the normal spectrum, Dr. E actually complied with my request for Cytomel! I added a 5 mcg dose to my 112 mcg of Synthroid. It’s my last-ditch effort to get back to normal.

It’s been almost 2 weeks, and no change can be observed from the Cytomel except I did lose 2 pounds. I think. I am almost afraid to say it for fear of jinxing it.

Today – I have a cold, so I took my favorite drug in the world – Allegra-D 24-Hour. YOWZA! Either the Cytomel suddenly kicked in, or thyroid patients aren’t supposed to take pseudoephedrine. I feel like a little like Jessie Spano. “I’m So Excited! I’m So Excited! I’m So…Scared…”

http://www.youtube.com/watch?v=bflYjF90t7c

I really hope it’s just the pseudoephedrine that’s causing these jitters. I was really hoping Cytomel was the answer. To be honest, I’d take a lifetime of heart palpitations if it meant I could drop a few lbs. I still have my follow-up at U of M next week. In the meantime, in the words of Breaking Bad‘s Walter White, NO PSEUDO.

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Save the Butterflies

6 Jan

January is Thyroid Awareness Month

Dear Thyroid,

Why doesn’t anyone know about you? When the surgeons removed you from my body, they told me you were 5 centimeters long. That’s 2 inches – smaller than my pinky finger – and 1 cm was taken up by papillary thyroid cancer. You were so tiny, and yet you were in charge of my body temperature, my metabolism, and regulating hormones I can’t even pronounce. As you malfunctioned, I felt a level of exhaustion I didn’t even know existed. Running, Zumba, TurboKick, counting every calorie…none of it mattered because you weren’t working. But worst of all, no one believed me.

Four different doctors rolled their eyes at me. I was told I had postpartum depression, sleep apnea, low B-12, low iron, chronic fatigue syndrome. I was even told I needed to get over my “body image issues.” No one believed me that it could be my thyroid. After all, I had no family history. None that I knew of, anyway.

It took me 18 months of fighting to get my papillary thyroid cancer diagnosis. Since I was diagnosed, my mother and aunt were both diagnosed with Hashimoto’s Hypothyroidism. My sister was diagnosed with Grave’s Disease, and also has Hashimoto’s antibodies. Our thyroids are a mess. All four of us were dismissed, ignored, scoffed at and belittled for even ASKING about our thyroids. And even as we fight for optimal treatment, we have to deal with doctors, family and friends that think we’re crazy. They don’t think our thyroids really contribute to our weight gain. They don’t believe that our thyroids are the reason our joints hurt, our eyes are puffy, and we feel like we are walking through water. Even after we are diagnosed, we have to struggle. We have to be the ones who drive our own health care.

If more people were aware of thyroid disease, its symptoms and its treatment, millions of women like me could be saved this fight. We are not crazy. They are in the dark.

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