Tag Archives: Synthroid

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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Surrender

19 Oct

It’s been two whole months since I’ve blogged. During those two months, I have been on a self-imposed hormonal roller coaster.

Remember how I said I couldn’t give up on losing weight and achieving “normal?” Since my thyroidectomy 14 months ago, I have tried the following thyroid replacement medication combinations:

  • 125 mcg Synthroid alone
  •  90 mg Armour Thyroid
  • 112 mcg Synthroid alone
  • 112 mcg Synthroid + 5 mcg Cytomel
  • 125 mcg Synthoird + 5 mcg Cytomel
  • 125 mcg Synthroid + GTA Forte supplements
  •  125 mcg Synthroid + 10 mcg Cytomel
  • 65 mcg Nature-Throid alone
  • 97.5 mg Nature-Throid alone
  • 65 mg Nature-Throid + 25 mcg Synthroid

Do you know when I felt my best? I felt the most “normal” on the very first dose of medication – 125 mcg Synthroid. I have spent the last 14 months in a complete state of panic, distrusting my doctors, self-medicating, and fending off impending weight gain. And as a side effect of all of my medication changes, I created the very thing I feared – weight gain. My latest conquest was switching to Nature-Throid. It took me MONTHS to find a doctor who would prescribe it. I worked so hard to stabilize my vitamin and iron levels first and I did everything by the book. And similar to my experience with Armour Thyroid, my body completely crashed, I started having extreme hypothyroid symptoms and I gained five pounds. Interestingly, my TSH stayed low at 0.43, but my FT4 was only 0.6. (Side note: this completely proves that you can be hypothyroid with a low TSH!) I tried upping my dose of Nature-Throid only to be greeted with extreme sweating and anxiety, and three more pounds. Then I tried combining a smaller dose of Synthroid with a smaller dose of Nature-Throid…all to no avail. Two weeks ago, in a fit of tears, I switched back to my old regimen: 125 mcg Synthroid + 5 mcg Cytomel. I am watching my calories very closely and burning at least 2000 calories a week through exercise, and so far, I have managed to lose five of the extra eight pounds I gained. I am beginning to feel better and most of my other symptoms are fading away. I also started taking Raspberry Keytones supplements, and I have no idea whether or not they are helping, or whether it’s the thyroid medication.

What I do know is that I have officially surrendered control. I am not a doctor and maybe I really don’t know what’s best when it comes to my thyroid replacement medication. As per usual, I took “being informed” into the extreme of being counter-productive. What if I had never messed with my medication at all? I may have been able to maintain my weight after surgery. The extra Cytomel would have resolved my lack of energy, and I could have been “normal” by now. Instead I endured 14 months of fighting, second-guessing, feeling good, feeling bad, losing sleep and gaining weight. So if this experience was supposed to teach me something, I suppose it did. My UofM Endocrinologist really is a good doctor. The first time I saw her, she told me the first year would be hard, that I might gain weight, but after a year, things would level out. At the time, I refused to accept that in my brain. My body, however, did exactly as she said it would. Before I switched to Nature-Throid, I was genuinely feeling good. Perhaps I was just about to turn a corner before I stepped in with my control issues and screwed it all up.

Can we pretend the last two months never happened? I promise I will behave this time.

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LID: Week Two

13 Jul

Here I am – Day 12 of 19! By this time next week, I will be able to eat whatever I want. Surprisingly, I am finally starting to get into a groove and I don’t feel achy and starving anymore. I have also gotten a lot more creative since Week One.

Strawberry-Banana Smoothies – my new breakfast! I make my own, but also have found that the Tropical Smoothie Jetty Punch is LID-safe.

Hummus is one of my favorite foods…and I learned to make my own! I used dried garbanzo beans, imported tahini, lemon juice, olive oil and garlic.

What’s hummus without homemade whole wheat pita?

I even borrowed my mother-in-law’s breadmaker and made some french bread! It came out pretty well…I use it for natural unsalted peanut butter sandwiches.

I am still using MyFitnessPal to make sure I don’t overeat. Since I feel so deprived, I am worried that I will binge out on the foods I can have. This is the best I have ever eaten in my life. Here is what my food intake looks like:

Week One: I was right at an average of 1200 calories a day.

Week Two: I am averaging well under 1200 calories a day. In the old days, I would be so skinny!

I have lost two pounds, but I feel like they could come back at any moment, so I don’t know if I should count them yet. I also got my pre-scan bloodwork back and it is as follows:

  • TSH: 0.04 (I am sure Dr. E will try to take me off of Cytomel)
  • FT4: 1.1 (I would like it to be a little higher)
  • Thyroglobulin (tumor marker): <0.02 (I think that counts as undetectable, which is good!)

I see Dr. E on July 24 to get my scan results. I am preparing myself for the “you are on too much Synthroid” conversation. I may need to meditate on the drive down so I don’t scream at her. I have decided that if I clear this scan, I am going to have my holistic doctor, Dr. L, manage my thyroid replacement medication. Dr. L already started me on monster iron pills (Ferrex) and B-12 injections that have made a huge difference. My only remaining struggle is losing weight, and I will try ANYTHING to make that happen. If that means staying off dairy even after my low-iodine diet is over, then hold the cheese, please!

Even though I am obsessively focused on the way thyroid cancer has affected my appearance, I am also anxious to get the “all clear” from my scan next week. The last thing I want is more surgery or the dreaded radiation treatment. I really appreciate your prayers! I will update you after my week-long U of M “vacation.”

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Dear Thyroid Doctor

22 May

Dear Thyroid Doctor,

Did you know that 25% of women will develop a thyroid condition during their lifetime? Look out into your waiting room…you will see at least 3 of these patients every day. According to the American Thyroid Association, up to 60% of those with thyroid conditions are unaware of their condition. They are coming to YOU for help. So why don’t you care?

You dismiss us. Ignore us. Pass us off to your staff members who care even less about us. You accuse us of lying, exaggerating, not trying hard enough, being clinically depressed. You alone hold the key to our quality of life, but you refuse to hand it over. You spend hours and hours diagnosing and treating other chronic diseases with the latest and greatest options. But if one 1960s thyroid drug doesn’t work for us thyroid patients, we must be the crazy ones.

Well, I’ve got news for you. The jig is up. We are smarter than you think we are. Smarter than the people you pay $10/hour to act on your behalf and deliver our “normal” test results. You can’t talk circles around us anymore. We’re not going to take it. We are banding together to expose your lack of compassion and lack of knowledge about our disease. So, unless you want to see your patient list decreased by 25%, I urge you to take this advice.

Do a little bit of research. TSH is fine for an initial diagnosis, but why on EARTH would you use a pituitary hormone as the sole marker for successful thyroid hormone treatment? Would you diagnose and treat a diabetic on their postprandial blood sugar alone? At a minimum, please check the TSH, FT4, FT3, and ALL THREE sets of thyroid antibodies. What do you have to lose? If our insurance won’t cover the tests, ask us if we will pay out of pocket. Nine times out of ten, WE WILL. We will do ANYTHING to feel better.

Please acknowledge that we are more than our lab values. Normal ranges do not apply to everyone. Talk to us about our symptoms. You are comfortable dosing an antidepressant until a patient feels better with absolutely no accompanying bloodwork. I am begging you…release us from the TSH prison!

Do not accuse us of lying about how much we eat or how much we exercise. You tell us “everyone can lose weight,” and “you just need to work harder,” and to “join Weight Watchers.” I challenge you to join me in the gym sometime. I log everything I eat into an online food diary, and I eat 1200-1400 calories a day. How much do you eat? How do you explain that I was thin before my diagnosis? Magically I started eating cupcakes all day at the exact same time my thyroid was removed? YOU need to work harder at optimizing our thyroid treatment. I assure you, it is easier than putting us on antidepressants, cholesterol drugs and insulin.

Take the time to train your staff. Frankly, they are jerks. They roll their eyes at us, they won’t answer our questions, and they have no idea what they are talking about when they deliver your messages. More and more, we are paying cash for your services. You are running a business. Accept accountability for your employees and their behavior. Hold yourselves to a higher standard. Do things right the first time. In the end, it makes less work for all of us.

Finally, explore thyroid treatment options beyond Synthroid. Synthroid alone works for very few patients…it’s like replacing an entire car with just an engine. (Sure, the engine is important, but how are you supposed to steer?) When a sick patient doesn’t respond well to one of the many antibiotics available, what do you do? You try another one. When a depressed patient doesn’t do well on an SSRI, you try an SNRI. Why are thyroid patients any different? What do you have to lose by trying a T3-T4 combination of drugs, or dessicated thyroid? Make yourself familiar with the other available options – Cytomel, Armour Thyroid, Nature-Throid, Westhroid. Consider using a compounding pharmacy. If you are concerned about the risks, then talk to us about them. Let us make that choice. But honestly, have you looked at the side effect profile for the top 5 most prescribed drugs in your practice? If you are comfortable with the risks of Zoloft, then you should be THRILLED to prescribe any of the thyroid replacement drugs.

If you partner with us in our quest for optimal health, we will be fiercely loyal to you. We will recommend you to the world. We will make sacrifices in budget to make sure you get paid on time. We will wait as long as it takes to see you, and we will greet you with a smile. So what’s holding you back? The only thing you have to lose is 25% of your patients.

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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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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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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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