Tracking My Hormonal Rollercoaster

13 Jun

I am officially in my second trimester! And as the baby grows, my hormones continue to be completely whacked out. I increased my Synthroid dose from 125 mcg to 137 mcg at 9 weeks. At that point, my thyroid labs were considered “normal.” But since my surgery, my TSH hasn’t been above 0.6. So when it started to creep past 1.0, I thought it was time for a bump. And thank God I pushed the issue, because just 6 weeks later, my TSH has jumped to 4.19. What would have happened if I hadn’t upped my Synthroid dose?

I have had hypothyroid symptoms before, but luckily, I have never really experienced extreme hypothyroidism like many thyroid cancer survivors are forced to endure during treatment. I have renewed sympathy for patients who have to let their TSH levels rise to 50 for treatment and testing. Here’s a glimpse of what it feels like to have a TSH of 4.19.

Last Saturday was my daughters’ dance recital. That meant spending most of the day on Friday at a chaotic dress rehearsal, and organizing costumes, hair, make-up, snacks, personal electronics and crafts for two children. Normally, I can handle this kind of stuff. Not this time. First, I made pancakes and forgot to add eggs. Then, I left the burner on for about 2 hours, nearly starting my house on fire. Then, I tried to wash one daughter’s hair with Dial hand soap. During my own shower, I somehow flooded my bathroom floor, and I was a half-second from pouring cat food into my washing machine instead of detergent. I felt like I had lead weights on both my legs, and I just wanted to crawl back into my bed. In the end, the recital was a success, and both my girls looked beautiful, but I still felt exhausted, depressed and nauseous. In general, I have just enough energy to make it through my workday. Then everything else pretty much falls apart.

I had my blood drawn on Monday, half wondering if I was just going crazy, and half knowing I needed more thyroid hormone. Luckily, my TSH finally reflects how I feel, so I had no problem getting a bump to 150 mcg of Synthroid. I am so happy that my OB-GYN’s office is so responsive and understanding. Still, I am concerned about having an elevated TSH for any period of time during my pregnancy. Did it affect the baby? Is everything okay?

I am channeling my all of my out-of control feelings into tracking my bloodwork and hormone dosing. Those who know me will appreciate how I can find PowerPoint to be comforting! However, I do think it’s a good idea for hypothyroid pregnant moms like me to take control of their healthcare and know their numbers. If you use Quest Diagnostics labs, I highly recommend their Gazelle app to get copies of lab reports. I can access lab results from any time period right from my phone, and email or fax them directly to my healthcare provider. You can download it here.

Gazelle

Want to know how my thyroid labs compare to last year at this time? I have it all right on my iPhone.

And if you still feel the need for additional control organization, here’s how I am tracking my thyroid activity during my pregnancy.

pregnancy thyroid

Check out how my TSH has jumped up! Overall, my FT4 and FT3 have dropped slightly, but have been stable enough to make me feel a little better about the risk to the baby.

I am scheduled for my ultrasound in 3 weeks, and I am really looking forward to seeing the baby with my own eyes. I am praying I will finally be able to enjoy this pregnancy instead of feeling like a science experiment!

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Thyroidless and Pregnant

30 May

photo (7)I’m pregnant.

There, I said it. I don’t know why I am having such a hard time telling people. Maybe I am afraid it’s somehow not true. Or that something terrible is going to happen as soon as I go public. Or maybe it’s just an awkward conversation to have. Whatever it is, I am finally putting it out there. I am 13 weeks pregnant and I don’t have a thyroid.

Everywhere you look, doctors are warning about the dangers of hypothyroidism during pregnancy. I assumed losing my thyroid meant losing my ability to have more children. After I was diagnosed with thyroid cancer, I was devastated every time I saw a pregnant woman. I even blogged about it. I didn’t know what was wrong with me, because I didn’t think I even wanted another baby. Did I?

Shortly after my diagnosis, I went to my aunt and uncle’s church to pray for success with my upcoming thyroidectomy. The pastor’s message was all about Faith and Grace. He talked about infertility and the gift of his own daughter (aptly named Faith), who was finally born after years of trying. Again, I became overwhelmed with grief. When the service was over and it was time to pray about my surgery, all I could blubber about was the loss of a baby that I didn’t even know I wanted. We all prayed together…heal me from thyroid cancer and give me the chance to be a mother again. Two years later, I have that chance.

My pregnancy is a direct answer to my prayers. It’s one of the most obvious blessings God has ever bestowed on me…like He’s making up for the struggle that thyroid cancer has been for me. My husband and I are happy and grateful. Yet from the day I took my positive pregnancy test, I have had my boxing gloves on.  It’s time to fight again. Look out, doctors, because now I am fighting for two.

The day I found out I was pregnant, I called U of M. The nurse gave me her protocol answer: “Get off Cytomel, increase Synthroid by 20%”

They didn’t even want to check my levels. So I asked for bloodwork. They sent me a slip for TSH and Free T4. “No Free T3?” I asked. “How can you know if I need to get off Cytomel, which is my T3 replacement, if you aren’t even going to look at how much is in my system?” I started having nightmares about my T3 plummeting and leaving me and my baby at risk for complications and unnecessary fatigue. I pushed and pleaded, all which was met with loud sighs and exasperation.

They did finally check all three numbers – TSH, Free T4 and Free T3. All hadn’t budged from my last round of pre-pregnancy  bloodwork. So I asked, why would I just ditch my Cytomel and increase my Synthroid? The nurse – someone who has an R.N. degree and works exclusively for a specialist who manages thyroid cancer patients, said, “Your TSH is too low. You need more Synthroid.”

The exact opposite is true.

To make matters worse, my endocrinologist didn’t even want to talk to me directly or see me in her office. The whole experience gave me anxiety. I took my chances and asked my OB-GYN (whom I’ve known for 9 years, and trust) to manage my thyroid meds during my pregnancy. He agreed – I could stay on my small dose of Cytomel, we would check my levels every 2 weeks until we started to see a decline, and then we would adjust my Synthroid. He didn’t even care about my TSH – he said he would focus on how I felt, and my Free T4 and Free T3. He is a very rare find in the world of medicine, and I am grateful. At about week 8, I started to feel unusually exhausted, I gained 4 pounds in two days, and my hair had a weird texture. Sure enough, my TSH had risen from 0.03 to 1.1, my Free T4 had fallen from 1.3 to 1.0, and my Free T3 had fallen from 3.1 to only 2.3. These numbers are well within normal limits, but I know my own “normal.” And in the first trimester, the baby’s needs for thyroid hormone are critical. I called my OB’s office and asked for a medication change. Since he was on vacation, I had to deal with another doctor in his practice…someone I have also known for several years and is one of the most respected in my local community. His response?

“You’re normal. We aren’t going to increase your medication until you are below normal.”

So, the treatment strategy from one of the most respected OB-GYNs in my city is to wait until his pregnant patients have OVERTLY swung into hypothyroidism, and then risk the 4-6 week time period where the baby’s hormone needs are growing, but the extra medication has not yet become fully bioavailable in the mother’s body?

WOW.

Luckily, my OB returned a few short days later and happily increased my Synthroid from 125 mcg to 137 mcg. I am feeling normal again, and lost the random 4 pounds I had gained. At week 13, I have gained a net 3 pounds, I feel good, and even ran a 5K.

photo (8)

Not breaking any speed records, but still running (and kicking) at 11 weeks!

So maybe I won’t have to fight too hard after all. But I will stay vigilant. There is a movement happening, and thyroid patients are advocating for change. I am happy to be a part of it! In the meantime, it’s up to us to fight for ourselves and for our babies.

I’ll keep you posted. I fully intend to be a success story.

My 13 week bump

My 13-week miracle bump

Generic – It’s NOT the “same thing!”

10 Jan

Many months ago, I posted about my stance on generic medications. Today I read a fabulous article from Fortune magazine that supports my experience with branded medications versus their generic counterparts.

My favorite excerpt:

But generic drugs diverge from the originals far more than most of us believe. For starters, it’s not as if the maker of the original pharmaceutical hands over its manufacturing blueprint when its patent runs out or is challenged. The patent reveals the components, but it doesn’t explain how to make the drug. In reality, manufacturing a generic requires reverse engineering, and the result is an approximation rather than a duplicate of the original.

The FDA’s rules effectively acknowledge that. The agency’s definition of bioequivalence is surprisingly broad: A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.

There are other differences. The generic must contain the same active ingredient as the original. But the additional ingredients, known as excipients, can be different and are often of lower quality. Those differences can affect what’s called bioavailability — the amount of drug that could potentially be absorbed into the bloodstream. As the American Heart Association recently noted, “Some additives traditionally thought to be inert, such as alcohol sugars, cyclodextrans, and polysorbate-80, may alter a drug’s dissolution, thereby impacting its bioavailability.”

Full article  here.

Fellow thyroid patients – are you feeling poorly on your generic hormone replacement drug? Sometimes the extra copay is a good investment to make.

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

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

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.

525,600 Minutes

11 Aug

Today marks one year since I lost my thyroid, and my cancer. 365 days. 525,500 minutes. How do you measure a thyroidless year?

Before my surgery, I was terrified of gaining 50+ pounds. I was already struggling with reduced energy, and I thought I would become non-functioning. I was afraid I would have a terrible, ugly scar. I thought I was saying goodbye to my fertility. I was worried that my voice would never sound the same. I didn’t want to end up with breathing problems that would prevent me from running. Deep down, I thought they might open me up and find more cancer. I prayed my personality wouldn’t change and I wouldn’t end up with chronic depression. I thought I wouldn’t be a good mother anymore. I thought my marriage might suffer. I was worried about my career. I thought saying goodbye to my thyroid meant saying goodbye to life as I knew it.

I thought I would never be the same. I was right.

My surgery was a piece of cake. The best decision I could have made was choosing an endocrine surgeon who does thyroids all day long. You literally have to squint to see my scar. No complications. No surprises either; he took the cancer out, and it hasn’t spread or returned. My voice sounds exactly the same. I can still sing to Mary before bed, and I can still hold private radio concerts in my car. Just last week, I got to see Coldplay, singing my cancer anthem, up close and personal. No one at the Palace of Auburn Hills was screaming louder than I was.

My surgery was so non-eventful, that I interviewed for a new job just 10 DAYS after my thyroidectomy (wearing a necklace to hide my fresh incision). Despite all odds, they hired me, and I have never been happier in my career. I’m doing something I love, and working with fantastic people.

I can still run. In fact, in May, I ran a 5K a full minute faster than I did before my surgery. My daughters don’t think any differently of me…they still like to run around outside and get really sweaty…”to look like Mom after Zumba.”

Having cancer actually made me slow down and appreciate my beautiful family even more than I did before. It forced me, the ultimate caretaker, to let someone else take care of me. There were times this year when I was overwhelmed by how much I am loved. I don’t think I would have been able to experience that without really letting my husband take the wheel. And if we decide we want to have another baby, we can. At my one-year appointment, my endocrinologist gave that choice back to me.

Over the last year, I’ve struggled to feel like myself. There have been days where I’ve slept 12 hours and still wanted a nap. I take four different vitamin supplements a day to make up for the deficiencies my thyroid left behind. And I can’t lose weight to save my life. One year later, I am 12 pounds heavier, and 25 pounds more than “normal.” I’ve tried to accept it, but I can’t. So I will keep fighting, playing around with my medication, counting calories and exercising. In the meantime, I am actually learning to be happy in my life without being happy with my weight.

So how do you measure a thyroidless year? When I measure the joy in my life against my pain, I came out ahead. I am winning the war. I am surviving. There is light at the end of this tunnel, and I know I will achieve “normal” someday. Maybe next year.

To quote Chris Martin, “You can hurt…hurt me bad. But still I raise the flag.”

I ran two 5Ks this year, and followed up one with a 2K run with Ellie.

Andy and me before the Coldplay concert in August 2012. No scars visible.