Tag Archives: Treatment

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

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Cancer-Free…I Guess.

19 Jul

Today was a very, very long day at U of M. I was really hoping to announce “100% CANCER-FREE!” after my scan. Instead, what I can say is: nothing overtly bad showed up on my scan, and it’s up to me if I want to do any further treatment.

Let me explain…

When most people have papillary thyroid cancer, they follow the protocol below:

  • Total thyroidectomy
  • Medication withdrawl and low-iodine diet
  • Radioactive Iodine Ablation (RAI) for any remnant thyroid tissue (normal or cancerous..it all gets destroyed)
  • Follow-up whole-body scans to look for iodine uptake. Since all thyroid tissue should have been ablated with the RAI treatment, any uptake would be deemed “bad.” No uptake would get a gold “cancer-free” star.

Well, naturally, when I was diagnosed, I weighed all my options and I was not satisfied with the risks associated with the average protocol. I based my decision on the American Thyroid Association Guidelines for Thyroid Cancer Treatment. So my protocol looked like this:

  • Total thyroidectomy
  • Very long wait for Thyrogen injections so I didn’t have to endure medication withdrawl
  • Low-iodine diet and whole body scan
  • Follow up with ultrasound and bloodwork

Today, I had three total scans. The first two were 20 minutes each. I went in feet first, and I wasn’t restrained. I popped two Xanax, focused on my music and I was fine. Afterwards, I met with Dr. W, the nuclear medicine doctor. He said he was concerned about the level of iodine uptake he saw on the first scans, and he wanted me to do 3D image followed by a CT scan. He made it clear that he thought I should have done RAI in the first place.

Hysteria ensued.

I really couldn’t hold myself together. I became irate. I couldn’t stop crying. After waiting for another full hour, I got back on the scan table. This time, they had to restrain me and strap me in. I was told I was not allowed to move. Tears were streaming down my face and I felt like I couldn’t breathe, so I popped another Xanax. I sound like a drug addict, I know…but look at what they did to me! You would need prescription-grade relaxation too!

The nurse acted like I was crazy for needing my iPod. I am so glad I ignored her. I desperately needed it to cope!

After 40 minutes in this God-awful contraption, I got additional information. Dr. W said the iodine uptake was probably normal remnant thyroid tissue that my surgeon left behind. This happens frequently and is nothing to worry about. There was nothing abnormal in my lymph nodes, lungs or liver (where thyroid cancer frequently spreads). However, since he is a nuclear medicine doctor, he thinks I should just do RAI to ablate all the remnant thyroid tissue, whether it is normal or not. This would in no way improve my outcomes, and would not even guarantee that I wouldn’t have a recurrence. But it sure would make the nuclear medicine doctors’ diagnostic job a lot easier.

Dr. W acknowledged that there is good data on both sides of the RAI decision, and left it for me to discuss with my Endo, Dr. E, next week.

So what can I tell you? I have no bad news. And that, my friends, is good news.

Now, I’m off to eat dinner. I have a serious cheese deficit to make up for.