Monday, May 30, 2016

What Everyone Should Know About Graves' Disease

When my second son was about eight months old I felt like I was coming down with the flu.  Normally I could run five km's and suddenly I could barely walk one block– my muscles were weak and sore.  The symptoms progressed quickly: elevated heart rate, insomnia, hair loss, brittle nails, massive hunger, diarrhea, hand tremors, and sweating.  I was losing weight rapidly (close to 20 lbs in three weeks) despite eating numerous meals each day and snacking throughout the night.  Some people suggested I had anxiety and it did feel like it but I knew it was something more.

I felt terrible and within two weeks I finally had a blood test that confirmed that I was in a hyperthyroid state and my T4 was not even really existent.  Although they were not sure if it was Postpartum Thyroiditis or Graves' Disease, they started treating it with PTU which is an anti-thyroid medication that was safe with breastfeeding.  I was also given beta blockers to help my heart rate come down–oh, how I loved the beta blockers.  I finally felt like I could relax for a little bit as my resting heart rate had been over 100 for weeks!

How Graves' Disease Affects Your Thyroid
Respect the thyroid!

I was later diagnosed with Graves' Disease.  What caused this autoimmune disease resulting in an overactive thryoid? There isn't a real known reason why this occurs but some risk factors are that I'm a female under the age of 40 and had recently had a baby (pregnancy and childbirth are factors).  Another is that I had lost my mom a few years earlier and was going through an emotionally stressful time with my dad's remarriage. It is estimated that 3% of females will develop it in their lifetime whereas only 0.5% of men will.

I was unable to return to work as a teacher and it took just over a year to steady my thyroid enough to get off of my medication.  During that time, I had to have my medication re-adjusted as my body responded too strongly to it and I ended up having major chest spasms and sensitive eyes–I couldn't even watch TV without sunglasses.  The months where my body was attacked by my thyroid did such a number on me that it took a very long time for it to recover; it was as full year before I felt like myself again.

{I spent a lot of my time resting on the couch}

When we were going to have a third child I knew the chances of a relapse were high and I did five months after she was born.  Thankfully we caught it right away and my body was able to adjust much faster this time around.  I went back on medication and was able to get to remission once again.

To those that are going through it, my recommendations would be:

1.  Listen to your body.  If something doesn't feel right, it's not.  If you have been diagnosed, get frequent blood tests to confirm that the medication you are taking is the correct dosage for how your thyroid is currently doing – I wish I had done this sooner.  Take it seriously because you only have one body and the longer that body is damaged by something like Graves' Disease the longer it takes to heal.

2.  Reduce stress in your life.  I know there are some things we don't have control over the but for the things we do, make the changes you need to.  I had to take the giant risk of not returning to work. I had to start saying "no" more.

My story is not unique here is another story from my friend Laura, aged 29.

"I was at my family doctor in 2011 and mentioned my elevated heart rate, it turns out my thyroid hormones were very high and blood tests showed the presence of an anti-thyroid antibody.  After more tests, I was referred to an endocrinologist who diagnosed me with Graves’ Disease and prescribed anti-thyroid medication.  At the time, my resting heart rate hovered around 110 bpm.  I was having difficulty falling asleep at night and was perpetually exhausted.  Even though I was eating more than my husband, I was losing weight and I constantly felt jittery.  Doing everyday activities such as grocery shopping completely wiped me out and I spent many hours lying on the couch.

After being on anti-thyroid meds for 10 months my specialist was confident that my thyroid was behaving and I slowly weaned myself off of the medication.  Unfortunately, remission only lasted 5 months before I recognized the all to familiar symptoms again.  It was now spring of 2013.  This time, the blood test results showed even higher thyroid hormones than they had previously been.  It was back onto the anti-thyroid meds for me.  This time I stayed on the anti-thyroid meds for over 18 months and during this time I lost my mother-in-law to cancer and worked through my mom’s own cancer diagnosis.

Due to the fact that many autoimmune diseases are made worse by stress I decided to go monthly to both physiotherapy and massage therapy to try and relieve the emotional and physical stress that had built up in my body.  By October 2014 my endocrinologist was confident that my body had learned what to do.  I once again weaned myself off of the anti-thyroid medication and hoped for a better result than last time.

Fortunately, it has been over a year and a half and I haven’t touched any anti-thyroid medication in that time.  The biggest thing for me has been stepping back when I need to and managing my stress.  I still go to regular massage therapy to manage the tension that builds up in my body and I can feel when I am getting overwhelmed.  I am currently less than two months from the due date of our first child and all of my blood tests throughout my pregnancy have shown that my thyroid has been doing exactly what it is supposed to do.  However, the chances of a relapse postpartum are high.  I plan on watching out for any symptoms and dealing with those as soon as they are noticed.  Here’s to hoping that my body has learned what to do and what not to do and that my thyroid will continue to work as it should."–Laura

***
Thank you for reading. I share this to let others know about the symptoms in case they ever feel them or recognize them in those they love.  Also, I share this for hope because that is what your loved one (or you!) will need if they are diagnosed.

Love,
Louise

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6 comments:

  1. I had never heard of Graves' Disease until an acquaintance from church got it - that was many years ago now. I don't know what all her symptoms were, but the one that was visible to others was how it affected her eyes. So glad you have been able to control this disease and be in remission for so long.

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    1. Yes, my eyes were so sensitive too. There is something called Graves' Eye Disease as well.

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  2. I am glad you are doing so much better - thyroids are tricky!!! Cute hair, by the way:)

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    1. There are so tricky as you know!

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  3. I was diagnosed with overactive thyroid post pregnancy. I had lost 10lbs in one month and plunged well below my pre pregnancy weight. I saw an endocrinologist and she ran some tests. My blood work eventually came back normal but the other test she had me too came back with a Graves diagnosis. I had never heard of Graves disease before I experienced thyroid issues.

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    1. Nicole, it's amazing how quickly the weight comes off...such an indicator that something is going wrong! I hope you are feeling much better now, thyroids are tricky.

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