my life with grave's disease

Monday, February 18, 2013

Six months after the birth of our first daughter (2010) I was diagnosed with Grave's Disease which is a form of hyperthyroidism.

Right after her birth I started to suffer from symptoms I had no clue were related to Grave's Disease. I discussed certain symptoms with my OB/GYN and most of them were written off at post partum symptoms which individually they can be but as a whole they were pointing to something she completely missed.

Here is just a list of the things that was going on that I had no clue connected to each other: I had a difficult time with let down for my milk for my newborn, I was unable to get off the floor without assistance, it was very difficult to climb stairs all of a sudden, my heart raced at 120 beats a minute 24/7, I had insomnia, my hair was falling out in huge abnormal quantities, I was constantly hot, I experienced hand tremors and my anxiety was through the roof.

Now collectively as a whole this sounds really bad right? Well they didn't all hit me simultaneously, it was very weird. I experienced them like a domino affect I had one issue then gained the next, then gained another, then lost one and gained another, then gained another and you get the idea. Alot of these can be related to post partum from the anxiety, hair falling out, being hot etc. Your hormones are still all over the place so I just dealt with it telling myself that in a couple of months it would be over.

At around the 5-6th month mark is when my heart started to maintain itself at over 100 beats per minute at all hours of the day. And for those who have never experienced this feeling outside of doing some kind of physical activity it feels like you just ran a mile but you are actually laying in bed. Not fun. I didn't understand what that was about. It wasn't until I had a 2 week stretch of insomnia, no sleep at all on top of working, I began to feel like I was losing my mind. So I finally brought myself into urgent care. And to this day I thank everything there is to thank in this world that that doctor listened to me. He took down all of things that was plaguing me and told me he was going to run a blood panel just to be on the safe side.

Two days later I received a call from him saying I needed to find an Endocrinologist, like yesterday. He informed me that I had an extreme case of hyperthyroidism. Off the charts extreme (normal range for your T4 is 4.5 - 12.5, mine was 464.0) and my heart could only handle it so long. I scheduled an appointment within the week. In the meantime I began my research and man-o-man I had nearly every symptom of hyperthyroidism so much in fact that it was actually pointing me to having Grave's Disease. I hoped that it wasn't the case. That week at my Endo appt is when my Endo confirmed I had hyperthyroidism and officially diagnosed me with Grave's Disease. My heart sank, how could these be? My doctor pointed out my goiter which is how I was seriously? So my doctor is examining my neck with his hands, the exam room door is open, mind you, when he says "Oh ya, that's a big one". Of course someone would HAVE to be walking by when he says this. How embarassing, right? Just wait. After the initial embarassing display he goes and gets a student from another room and says "Fell this! You probably won't encounter another this size". Where is the hole I can climb into?!

To give you an idea of what Grave's is:

Graves’ disease is triggered by some process in the body’s immune system, which normally protects us from foreign invaders such as bacteria and viruses. The immune system destroys foreign invaders
with substances called antibodies produced by blood cells known as lymphocytes. Some people inherit an immune system that can cause problems.Their lymphocytes make antibodies against their own tissues that stimulate or damage them. In Graves’ disease, antibodies bind to the surface of thyroid cells and stimulate those cells to overproduce thyroid hormones. This results in an overactive thyroid. (

There is no cure for Grave's disease however there a couple of treatment options to control the hyperthyroidism including medication (there are only 2), radiation or surgery (thyroid removal). All have their own sets of risks. With my doctor we chose to start off with medication to regulate my hyperthyroidism. Starting off with medication #1 (Methimazole) I was allergic to, so with one medication left I was facing surgery or radiation. The 2nd medication (PTU - Propylthiouracil) worked and didn't work. It did lower my numbers however I would have jumps during treatment that my doctor was not happy with. Not to mention one of the side effects of this wonderful medication is weight gain...the average per patient - 30lbs. My gain? 30lbs! Grrrrrrr. So because I wasn't making a good enough change in my numbers on PTU I was facing a round of radiation which included being in quarantine for 72 hours and unable to be near my daughter or anyone taking care of her for 10days. Everything I touched during the treatment time would require being sterilized yadda. Lets just say I wasn't looking forward to this. As luck would finally have it the morning of my radiation treatment my doctor informed me my numbers improved enough to not have to go through radiation....yyahhhhooo!

Today (2013) I am officially in remission and off meds for my hyperthyroidism which is wonderful but I still live with Grave's Disease and the effects that PTU did on my body. I have learned to live with this which has been a new experience including my inability to take OTC cold/flu medication. Prior to this I never even saw that medications state to consult a doctor if you have any form of thyroid problems. Things you overlook before it affects you.

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