In this post, Katie, a woman who has Turner Syndrome (TS), talks about her experience with growth hormone and estrogen therapies. Her experience may not be the same as that of others, but may shed some light on the treatments which are common for patients who have TS.
My name is Katie, and I was born in August 1981. When I was born, I weighed seven pounds and three ounces. As soon as I was born, the doctors knew something was not right, since I had very swollen hands and feet (lymphodema). They ran a bunch of tests one me to figure out what was wrong, thinking that it was my heart or lungs. Unfortunately (or perhaps fortunately), all of the tests came back normal. When I was about two weeks old, the doctors sent my bloodwork to the Centers for Disease Control (CDC) to see if they could help figure out what was going on. My test came back as positive for Turner Syndrome. By three months old, my parents started taking me to a pediatric endocrinology clinic at Buffalo Children’s Hospital, where I went every three months until I was 16 years old.
Growth Hormone Therapy
My experience with hormone therapy started at the age of seven, when I started growth hormone therapy (GHT). Of course, I was scared and did not like it. Honestly, I didn’t really have a choice regarding getting the injections. But my parents made the decision because they believed it was in my best interest. Some days I cried and yelled when they gave me the injections; sometimes it hurt! But I knew the shots were helping me grow, and I definitely loved that. I was happy every time I went to the clinic and they told how much I had grown since my last visit.
As I got older, my daily injections got much easier because I took more control of them. I started by choosing and cleaning the spot for my injections, which made for less pain and fewer tears. I eventually took over and started giving myself the injections.
Transition to Estrogen Replacement Therapy
At the age of 15, I switched to estrogen replacement therapy (ERT), and eventually my doctor added progesterone. I remained on the estrogen and progesterone until I was 30 years old; then I switched to an oral birth control medication for my hormone replacement. This is because I all of a sudden starting to get horrible cramping, which hadn’t really happened in the past 15 years. I started seeing a reproductive endocrinologist and they suggested switching to birth control to see if it would help.
We haven’t made plans for my future with hormone therapy, but I plan on discussing this with my endocrinologist soon.
See the TSF website for more information about hormone replacement therapy and growth hormone therapy specifically.
By the way, did you notice Katie’s t-shirt? This “Be Brave, Be Strong, Be You” shirt and many other #TurnerSyndromePride items are now available in our shop!