Medical Stories - Acromegaly: Lauren's Story

Ajouté : 2026-05-30

[00:00:00]He said drive to the emergency room.

[00:00:03][music] I really thought it was a death sentence. You know, I had a newborn baby and a toddler [music] at the time.

[00:00:10]>> It was like the world came crashing down.

[00:00:12]>> Acromegaly is the disease as a result of too much growth hormone production.

[00:00:17]>> One of the big side effects is bone growth and so my fingers, my feet, my rib cage, and my forehead have all grown. Don't go down the Google wormhole and know that it's not a death sentence.

[00:00:28]You can still live a very [music] fulfilling life.

[00:00:48]>> Do you see any duckies, Payton?

[00:00:50]>> But they're beautiful, aren't they?

[00:00:54]I'm 37 years old. I live in Easley, South Carolina.

[00:00:58]>> [music] >> I'm a lower elementary Montessori teacher. I've been married to my husband, Ryan, for will be 12 years this June and we have two beautiful little girls. Elena is eight and [music] Payton is three. We love to go downtown, walk around with the girls. It's just a really beautiful place to hang out as a family.

[00:01:19]>> Lauren is quite literally the most amazing and strongest person I know.

[00:01:24]She is a fantastic mother, an amazing wife, and my best friend in the whole world.

[00:01:33]>> So, I was pregnant in 2016 with my oldest daughter and I developed gestational diabetes, um which was kind of a shock at the time. Otherwise, it was a very healthy pregnancy.

[00:01:45]>> After she gave birth to Elena, um it seemed like everything was going well again. We weren't really sure that there was anything else going on.

[00:01:56]>> I was able to come off all of my gestational diabetes medications, and then I got pregnant a few years later in 2021 with my daughter Peyton. During this time, my ring size definitely increased.

[00:02:09]My feet were getting bigger, um more sweating, a lot of fatigue, acne, um oily skin, [music] skin tags, and the doctors just kind of kept saying, "Oh, well, you're pregnant. Your feet get bigger when you're pregnant. Your ring size gets bigger when you're pregnant." And so, a lot of the symptoms just kind of kept getting pushed off as normal.

[00:02:34]>> My name is Lauren, and I have acromegaly.

[00:02:38]>> Acromegaly is a disease as a result of too much growth hormone production, and which is usually because there's a presence of a pituitary tumor.

[00:02:47]>> [music] >> Pituitary gland actually is a teeny tiny gland situated on the bottom of the brain. The front part of it produce six different hormones, and one of them is growth hormone.

[00:02:56]Patient with too much of those hormones experience many complications. For example, they have enlarged hands [music] and feet, enlarged tongues, they have sleep apnea, and they have high risk of developing diabetes, high blood pressure, high cholesterol, and even malignancies. People tend to have headaches, and sometimes people can have vision changes.

[00:03:22]>> I originally went to the doctor when my oldest child was about 2 and 1/2 3 years old because I had all this weight gain, all this inflammation. It just I [music] couldn't lose the weight, so they checked my thyroid levels. All of that was fine. He did the blood work again, and my A1C [music] was over 9 and 1/2. My triglycerides were in the 4,000s, >> [music] >> and he said, "You need to drive to the emergency room right now. You're in diabetic ketoacidosis."

[00:03:51]And this was a complete shock to me.

[00:04:02]I was in ICU for a couple days.

[00:04:04]>> [music] >> And during that time, the doctor at the hospital, he was just very, very harsh with me and was like, "Cut out all carbohydrates, cut out all sugar. You need to exercise more."

[00:04:16]I really felt like I was doing, you know, the best I could at the time, but my body just wasn't responding the way it was supposed to.

[00:04:32]My new endocrinologist, he felt like something else was going on. And so, he started running a ton of blood tests, um seeing if maybe I had type 1 diabetes or a subset of type 1 diabetes. And all those tests kept coming back negative.

[00:04:47]And so, then he ran a growth hormone test and IGF-1 [music] test, and those came back really elevated. Um but since I was pregnant, he said my growth hormone might be elevated due to the pregnancy.

[00:05:08]After I gave birth, my endocrinologist ran the growth hormone and IGF-1 test again, and those numbers came back even higher.

[00:05:16]>> We mainly use IGF-1 level to make the diagnosis, especially uh when the patient have typical signs and symptoms of acromegaly.

[00:05:24]>> In July 2021, I had my MRI of my pituitary gland, and it revealed that I had a macroadenoma on my pituitary.

[00:05:40]>> When the doctor told us, it was like the world came crashing down.

[00:05:44]>> I really thought it was a death sentence. [music] You know, I had a newborn baby and a toddler at the time and it kind [music] of felt like the world was crumbling.

[00:05:54]>> Clearly, she has had acromegaly for years. According to a most recent data, the delayed diagnosis though carries a higher risk of morbidity.

[00:06:04]If left untreated, the patient may have heart failure, very severe sleep apnea, lung disease, malignancy, diabetes, high blood pressure, high cholesterol, obesity.

[00:06:15]>> One of the big side effects of acromegaly is bone growth and so my fingers, my feet, my rib cage, and my forehead have all grown.

[00:06:24]>> Looking back on previous pictures, it is a vast difference compared to when we first met in college.

[00:06:33]>> My fingers and my feet have both gone grown about 2 and 1/2 sizes. My wedding ring doesn't fit anymore. I've had to buy all new shoes.

[00:06:42]Um you know, shoe shopping is kind of a nightmare. I have to you know, get size 10 and 1/2 wide or size 11 which, you know, for females there's not really cute options at those sizes.

[00:06:52]>> And unfortunately, acromegaly does feel a lot of burdens on the patient and their family members and loved ones.

[00:06:58]Number one is the disease burden, what disease does to the patient. There is also social burdens because those patient also have dysmorphic features.

[00:07:07]That's, you know, sometimes make them regress and doesn't want to engage in social interaction.

[00:07:12]There is also psychological and mental component of it because the disease itself can cause depression and anxiety. And then, the last one is the financial burden.

[00:07:24]Where you got to pay for the medical visits, the doctors, the MRIs, the medications, and maybe even also treatment for the comorbidities.

[00:07:31]>> Through my Google searches, I found many different treatment options, but the number one treatment recommendation is pituitary surgery.

[00:07:52]>> And the third-line therapy include radiation when patient not responding to the medical therapy or it recurs.

[00:07:58]>> The surgery went really well, but the the surgeon let us know that he couldn't get all of the the tumor because it was wrapped around her carotid artery, but he got most of it.

[00:08:10]It wasn't an immediate recovery, but you could see um signs that she was starting to feel better.

[00:08:19]>> For those who are already in remission, we will ask the patient to come back every 3 [music] or 6 month.

[00:08:31]>> I did not have to do any [music] medication or anything. And so, in 2023 when I had the MRI and learned that the tumor was starting to grow back was devastating.

[00:08:44]I kind of felt just back at square one.

[00:08:48]>> That was a gut punch, and that's when she needed to start doing her monthly injections to to a kind of mitigate the growth of the tumor and her IGF-1 levels.

[00:09:00]>> And after a couple of months, my growth hormone and IGF-1 numbers were [music] not going back down.

[00:09:14]These tumors typically respond well to a different medication which hits more receptors in the brain. And so, my doctor switched me to this monthly injection.

[00:09:31]>> So, the second-generation SSAs can be used in those patient with acromegaly who did not respond to the first generation as I said by the clinical study, somewhere between 15 to 20% patient who are not controlled by the first generation will respond to the second generation.

[00:09:48]>> Now, since my IGF-1 and my growth hormone are both in range, my rib cage and everything is not currently growing, but if it were to get out of range, then that would be a possibility again.

[00:10:03]>> I know that she carries a lot of stress, and so both of us we we go through that together. We carry that burden together.

[00:10:11]>> So, my husband Ryan, he's just wonderful and supportive and loving and has been to many doctor's appointments with me.

[00:10:19]Um, you know, he's kind of the the calm to my anxiety. Then he's like always reassures me it's going to be okay, and if something were to come up, we'll we'll work through it together.

[00:10:30]So, I got the opportunity to go to Phoenix, Arizona to go to a um international acromegaly conference, and it was just such a wonderful positive experience getting to meet other people like me, other people who have been through the same experience.

[00:10:47]>> So, the acromegaly community, there're different support groups. So, you actually you don't feel alone. They exchange ideas, even exchange information of their physicians so they can have help.

[00:10:57]>> The fact that she's found people that are going through the exact same thing that she's going through um has just been truly amazing for her um to have that sounding board, but also she's able to help others that are newly diagnosed and dropping different piece of knowledge that she's gained along the way as well.

[00:11:17]>> My doctor is really keeping a close watch on me. My medication is working.

[00:11:23]My family is wonderful and supportive, and the whole acromegaly community that I'm a part of has been [music] is really uplifting and empowering. I'm able to run around with my kids. I'm able to teach all day. I just overall feel very healthy.

[00:11:39]>> She has a lot more energy to where she's able to work out. She has a lot more energy to where we're able to hang out as a family.

[00:11:47]>> You love heights, don't you?

[00:11:48]>> Oh my I want patients to know that even though acromegaly is a rare disease and even though there are challenges in diagnosing and treatment, there are new therapy that either was just approved by the FDA or they're being considered for approval by the FDA.

[00:12:03]>> Don't go down the Google wormhole and know that it's not a death sentence.

[00:12:08]There's more doctor's appointments and blood labs and things that you have to do, but you can still live a very fulfilling full life.