I have decided I want to share my story of when I was diagnosed with hyperthyroidism and Graves' disease with ophthalmopathy. I just want to convey my story as a cautionary tale and I hope that anyone who will read this and know what to look for so you don't end up like me.
Alrighty so I gave birth to my darling daughter Joslyn summer 2011 shorty after I dropped all my pregnancy weight plus some extra I was just an itty bitty thing and quite honestly I wasn't mad about it even a little bit. however losing all that weight was strangely easy I wasn't working out at all. In fact when I would walk up a flight of stairs or tell a particularly long winded story (like this one) I would be so out breath and my heart would be pounding so hard I would have to sit down. I never had any energy and I was starving at all times. I honestly just thought I was out of shape I was embarrassed so I never mentioned it to anyone, other than my mom.
Fast forward to summer of 2012 I find out I'm pregnant with my second daughter Kate. Pregnancy precedes as normal. I still feel out of shape but my heart races even more than it used to sometimes I would feel it sputter then it would start pounding so hard it would make me cough I now know those fun little episodes as heart palpitations. I would have high blood pressure on occasion at my check ups but I guess they weren't worried about it. I cant believe I still told myself nothing was wrong I'm such an idiot! My belly always measured a few weeks smaller than I was. though that raised no red flags at the doctors office. My mom was always commenting on how small and how low my belly was but I was being delusional thinking I was so lucky that I wasn't getting very big. even though I was much bigger with my first daughter. 
Luckily the next day I had my 35 week check up so while I was there I asked my doctor to do a blood test to check my thyroid because of the events that happened over the weekend. He scoffed at the idea and thought I had a crazy hypochondriac Mom. He did the test to appease me. To no surprise he called me a few hours later telling me that my blood work did indicate that I had hyperthyroidism and that he had already made me appointments to see a high risk pregnancy specialist and an endocrinologist. At this point my family and I were furious that my non doctor cousin was better at diagnosing diseases than the man that I had trusted for my entire pregnancy to look after and care for my sweet innocent baby, not to mention that he was in my ward so I thought maybe he would care a smidgen about me. Not to worry though he gets worse just you wait! So I get into the high risk pregnancy specialist and they do their magic and tell me my little babe is extremely small only measuring 4lbs 4oz and that her umbilical chord is having to work extra hard to get her any nutrients and her placenta is starting to calcify Which means it was starting to die. She had very little amniotic fluid cause her kidneys werent functioning 100% they told me that I would have to start doing stress tests twice a week and if she showed signs of stress they would induce me on the spot and if that hadn't happened by the time I was 37 weeks they were inducing me anyway. Well isn't that terrifying news! That was a Tuesday and I was scheduled for another stress test on Friday we were planning on heading out to Saint George with my husbands family for Easter right after my appointment. Psht... That never happened.
Left: 26 weeks with my first pregnancy
Right: 26 weeks pregnant with second pregnancy.
DIAGNOSIS
As I'm nearing the end of my pregnancy I'm 35 weeks. My mom and I attend a baby shower for my cousins wife. I am so so so thankful that we did! Here's why. I ran into my cousin Misty who is a dental hygienist and who I haven't seen for like 4 years. She was at this baby shower and we talked and I notice she kept staring at me like she is examining me. Later I find out she texted my mom after the shower saying that she hardly recognized me when she saw me and she didn't want to hurt my feelings by talking to me directly. She explained to my mom that she learned about this disease where people lose a bunch of weight and your eyes start to bulge and get blood shot and glossy and she thought I looked like I had it. she was worried about it might be doing to my unborn baby so she urged my mom to talk to me about it. That night my Mom stayed over at my house cause she lives in Manti and had already planned to stay with us for the weekend. She didn't sleep at all that night she stayed up googling the crap out of graves disease and when we woke up the next morning she sat me down to talk to me about it and was trying her best not to upset me. I'm thinking if you think I have a disease I would like you to share that information with me. why on earth would I be upset? She read the list of symptoms to me and I had every single one of them. Hyperthyroidism is an auto immune disease. Something in your brain decides that your thyroid is a foreign body and tries to shut it down. In turn the thyroid goes into defense mode and shoots out tons of hormones, which have adverse effects on your body. Remember Marty Feldman? He had Graves' disease. Could they not think of a worse name for this disease? Graves? It's the worst! 
Last but not least here's the goiter! Super attractive!
YOU'RE HAVING A BABY TODAY
They start my ultra sound by measuring my amniotic fluid but the nurse had a hard time finding any. I had been having contraction on and off for a while. I had a lot of false labor with my first daughter so I didn't think much of it. They did a super fun test on me and found out my water had indeed broken but I had so little to begin with I didn't realize. I just thought that when your water breaks it's like a big pipe bursting! Not always the case my friends They told me to sit tight cause I was having a baby today.
I got my epidural and got started on pitocin. Then every time I could have a contraction Kate's heart rate would drop and not recover. This went on long enough it had all the doctors worried so a new doctor I just met that was on call that I loved by the way. She told me we were doing an emergency Caesarian. That was a sad moment it wasn't part of my plan and even though I'm now that mom who has a printed out strict birth plan I was still up set but it was the safest option to get my girl here safely. So in ten minutes I was prepped and freaking out in the O.R. Luckily Todd was there he kept is cool that was the only thing keeping me from hyperventilating and having to be put in a straight jacket! I am awake on the table with the sheet up so I can't see what's going on but I knew that I was cut open because I could see red reflecting in the lights on the ceiling. It a crazy sensation knowing your pretty much sawed in half whilst being awake!
Next thing I hear is " baby is out!" Then I heard her itty bitty 4 pounds 4 ounce self cry! She came out breathing on her own and didn't need the team of doctors for tiny babies that was standing by. They let us hold her while I got sewn up. Then they took her to the NICU where she spent the next 6 days.
I got my epidural and got started on pitocin. Then every time I could have a contraction Kate's heart rate would drop and not recover. This went on long enough it had all the doctors worried so a new doctor I just met that was on call that I loved by the way. She told me we were doing an emergency Caesarian. That was a sad moment it wasn't part of my plan and even though I'm now that mom who has a printed out strict birth plan I was still up set but it was the safest option to get my girl here safely. So in ten minutes I was prepped and freaking out in the O.R. Luckily Todd was there he kept is cool that was the only thing keeping me from hyperventilating and having to be put in a straight jacket! I am awake on the table with the sheet up so I can't see what's going on but I knew that I was cut open because I could see red reflecting in the lights on the ceiling. It a crazy sensation knowing your pretty much sawed in half whilst being awake!
Next thing I hear is " baby is out!" Then I heard her itty bitty 4 pounds 4 ounce self cry! She came out breathing on her own and didn't need the team of doctors for tiny babies that was standing by. They let us hold her while I got sewn up. Then they took her to the NICU where she spent the next 6 days.
THE SAGA CONTINUES..
This might get a little graphic. Buckle up. Over the next month I had a lot postpartum bleeding. I cleaned up several messes on my bathroom that looked like a murder scene! I even embarassed myself in front of my in laws and a bunch of their friends in Chiles when I started bleeding in my chair so much that before I could jump up and run to the bathroom I had bled off of my chair onto the floor. It was awful! I had had 4 or 5 episodes like this and everytime it would happen I'd call my doctor's nurse and everytime they would ask "are you filling a pad within an hour?" And I'm like "ummm I could fill a bucket in 5 minutes". I'm sure they thought I was exaggerating (I wasn't) they would tell me it was pretty normal to have heavy bleeding after a C-section. I even had an appointment with him and all he did was pole my incision and send me home. The very next night my sweet mother in law came over to stay the night and get up with Kate in the night cause she knew I was feeling awful and my poor hubby was exhausted cause he was back at work now. So I gave Todd a late night hair cut after I cleaned up. I started bleeding so I sprinted to the bathroom and I thought "yay I made it before I bled through my pants. GO ME!" I sat there and basically peed out a thick stream of blood for the next few minutes (sorry that's TMI!) then I started feeling really hot and nauseous and I was seeing black spots. I called my husband in he could tell I was in bad shape. I told him I just needed some water. At this point he was propping me up on the toilet so his mom handed him the glass of water, he handed it to me and I could hardly hold it and I was spilling it all over myself. I was feeling a terrible downward pain thought out my whole body. It's a weird sensation, it's hard to describe. I was leaning on Todd and I kept telling him i was going to pass out and I was scared. Then I could feel my face draining completely of blood then everything went black. I slumped over my legs. At this point my mother in law ran and called 911 and she gets emotional everytime she talks about it. She said that Todd started hysterically yelling my name and yelling for me to come back. Then whole still uncinsious I started vomiting. I started to come to while still vomiting. I thought I was bleeding out of my face. Luckily not! Todd has trying to catch my throw up in his hands and he had tears rolling down his cheeks. I looked down and saw that my legs where so pale I had absolutely no color. I looked like a corpse. Todd kept repeating "you're going to be ok" seeing him so upset made me burst into tears. I could tell Cindy was on the phone with first responders I was so relieved! After I woke up I actually felt a little better and could sit up by myself. Since I just threw up all over myself I had Todd running around the house getting me clean clothes to wear to the hospital. It was 11:30pm and I had 5 firemen and EMTs and 1 police officer walking through my house. It was so embarrassing being 1/2 naked ok the toilet when they arrived! I guess they see that kind of stuff all the time so no big deal. They rushed my to the hospital and I underwent some REALLY invasive tests twice! Once by the E.R. Doc and once from the OB that delivered Kate. Results were some what inconclusive. The answer they came up with was that I had bled 1/2 to death. I lost 1/2 of the blood in my body! Also the spot where my placenta attached to my uterus wasn't healing and that's where all the bleeding came from. They put me on lots of pills and hopes it would work. I had 2 blood transfusions. I felt like a vampire I had no idea getting a strangers blood interveiniously could feel so good! Some of the doctors say this could have happened because of my auto immune disease. Others say it wasn't and none of them know of this could happen to me again.
I share my story in hopes that someone will hear it and will ask their doctor to check their thyroid during pregnancy. I really wish my doctor had been on top of it. Hyperthyroidism is pretty common after child birth and most women don't even know they have it and it goes away in time. However for some of us it sticks around and gets worse and worse! If I hadn't run into my cousin at that baby shower I'm positive my little Kate would have been a stillborn. It has been a huge testimony builder to me that The Lord stepped in and put the right people in my life at the perfect moment so that I get to have a sweet little girl in my arms! Pregnancy with undiagnosed hyperthyroidism are likely to end with premature birth, low birthweight and stillbirths.
This might get a little graphic. Buckle up. Over the next month I had a lot postpartum bleeding. I cleaned up several messes on my bathroom that looked like a murder scene! I even embarassed myself in front of my in laws and a bunch of their friends in Chiles when I started bleeding in my chair so much that before I could jump up and run to the bathroom I had bled off of my chair onto the floor. It was awful! I had had 4 or 5 episodes like this and everytime it would happen I'd call my doctor's nurse and everytime they would ask "are you filling a pad within an hour?" And I'm like "ummm I could fill a bucket in 5 minutes". I'm sure they thought I was exaggerating (I wasn't) they would tell me it was pretty normal to have heavy bleeding after a C-section. I even had an appointment with him and all he did was pole my incision and send me home. The very next night my sweet mother in law came over to stay the night and get up with Kate in the night cause she knew I was feeling awful and my poor hubby was exhausted cause he was back at work now. So I gave Todd a late night hair cut after I cleaned up. I started bleeding so I sprinted to the bathroom and I thought "yay I made it before I bled through my pants. GO ME!" I sat there and basically peed out a thick stream of blood for the next few minutes (sorry that's TMI!) then I started feeling really hot and nauseous and I was seeing black spots. I called my husband in he could tell I was in bad shape. I told him I just needed some water. At this point he was propping me up on the toilet so his mom handed him the glass of water, he handed it to me and I could hardly hold it and I was spilling it all over myself. I was feeling a terrible downward pain thought out my whole body. It's a weird sensation, it's hard to describe. I was leaning on Todd and I kept telling him i was going to pass out and I was scared. Then I could feel my face draining completely of blood then everything went black. I slumped over my legs. At this point my mother in law ran and called 911 and she gets emotional everytime she talks about it. She said that Todd started hysterically yelling my name and yelling for me to come back. Then whole still uncinsious I started vomiting. I started to come to while still vomiting. I thought I was bleeding out of my face. Luckily not! Todd has trying to catch my throw up in his hands and he had tears rolling down his cheeks. I looked down and saw that my legs where so pale I had absolutely no color. I looked like a corpse. Todd kept repeating "you're going to be ok" seeing him so upset made me burst into tears. I could tell Cindy was on the phone with first responders I was so relieved! After I woke up I actually felt a little better and could sit up by myself. Since I just threw up all over myself I had Todd running around the house getting me clean clothes to wear to the hospital. It was 11:30pm and I had 5 firemen and EMTs and 1 police officer walking through my house. It was so embarrassing being 1/2 naked ok the toilet when they arrived! I guess they see that kind of stuff all the time so no big deal. They rushed my to the hospital and I underwent some REALLY invasive tests twice! Once by the E.R. Doc and once from the OB that delivered Kate. Results were some what inconclusive. The answer they came up with was that I had bled 1/2 to death. I lost 1/2 of the blood in my body! Also the spot where my placenta attached to my uterus wasn't healing and that's where all the bleeding came from. They put me on lots of pills and hopes it would work. I had 2 blood transfusions. I felt like a vampire I had no idea getting a strangers blood interveiniously could feel so good! Some of the doctors say this could have happened because of my auto immune disease. Others say it wasn't and none of them know of this could happen to me again.
I share my story in hopes that someone will hear it and will ask their doctor to check their thyroid during pregnancy. I really wish my doctor had been on top of it. Hyperthyroidism is pretty common after child birth and most women don't even know they have it and it goes away in time. However for some of us it sticks around and gets worse and worse! If I hadn't run into my cousin at that baby shower I'm positive my little Kate would have been a stillborn. It has been a huge testimony builder to me that The Lord stepped in and put the right people in my life at the perfect moment so that I get to have a sweet little girl in my arms! Pregnancy with undiagnosed hyperthyroidism are likely to end with premature birth, low birthweight and stillbirths.
This is really the tip of the iceberg of all the nonsense I've had to deal with. I never knew diseases like this existed so stay informed. Diagnosis Is a simple blood test. Watch for the signs and talk to your doctor!
My mom has Grave's disease as well (as does my grandpa) and at one point she weighed only 99 pounds (at age 52!). They eventually had to just kill her thyroid because they could not regulate it through meds. She never had the bulging eyes, though. So scary! I feel like you are so young to get it. Is it common in younger women? I hope as time goes on your body will regulate as best as it can. Thanks for sharing and good luck!
ReplyDeleteWhen I took classes for applied endocrinology, I learned that in 17th century a mild goiter has been viewed as a sign of female beauty and fertility(!).
ReplyDeleteYou suppose to name it "Madam's apple!"