My birthday had been a momentous occasion. Ever since I was eight years old I had been suffering from a rare, degenerative, life-threatening chronic illness where tomorrow was not a guarantee (Just a few days after my birthday I’d had severe anemia and an underactive thyroid added on to my growing list of health issues), so my nineteenth birthday was something to be joyously celebrated.
I also was basking in the glow of having graduated high school and finished up my first year of college simultaneously. I had been homeschooled through half of middle school and all of high school so I was able to take college courses for both high school and college credits.
After my birthday and graduation, I suffered from what my parents called boredom or anxiety or a letdown. They had a new theory every day. In my opinion, which eventually got backed up by Dr. Green a few weeks later, I suffered a worsening of my disease processes.
The headaches intensified. They got so bad that I blew through my entire supply of oxycodone and then Dr. Kaye, my pediatrician/adolescent medicine doctor, concerned by how fast I’d gone through them, wanted to wait for a little bit to prescribe more. The pain was comparable to having a knife gouged into one’s head and then twisted and jarred around before being pulled out and jabbed in again. This pain would only be comparable if said knife was on fire.
I also was so drained all the time that I barely had the energy to do anything anymore. My friends would call me and try to entice me to get me to leave the house and go to the mall or bowling or mini-golfing or swimming or to the movies. The problem was the idea of getting out of bed was too overwhelming with the fatigue I was experiencing. It was like my 80-pound body actually weighed 800 pounds and I couldn’t lift my heavy limbs enough to actually move them out of bed. My eyelids were so heavy that to keep them open required too much effort. Even talking was too difficult. I could only get myself to speak in whispered tones that still came out slurred.
I literally slept all day and couldn’t even find the energy to reposition myself in bed.
When it came time for my appointment with Dr. Green it took my mom a long time to get me out of bed. Luckily my mom had realized that would probably be the case and so she had started trying to wake me up four hours before the time we were supposed to leave,
She would wake me up and I would open my caked-with-sleep eyes and try to get the blurriness out and raise my head off the pillow but my head would be so heavy and everything felt so foggy and far away and my eyes wouldn’t want to stay open. My lids would melt shut again and then I wouldn’t be strong enough or awake enough for the seemingly major task of raising open those eyelids again.
My mom would have to loudly call my name, yell my name, shake me, pull my covers off, splash me with cold water. Finally, two and a half hours later, I woke up and slowly dragged my sleep-fogged heavy body out of bed, into a t-shirt and leggings and pulled a brush through my hair. Then I grabbed my purse and stumbled after my mom into the car.
At her office, Dr. Green went over the lab results and her thoughts with us as I struggled to stay upright with my eyes open, attempting to ignore the feeling that I had a knife stabbing me in the right side of my head. My mom sat next to me rubbing my shoulder. She could tell how sick I felt. Some time in the course of waking me up that morning, she had realized that something other than just boredom was wrong with me.
“The first thing I noticed right off the bat was your thyroid-stimulating hormone.” Dr. Green remarked. “Your level is way, way, way above the upper normal limit of 4. Your T4 levels are very low as well. Those two labs indicate that you have a very underactive thyroid, also known as hypothyroidism. Have you been more tired than normal lately?”
Before I could even open my mouth to answer my mom butted in and said, “Yes, definitely!”
“I’m tired all the time,” I told her. “Ever since I was like eight and couldn’t stay standing up the whole time for prayer services in school because my legs got so fatigued they’d threaten to give out underneath me. But lately, I’ve been so tired that I haven’t been able to wake up and get out of bed. This is the first day in like four days that I’ve actually gotten out of bed and stayed awake long enough to get out of the house. Other than that I’ve just been sleeping all day and waking up only to drink Boost Breeze (a nutritional supplement drink) and eat mashed potatoes.”
“Well, this thyroid issue explains a lot.” My mom said.
“Yes, having an underactive thyroid can cause extreme fatigue like that. Especially when it’s as hypoactive as yours. I’m going to start you on a synthetic thyroid hormone replacement called levothyroxine. I think you’ll be impressed as too how much better it makes you feel.” Dr. Green told me. “You also seem to have a really low red blood cell count, hemoglobin, and ferritin consistent with iron deficiency anemia so I’m also going to call in a script for iron. You’re also quite low on magnesium, potassium, and vitamin D. I’m going to call in scripts for those as well. I also recommend a good daily multivitamin like Centrum One A Day.”
“How was my blood pressure today?” I asked her.
“Still way too high,” she admitted. “I couldn’t find a single reason for that in any of your labs so I’m going to go ahead and order that renal ultrasound to see if that can provide any answers for us. I’ll have one of the nurses go ahead and order that and I’ll see you back in six months. Hopefully, by then, the results of your renal ultrasound will have yielded some answers and we can put together a good treatment plan. I’m also going to have you redo all your labs in four months so that way when you come back to see me in six months I’ll be able to see if we’ve put together a good treatment plan. If your blood pressure top number goes over 200 you need to go to the ER and if it goes over 170 consistently you need to come back to see me sooner.”
I took all the supplements for the next six months and I went to school as well. The thyroid medication made me somewhat less tired. I no longer felt like I weighed 800 pounds. Now I was able to reposition myself in bed. It only took 45 minutes for my mom to wake me up every morning. But I still felt like I was walking around in a big cloud of fog. Another disturbing thing that was happening to me was that despite the fact that all I ate was Boost Breeze and little snack-size bites of mashed potatoes or crackers or noodles, I was ballooning up in size.
In the six months between my second appointment with Dr. Green and my next six-month follow up I went from weighing 80 pounds to weighing 180 pounds. I no longer recognized the swollen obese monster I saw in the mirror. My whole life I’d been tiny at 4’9 and never weighing anywhere near triple digits, and suddenly, here I was huge. This change horrified me, and I couldn’t understand it. No one could. I hadn’t changed the way I was eating or drinking things. I hadn’t changed my activity level, I had simply inflated with fat.
“You must be eating things when you’re not realizing it,” Dr. Kaye insisted. “Maybe you’re eating in your sleep?”
But my mom confirmed that there was absolutely no food missing from the kitchen.
I regularly cried at the beast I had become and at the fact that because we didn’t know what had caused this metamorphosis we had no idea how to reverse it. When I looked up “underactive thyroid” on the internet, it did say that the condition caused weight gain, but there were no case studies where the patient more than doubled their weight after starting the synthetic thyroid hormone treatment intended to reverse the effects of the disease.
The newest development was that now that I was so overweight, my blood sugars were reading high. Dr. Kaye checked a fasting glucose at 210 and immediately told me we needed to check my A1C because I was testing in the diabetic range. When my A1C came back at 7.2 I was officially diagnosed with type two diabetes and referred to an endocrinologist. Like I didn’t have enough doctors!
First I met with a nurse who was a diabetic educator. She set me up with a blood sugar testing kit and showed me how I would now check my blood sugar four times a day. I had to put the lancet into the lancing device, put a testing strip into the machine, wipe off my finger with an alcohol prep pad, poke my finger with the lancing device, squeeze a drop of blood onto the tip of the test strip, and then wait for the blood sugar to read. The nurse also talked to me about a diabetic diet and I had to explain to her that I really only consumed three Boost Breezes a day along with a few bites of mashed potatoes. She kept trying to tell me I must eat more than that, frustration percolated inside me and then finally bubbled up to the top and I yelled at her.
“I don’t know how I gained all of this weight, but I know how much I eat and drink and it’s never more than 1000 calories in a day.”
The nurse just looked at me shook her head, and laughed a little.
“We hear that all the time from you people,” she said.
It took everything I had not to jump up and lean across the desk to strangle her.
“I get attitudes like this all the time from you people,” I told her. “It’s too bad you guys don’t get to walk a mile in our shoes.”
The endocrinologist they set me up with was a young friendly doctor whose name was Dr. Gordon. She put me on a medication called Metformin that I was supposed to take twice a day. She also had me switch off from drinking Boost Breeze to drinking Glucerna which she said would be better for blood sugar control.
My blood sugars barely improved with the metformin and the Glucerna switch, but Dr. Gordon promised me we’d figure out a way to get the diabetes under control. All I wanted to do was find something stable in my life and hold on to it so I didn’t get pulled under with this rushing current of declining health that was threatening to sweep me away with it.
I still managed to attend most classes at school at least. The only times I missed were if I ended up in the hospital due to a brief acute crisis that required more intensive treatment than could be given at home. Even then I would bring my laptop and textbooks and notes with me and work and study from my bed in the hospital. My determination to go to a four-year school and get a BSN in nursing was fierce. All my life nurses had made such an impression on me that I wanted the chance to be that impression on someone else. Also, I found the science behind the human body, its inner workings, and the science in treating it, fascinating.
When my six-month follow-up with Dr. Green rolled around, I was on pins and needles waiting to hear what she had to say. The night before I had prayed my heart out, hoping she would have answers for us. I’d had the renal ultrasound and the repeat blood work, so something should have shown up.
“The renal ultrasound was negative. Your kidneys look absolutely normal as do your adrenal glands and all the vessels and surrounding structures. However, some of your labs are concerning to me.” Dr. Green told us.
“What’s wrong with my labs?” I asked.
“Well, the good news part is that your thyroid is now normal with the 100 mcg of levothyroxine on board. However, that’s a little surprising with all the weight you put on so quickly. But the bad news is, even with the iron supplements your hemoglobin, hematocrit, and ferritin are lower than last time. Also, you’re on the potassium supplements but your potassium is still very low. Your magnesium and vitamin D are also low even though you’re on the supplements and your albumin and prealbumin are both low indicating poor amounts of nutrition. Are you not eating much?” She asked me.
I almost burst out laughing because according to everyone else I was eating constantly and way too much, and yet here we were with my labs showing the true facts that I was barely eating.
“I just drink three Glucernas a day and then have maybe a few bites of mashed potatoes, crackers, or noodles in a 24-hour period,” I explained.
“Well, that’s why your nutrition values are so low.” Dr. Green explained. “We might need to give you some IV infusions in the infusion center to bring your levels up. Would that be okay with you?” she asked me.
“Yeah, I guess that’s fine,” I agreed. All I wanted was to be healthy enough to finish up at HCC so that I could transfer to Elms’ College (the four-year college with the best BSN nursing program in the area).
“Okay, great.” Dr. Green smiled at me and picked up her phone. “Hi, Millie (she spoke into the phone to her medical assistant), can you schedule Becca Pava for an infusion session for IV iron and IV potassium? Great….Great….Thank you….Okay…Bye.”
Dr. Green set us up with the dates for the infusion room and then looked at me really seriously.
“There is something going on with you. Something tying all of your symptoms together, including this crazy weight gain. I’m going to figure it out. Let me stabilize you right now, get some infusions going. I’m going to increase your Metoprolol to bring down your blood pressure and lower your heart rate. I’m also going to test your urine for 24 hours for a couple of rare diseases. You’re going to need to pee into a hat in the morning when you first wake up. Discard that urine. Then the rest of the day pour all of your urine into the orange jug I’m going to give you. The following morning at the same time you discarded the first urine you’re going to collect one last urine, then you’re going to bring the jug to the lab with the time you started the collection written on it and the time you ended the collection. Okay?”
I nodded. I felt empowered. We were going to figure this out. I wasn’t going to stay this hideous beast forever. I was going to get my dainty princess figure back after all.
“I’ll see you back in three months this time.” Dr. Green decided. “Hopefully by then, we’ll have more answers.