A Worsening of My Disease Process

After my birthday and graduation, I suffered from what my dad called boredom, anxiety, or a letdown. He 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 process.

The headaches intensified. They got so bad that I blew through my entire supply of oxycodone. Then Dr. Kaye, my adolescent medicine/pediatrician concerned by how fast I’d gone through them, wanted to hold off a couple weeks before prescribing more, so she tapered me down until I wasn’t taking any. The pain from my disease process that no one had a name for, was comparable to having a knife gouged in your head. The pain still couldn’t compare to the knife, unless said knife was on fire.

Sleeping All Day

Because I was so drained all the time from my disease process, when my friends called me to invite me to the mall, movies, bowling, or to go swimming, I turned them down. Just the idea of getting out of bed was overwhelming. It was like my 80-pound body suddenly weighed 800 pounds. It required too much effort to keep my heavy eyelids open. Even talking was too difficult. My speech came out in whispers and slurred tones.

I literally slept all day. Even repositioning myself in bed took too much energy.

Too Tired to Hold My Eyes Open

My mom had to work hard to get me out of bed for my appointment with Dr. Green. Luckily my mom had anticipated having trouble getting me to wake up and stay conscious enough to get dressed. She started trying to wake me up four hours before we had to leave.

Every time she woke me up, I opened my caked-with-sleep eyes and tried to get the blurriness out of them. Then I would try to raise my head off the table. My head would get so heavy. Everything would seem so foggy and far away. Besides, my eyes wouldn’t want to stay open. My lids would melt shut again. I wouldn’t be strong enough or awake enough for the seemingly Herculean task of raising open those lids again.

A 2.5 Hour Wake Up Job

My mom would have to loudly call my name, yell my name, shake me, pull my covers off, and splash me with cold water. Finally, two and a half hours in, I woke up. Slowly I dragged myself out of bed and into a t-shirt and leggings. Then I pulled a brush through my hair and grabbed my purse. Finally, I stumbled after my mom to the car.

What Kind of Disease Process is This?

At her office, Dr. Green went over the lab results and her thoughts with us. I struggled to stay upright with my eyes open. My eyes wanted to shut for a moment, but I knew I would fall asleep the instant those lids went down. Because I was so determined to find out the name of my disease process, I had to stay awake and alert.

My mom sat next to me rubbing my shoulder. She could tell how sick I felt. At some point, while waking me up, she realized that something other than boredom, or a let down was wrong with me.

Having Hypothyroidism

“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 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. “The first time I noticed I had less energy than all my friends was when I was eight. I couldn’t stay standing for the whole prayer service in school. My legs would get so fatigued they would threaten to give out on me,” I told her. “But the fatigue has gotten worse lately.”

Is There Still an Underlying Disease Process?

I wondered if this hypothyroidism was the disease process causing all my issues. Somehow it seemed like there was a bigger underlying disease process that explained everything.

“Hmm, that’s interesting,” she said, looking deep in thought.

From the intense look on her face, I could tell that she thought my disease process went beyond hypothyroidism.

“Today is the first day in about four days that I have stayed awake enough to get out of bed and leave the house. Other than that, I’ve just been sleeping all day and waking up to drink Boost Breeze (a nutritional supplement that’s a clear liquid and more like a juice than a shake).

There is Some Underlying Disease Process Here

“Well this thyroid issue explains a lot,” my mom said.

“Yes, having an underactive thyroid can cause fatigue, but usually not to this extreme even when it’s as hypoactive as Becca’s.” she said to my mom. Then she turned to me. “I’m going to start you on a synthetic thyroid hormone replacement called levothyroxine. It should help you feel better, but I think you have some other disease process going on in there. It’s just hiding from us.”

I knew it, I thought to myself, there is something else wrong with me. Something tying all my symptoms together.

If This Were School, My Bloodwork Failed

“One thing I noticed in your labs is that you have a really low blood cell count, hemoglobin, hematocrit and ferritin consistent with iron deficiency anemia. I’m going to try you on an iron pill that I will call into the pharmacy. Considering your gastroparesis, it may not absorb. You may need to get an iron infusion, which is a bag of dark reddish. brown iron that is infused into your body through an IV that the infusion clinic places as soon as you get there. Hopefully though, the pill will do the trick.”

“Okay,” I nodded.

“You’re also quite low on magnesium, potassium, and vitamin D. I will call in scripts for supplements of those as well. I also recommend a good daily multi-vitamin like Centrum One-a-Day.” Dr. Green added.

Trying to Beat Down My Blood Pressure

“How was my blood pressure today?” I asked her, knowing with my crazy disease process it would be either too low or too high.

“Still way too high,” she told me. “I couldn’t find a single reason for that in any of your labs so I’m going to go ahead and order that kidney ultrasound to see if that provides us with any answers. One of the nurses will order it for you. In the meantime I will increase your Metoprolol by 25 mg in the morning and night and your Spironolactone by 30 mg. I will have you come back in six months.”

“Okay,” I told her, wishing she would see me sooner. I hated this waiting game.

What Are the Emergency Blood Pressures?

In five months I will have you redo all your labs so that when you come back to see me, I can tell if we put together a good treatment plan. If the top number of your blood pressure goes over 200 or the bottom number goes over 110 you need to go straight to the ER. If the top number is consistently reading over 170 you need to come see me sooner,” she told me.

Dr. Green’s Plan Seems to be Working…

For the next six months, I took all the supplements, I went to school as well. The thyroid medication made me somewhat less tired. My mom had to spend about 45 minutes waking me up every morning instead of 150 minutes.

The problem was that I still felt like I was walking around in a big cloud of fog.

Is Weight Gain Part of My Disease Process?

Another disturbing thing that was happening to me was that I was ballooning up in size. It made no sense because all I ate was Boost Breeze and a few spoonfuls of mashed potatoes or a few forkfuls of buttered noodles. I drank one Boost Breeze at every meal, and I ate the few spoonfuls of food either mashed potatoes or buttered noodles, at lunch and dinner.

How was I gaining weight? Was this part of my disease process?

I went from weighing 80 pounds to 180 pounds in the six months between my second appointment with Dr. Green and my next follow-up with her six months later. I no longer recognized the swollen, obese, monster that I saw in the mirror.

Can a Person Just Randomly Inflate With Fat?

My whole body I’d been tiny at 4’10 and nowhere near triple digits, and suddenly I was huge. This metamorphosis horrified me and I couldn’t comprehend it. No one could. I hadn’t changed what, when or how I was eating or drinking things. Even my activity level had stayed the same. Somehow, 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?”

My mom backed me up. She confirmed that there was no food missing from the house.

Becoming an Obese Beast is Not Part of My Disease Process

I cried regularly at the beast I had become. Because we didn’t understand the disease process that had caused this ballooning, we didn’t know how to reverse it. When I looked up “underactive thyroid” on Google it did say that the condition caused weight gain. However 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 process.

My Body Went Into Another Disease Process

Now that I was so overweight, my blood sugars were reading too high. Dr. Kaye checked a fasting glucose at 210 and immediately ordered a blood test 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 II Diabetes and referred to an endocrinologist. Like I didn’t have enough doctors!

First I met with a nurse who was a diabetes education nurse. 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. The nurse also talked to me about a diabetic diet and I had to explain to her that I really only consumed Boost Breeze and a few bites of mashed potatoes or noodles with butter a day.

A Horrible Judgmental Diabetes Education Nurse

“You must eat more than that, you don’t develop Type II Diabetes from drinking Boost Breeze and six bites of food a day. What else do you eat?” She demanded to know.

“Nothing,” I told her. “I have gastroparesis, there’s very little that I tolerate eating, and even the Boost Breeze comes up sometimes too.

“So you are 4’10, 180 pounds, have Type II Diabetes and live off Boost Breeze only?” she asked me.

“Yes,” I told her.

“Your funny,” she told me. “You really think I’m going to believe you”.

My cheeks were flaming red. 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 1,000 calories 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.”

I walked out of there with more steam spewing out my ears than a bathroom after a hot shower.

The Boost Breeze/Glucerna Switch-a-Roo

They set me up with a young, friendly endocrinologist, Dr. Gordon. She put me on a medication called Metformin. I was supposed to take it twice a day. Dr. Gordon also had me switch to drinking Glucerna instead of Boost Breeze. Glucerna was supposed to be better for controlling my blood sugars and slowing my disease process.

My blood sugars barely improved with the Metformin and the Glucerna switch.