Both ends of the thyroid spectrum

The thyroid is this butterfly-shaped gland that sits right on the lower part of the neck. It may be small, no bigger than two thumbs held together, but it packs a punch since it releases the hormones that are vital in regulating the body’s metabolism, temperature, system functions, and overall growth and development. 

You’ll be surprised how much havoc this teeny gland can cause and how it practically ruined my life. 

I had always been a thin and underweight child up until my early adult years. Not to exaggerate, but when I say thin, I mean frail and bulimic-looking, with bones sticking out in all places. Ask anyone who knew me from way back and they’ll tell you how terminal I looked. When I see my old pictures it would always make me cringe and feel sorry for myself. 

I was in high school when someone noticed a slight lump growing on my neck and said that I might have a goiter. I thought it might be true, as it was an illness that besieged my mother’s side of the family. And because I was around people who had it (like my mom and aunts) who don’t know better and still believed in old wives’ tales, they said it’s not something I should worry about. After all, they all lived normal lives even when they have it. 

I have no reason not to believe them as I didn’t feel anything out of the ordinary. Sure, I have this lump and I was thin but otherwise, I’m fine. They asked me if I was having difficulty swallowing and I said no. I never paid much attention to my shiny skin or the fact that I can feel my heart racing when I touch my chest. I also didn’t notice the tremors or how I have low heat tolerance (as in, I feel hot even inside an airconditioned room). 

I no longer remember when and why I started to consult an endocrinologist, but I did. After doing many thyroid function tests, I was told I have hyperthyroidism. I was given a medication that I stopped taking in a matter of days as it gave me allergies. But instead of going back to my endo, I went on with my life like I don’t have a disease brewing inside of me. 

***

January 27, 2007, I asked my kuya to accompany me to the ER of Makati Medical Center as I think I was having a bad case of abdominal pain after eating a hotdog sandwich. To cut the long story short, I was confined that day and everyone thought it’s because I had food poisoning from a bad hotdog. 

Things went on a downward spiral quickly thereafter. Suddenly, I am being checked by other specialists and not just the gastroenterologist. One look at me and they all said something wasn’t right. This puzzles me because other than the primary complaint, I don’t feel weak or anything.

After being hooked on IV and a strict liquid-only diet for a couple of days, I was actually getting ready to go home. But at the last minute, the doctors refused to give me clearance and said that I had to stay a few more days as they have to run more tests. 

When my test results came, I was already having what they called a “thyroid storm” or thyrotoxic crisis. The doctors said it was life-threatening and that I’d have to be admitted to the ICU. Now all of this was just baloney to me at the time as I was feeling fine. My family and relatives were as shocked as I was because they all knew that I just went to the ER for food poisoning, and now they’re told that I had to be schlepped to the ICU. For a moment there we even thought that the hospital was merely scamming us and taking advantage of my HMO coverage. 

So I stayed in the ICU for a few days with a cardiac monitor hooked on me to check on my heart rate in real-time. Even when lying down, my heart rate averages at 150 beats per minute so they said that if not treated, I can go into a cardiac arrest. 

Excuse me? Cardiac arrest? 

A few days more and the confinement maxed out my medical coverage. I asked to be released, against doctors’ orders (I had to sign a waiver) and told them I would rather recuperate at home. I argued that the thought of the exorbitant hospital bills piling up was enough for me to palpitate to death. 

After this ICU episode, I went back to work and by then almost everyone noticed that I lost a significant amount of weight. I stand almost 5’7” but I only weigh 90 pounds around this time. I was also very sickly.

Collarbone you say? Around 2007 at a friend’s wedding

My cardiologist, who is also my uncle, referred me to another endocrinologist who later on diagnosed me as having Graves’ Disease, an auto-immune disorder that resulted from the overproduction of thyroid hormones. By this time, my eyes had bulged and I became photosensitive that natural or artificial light can be blinding for me (my protruding eyeballs have exposed my nerves). Family members said that my eyes are partially open even when I’m asleep, and it kinda freaks them out. 

Truly, I was at my worst. With the drastic change in my appearance, I became self-conscious and avoided most people because it did reach a point that I already looked like a gargoyle. It’s great that most people, especially my friends at work, are sensitive enough not to poke fun at it or ask too many questions.

In July 2007, my endocrinologist recommended that I have a low-dose Radioactive Iodine (Radioiodine) Therapy, a procedure often given to patients with thyroid cancer, as it ablates any thyroid tissue. I don’t know why thyroidectomy was not an option but I trusted that my endo knows what’s best for me. 

RAI was given in form of an oral pill that will ultimately destroy the thyroid gland. I remember I was so radioactive after taking the pill, that when they pointed a Geiger counter at me—I actually heard that distinctive sound you hear in movies that suggests radioactivity. I had to be isolated from other people (especially kids and pregnant women) at home and at work for many days.

My post-RAI was no joke. I’ve read somewhere it’s like a milder case of chemotherapy and that is exactly how I’d describe it. For days I have this metallic taste in the mouth. I’ve gotten even weaker; so much so that I can’t even raise my leg to go up the stairs. I remember one time when getting inside a jeepney, I had to pull myself up, sit down (almost squatting) and pull myself up again. I’ve shed so many hairs and was feeling queasy almost every day. My older brother was so mad at this rightfully so, because it appears that the therapy had only worsened my condition.

Weeks post-RAI at a family gathering

Eventually, after a month or two, I got better. I started gaining weight and I don’t have palpitations anymore. Around that time, I attended the wake of my cardio/uncle’s mom and he told everybody, quite matter-of-factly, that I almost died that day at the hospital. It was something that he never told me or my family while it was happening, perhaps to not scare us of that grim possibility, but it was kinda shocking to know that it was a close call for me.

2009: Two years after RAI, full-recovery.

***

My bulging eyes never returned to how it was pre-Graves’, but at least it wasn’t as bad as before. If you will look at me now, you’ll see that my right eye is bigger than my left, and this is very obvious when I look up or if you’re looking at my side view. 

Proptosis is very noticeable from my side view

Among all the many things that my thyroid disease has given me, exophthalmos or proptosis was the worst because it altered my appearance. I once consulted an opthalmologist about it, asking if there could be any surgery that can be done to make my eyes go back to how it was. But when I was told that the invasive procedure would require divulsing of the eyelid and removal of fats and bones between the eye and root of the nose, I decided not to ever consider it again. The exophthalmos will always be my bitter reminder of what could happen if you don’t listen to what your body is telling you.

Doe-eyed. My right eye is bigger than the left

***

Because the RAI had killed my thyroid cells, it is now unable to produce essential hormones that my body needs. Ironically, I now have hypothyroidism, which is the exact opposite of what I had before. In short, my disorder was replaced by another one which practically sucks. Then again, many doctors agree that it will be easier to treat hypothyroidism by taking a life-long thyroid replacement.

Hypothyroidism has a laundry list of symptoms that can make someone who has it crazy. This includes fatigue, weight gain, sensitivity to cold, constipation, depression, muscle aches, dry skin, puffy face, thinning of hair and nails among many, many other things. Sadly, I have been experiencing all of these in the last couple of years and it does frustrate me. 

The past few weeks, I’m having the worst of it. Apart from the symptoms I’ve already mentioned, I have been feeling sick lately. It’s a bit tricky though when I say “sick” because if you look at me, I look fine—even healthy. But underneath it all, I’ve been struggling with joint pains, severe hair loss, sluggishness, lack of energy, and feeling cold constantly. 

And my God—I have severe, depressive mood swings. Most women can blame mood swings on PMS but mine can go on all month long. I feel sorry for people that happen to be in “the line of fire” during my psycho episodes (like hissing at my nephews for the pettiest of reasons). Heck, I am already a temperamental person without this condition, imagine how my whacked-up body chemistry made it even worse. 

I have a feeling that I have to increase the dosage of my thyroid replacement meds. I’m only taking 50 mcg. of Euthyrox (Levothyroxine) every day before breakfast and I’m starting to feel it isn’t enough. I have consulted an endocrinologist last Friday, hoping that she can do something in lowering my symptoms a notch. However, she wouldn’t want to adjust my dosage as of yet without undergoing some tests. 

I was asked to take TSH and FT4, Diabwatch package (which includes Creatinine, FBS, Lipid Profile, Potassium, SGOT, Sodium, Complete Blood Count and Urinalysis), and Hba1c Diastat. I had to do 10-hour fasting (no food and water) last night for this. First thing in the morning today, I went for my blood extraction and urine sample. I’m very thankful that my HMO package covers these tests otherwise it will be a separate problem. The Diabwatch package alone costs a whopping 3,500 pesos and the thyroid function tests at 2,500 pesos.  

I’m hoping it’s nothing serious and that the doctor won’t see any other condition that might affect my heart or kidneys. Something that people with hypothyroidism are at high-risk of.   

I am not alone in this, I know. Thyroid disorder is pretty common and I know a lot of people, even friends, who are struggling with thyroid conditions of their own. They have their own list of symptoms that they are managing every day. This is a tough disease to have because it takes away so much in your life and I just happen to be one of the millions who have it. 

What sucks about my case though is how I’ve been on both ends of the thyroid spectrum.