Prior to this date, there were signs that something was going on with me, health wise. I was putting on weight and losing hair, wanting to sleep all the time, lost my sex drive, procrastinated on projects, and went through more mood swings than an episode of “Real Housewives." The people I surrounded myself with at the time were using terms like standoffish, anti-social and overall bitch to describe me, as people who really knew me were saying I wasn’t myself. Every aspect of my life, from work to my (then) relationship, was suffering, but for one reason or another, I just chalked it all up to being stressed and getting older.
That was until I went to Urgent Care for a case of Bronchitis and walked away with test results that showed I was an overweight, diabetic alcoholic on the verge of a heart attack. Being that I wasn’t overweight, a drinker or a diabetic, I figured it was time to see a doctor. After telling my Primary Care Physician what was happening and a batch of lab-work, on February 19, 2015, I was taught some new words that would become a major factor in my life: Hypothyroidism and Hashimoto Thyroiditis.
At that time, I had no idea what a Thyroid even was. I just knew I had high cholesterol, high blood pressure, was considered pre-diabetic and was at 190 pounds, and these all were things linked to something called a Thyroid. The doctor prescribed four pills, one being Synthroid, and they were going to make things better. Being that I was basically scared by what I was being told, and trusted my doctor to do what was best for me, I took my prescriptions, made a follow-up appointment and went on my way. To be honest, and sometimes I still believe, if she had told me that bird-shit would cure what was happening, I'd be licking a parrot's ass every night. What happened after that could only be described as a giant roller coaster ride.
The first three months involved a lot of online reading, meetings with all different types of specialists, from Neurologists to Gastroenterologists, and so many tests. Like I said, I was scared, and all the possible long term effects of Hashimoto and Hypothyroidism that I was reading about online were a lot for me to handle. Through all these specialist appointments, I discovered that at some point, I had a minor stroke that affected my brain, and that there were lumps on both my Thyroid and one of my Lungs. It was beyond overwhelming, and I just wanted to give up.
My low point arrived in what I have come to call "Hell Week." At this point, I had dropped almost 90 pounds in a two-month period, was cold all the time, and knew something wasn't right. I then had the distinct pleasure of having my first anxiety attack and fainting in the middle of Central Park after participating in the AIDS Walk. I met with my first Endocrinologist soon afterwards, and found out my Synthroid dosage was so high that my body was going from Hypo to Hyperthyroidism. She lowered my dosage, and did an ultrasound on my Thyroid. She was concerned with one lump, but felt it was too small to do a biopsy. At that point, I felt like all I ever heard was bad news, and I voiced my feelings to my Endocrinologist. Her recommendation was I see a psychiatrist. I walked out of that appointment beyond frustrated, but she was "the expert," so what was I supposed to do?
The next three months were a breath of fresh air. My levels had gone "in range," and I was feeling good. My cholesterol, blood pressure and sugar levels all went down, and I was taken off all of my meds, except Synthroid. I felt like my old self, and started pushing myself on projects I'd been putting off for a while, like starting a website, writing again, laying the groundwork for my own business, yoga, exercising and marching in the Gay Pride parade. It was summertime, my hair had started growing back in, I was in amazing shape, and was single after the end of a three year relationship. For a hot second, I believed that maybe the Endocrinologist was right, and I was wrong to question her. But like I said, it lasted only for a hot second.
September came, and things began to go downhill again. My Synthroid prescription had run out, and I needed refills called in. I learned that my Endocrinologist was on maternity leave, and would be out until January with no covering physician. Her service called in the refills, and somewhere along the way and for reasons I don't know, my Synthroid was changed to the generic version, Levothyroxine. Again, I didn't question anything and went on my way.
After starting the Levothyroxine, my skin began to feel like it was on fire, I was itchy all the time, I started putting on weight, my hair began falling out again, my skin broke out badly and I had severe stomach cramps. At first I figured these were just typical side effects of a new medication, but after three weeks, I decided this wasn't normal. I went to my Primary Care Physician, who told me that sometimes the binders in Levothyroxine could cause an allergic reaction, and switched me back to Synthroid.
With that ordeal behind me, I focused my energy on finding a new Endocrinologist. You see, even though many of the things like the itching, cramps and breakouts subsided, I was still gaining weight and I was beginning to understand my body enough to know something was off. The best way to explain it was it felt like I was wearing a weighted vest all the time, and I was beginning to have a hard time holding a conversation without sounding like I was slurring my speech or stumbling to get the words out. As soon as it began to affect my job, I knew there was no other option. By some miracle, I managed to get an appointment with an Endocrinologist at a highly recommended facility.
I will admit that going in, I had my guard up, but my new Endocrinologist seemed very knowledgeable and better at asking for my input on things. We started from scratch and she didn't want to rule anything out, so she ordered a battery of tests. Lo and behold, my Thyroid levels, though still in range, had gone up. She decided to switch my Synthroid to Levoxyl, explaining that I'd have fewer side effects. My cholesterol and blood pressure had also gone up, so I was put back on medications to help. It was also recommended that I start taking some vitamins and supplements to help with some other levels. We made a follow-up appointment and I was on my way, a little happier but still leery.
Around this time, I started to experience this "fun" symptom known as brain fog, where my focus just went away. Have you ever heard of it? Well I had read about it and heard people talk about it, but let me say from experience that nothing can actually prepare you for it. It got so bad that for about three months, I could not read a book or even a Facebook status if it was long, watch TV without walking away, or even listen to music or a podcast for more than about 10 minutes at a time without it starting to sound like gibberish. I became good at stalling on stuff that needed to be done at work, and also started walking around with headphones on without listening to music so I could avoid talking to people. I knew it was bad when a friend of mine was directing a show that I wanted to audition for, but I was so worried about being able to remember the lines that I just didn't bother. I had to stop doing so many things that I enjoyed, and that didn't sit well with me.
I decided I needed to be more proactive in my healing journey. The first thing I did was make a spreadsheet of only my Thyroid levels going back from when I was first diagnosed. It astonished me to learn that not only was I never given a full Thyroid panel until I saw the new Endocrinologist, but whatever levels that were actually tested went down on the higher dosage of Synthroid in the beginning, and started going up once my dosage was lowered and then messed up in September. Needless to say, I got angry, and could not wait to go into my follow-up appointment with guns blazing and demand change.
The day of my follow-up appointment came, and I asked my boyfriend of just a few months to come with me as support, and to ask the questions I needed answered should she dismiss me or I forgot to. We did a whole new batch of tests, and this time, not only had all my Thyroid levels gone up, but they were now out of range. In fact, my numbers were about the same as they were when I was first diagnosed. I also managed to put on 40 pounds in a three-month period. My Endocrinologist raised my Levoxyl levels, and at my request and after much badgering, she agreed to add T3. My thinking was it may or may not do anything, but at least I can say that I'm trying everything.
So here I am, a year later. I'm back on four different medications, plus two vitamins and supplements. My weight has gone significantly down and then up in short periods of time that I worry if my heart can handle it, my hair has become it's own version of a Chia pet, and I still have bouts of tiredness and brain fog. I'm not going to lie: I am so over giving blood, and any test that checks ANYTHING beginning with the letter "T." But if you are expecting me to be this angry, bitter person, you will be sorely disappointed. The reality is that I have not only come to accept living with Hypothyroidism and Hashimoto, but I wouldn't change the last year for anything in the world. As crazy as this sounds, it turned out to be a blessing in disguise.
Everything in life happens for a reason, and for me, this was no exception. It came at a time when I was stretching myself way too thin, and putting other people’s needs before my own. I needed to take a step back to reprioritize my life, and Hashimoto/Hypothyroidism were just the kicks in the ass for me to do that. Now, instead of freaking out if I have a list of ten things to do and only getting two done, I just realize it’s two less that has to be done tomorrow. I realized that my physical, mental and emotional wellbeing needed to be the most important things, and I was allowed to say no sometimes. And as much as I like to be a friend and help others, there’s a limit to what my involvement can be. In a way, these things became my inner clock that told me when I needed to slow down and relax. Take my time, enjoy the view and no longer sweat the small stuff, so to speak.
Thanks to Hashimoto and Hypothyroidism, I also learned a lot about the people in my life at that time. I’m sure you all have had those people who don’t understand how you can be fine one moment and then be beyond exhausted the next, or rationalize the situation by stating that you don’t look sick. With a chronic auto-immune disease like Hashimoto, it isn’t as easy to spot symptoms as you can with other illnesses. I get that, and I don’t fault people for not understanding. And the reality is that a lot of things can be covered up. For example, I started tanning to cover up the paleness of my skin, and shaved my head when my hair started falling out. And when clothes don’t fit one way or the other, you just go and buy some new stuff (or get the same thing in a different size in my case). So again, I get when some people don’t understand the dynamics of having something like Hashimoto or a Thyroid condition. Sometimes, I don’t get it either. But I live in my body everyday, so I know it’s happening.
However, there are other people who will tell you that all you really need is to exercise, or stop being lazy, or see a shrink, or get some sleep. I myself actually had someone who claimed I faked being sick or tired just to avoid being around their friends and family, because I hated them. I’ve also been accused of faking my illness to get attention. Honestly, if I wanted to give myself a disease for attention, wouldn’t it make more sense to give myself something more glamorous, or that was known, and that actually had a cure? And one that didn’t involve me sitting at doctor’s offices just about every six weeks, or that didn’t involve me spending all my money on copayments and prescriptions? Anyway, this whole situation became a wake-up call to the true character of some of the people I had associated myself with, and I really needed to get away from their ignorance to save myself.
It took getting diagnosed and finally taking control in my own healing that helped me see my life path, and push me to seize the day and actually do it. Social media is an amazing thing, and while doing all my online research, I came across so many wonderful resources, such as websites, podcasts and Facebook groups that provide so much information, that we as Thyroid patients would never hear about from our doctors for one reason or another. I also have been able to speak and meet people, who are dealing with situations similar to mine (I say similar because it’s important to know that with over 300 symptoms to Hypothyroidism alone, no two people are alike or heal the same), and get it when I simply say that I feel off that day.
It became about something bigger than myself. It was about a community that had to be there for each other, because the doctors and specialists have their own agenda. By nature, I’m a very nurturing and supportive person, and as part of that community, I wanted to do my part and help in whatever capacity I could, whether it be writing pieces like this, starting a Thyroid group for men on Facebook or just speaking publicly about this life. It’s never been about greed. I’m pretty sure that not many people are making money with any of these sites or podcasts or groups. In fact, I think the only people profiting when it comes to the Thyroid are the doctors and drug companies. But for the people who actually are walking the walk and being a voice for those unheard, it really comes from the heart and a place of wanting to help. It is a labor of love.
But in the end, the biggest way being diagnosed helped me was it taught me to not be so hard on myself and let others in. Growing up the way I did, I had to become a very independent and private person, to a fault. Getting diagnosed and experiencing all I had this past year made me realize that I actually needed to be more vocal about how I felt or what was going on, especially with those closest to me, if I wanted to get better. If my inner circle, or doctors didn’t know what was going on, how could they help be a part of the solution? It gave me vulnerability that in the past I would have taken as a sign of weakness, and taught me there was no shame in asking for help.
So Mr. Hashimoto (can I call you that?), thank you for helping me. I have fought so hard to get back to my “old self,” but you made me realize that maybe it’s better to be this newer version instead. The core of who I am will always be there: I still fight for myself, what I believe and what needs to be done, and I’ll always be “crazy” (I was crazy long before you came into my life). But it’s now in a much softer package. And thank you for helping me really appreciate my life and the amazing people in it. I have such a great inner circle of friends who check in with me, and a great boyfriend now who actually can look at me and see something is off, and stands by my side. You also helped me see the importance of giving back, and being a part of the bigger picture by helping others, even if just by speaking out.
And Hashi-baby, please know that no matter who is in my life, you and I will always be together. We will laugh and cry, have good and bad days, I will curse and want to destroy you and you will try to take me out, but we are together for the long haul. And I wouldn’t have it any other way. Here’s to our first year!!!