My name is Sebastian, but all my friends call me Baz. I am a 40-year-old male living in Staten Island, New York, and I have been living with Hashimoto and Hypothyroidism for about two-and-a-half months now. Actually, let me rephrase that – I was diagnosed with Hashimoto and Hypothyroidism within the last two-and-a-half months. As many people dealing with Thyroid issues know firsthand, it’s more than likely that I have been living with this my whole life, without even knowing it.
I wish I can give you specific instances in my past where I know without a doubt that my Thyroid was out of whack, but the truth is I can’t. I can only look back at instances, and knowing what I know now, can say “oh ok, I get it.” But you know what they say about hindsight.
From as far back as I can remember, there are certain things that have always been associated with me medically: I was considered underweight, and I had high blood pressure and cholesterol. I never made anything of it because I just thought that it was what it was. Looking back now, I wonder if this was an indication of what was to come.
There were two instances in my life where things had gotten pretty bad personally, and my family thought it would be best to put me under psychiatric evaluation and care. Both instances, I was immediately diagnosed as Bipolar Depressed, and placed on the “appropriate” medication. However, in both instances, after seeing a therapist for only a month or two, the therapist would take back the diagnosis and take me off the medication. Knowing what I know now about Hypothyroidism and Hashimoto’s, I question if those times of high stress in my life manifested itself with flare-ups. Again, hindsight.
The first time I had ever even heard the word Thyroid was back in 2010. Around that time, I was gaining weight (not much, but a noticeable amount on my face and belly), and I went to the doctor for a routine check up. After blood work was done, my doctor at the time came back and said that my blood pressure and cholesterol was high and I had put on about 25 pounds. He said it could have been attributed to many things, one of which was my Thyroid. In the end, he put me on something called Simcor, which I just read is primarily used for cholesterol. The following month, I went for a follow up, and my numbers were great. I was told I didn’t have to take Simcor anymore, and there was no mention of my Thyroid ever again.
Around Thanksgiving 2013, I started to feel very run down and tired. Actually, tired isn’t the right word. I felt exhausted. At the time, my now ex-boyfriend’s mom was really ill and in and out of the hospital, where I would spend my nights or any time I wasn’t working. Professionally, I just was given a pay cut, and was struggling to make ends meet. So I figured it was just stress. I spoke to a few of my friends about it, and they said I should go to the doctor because I wasn’t myself, but my focus was on my ex and his mom, and being there for him. In January 2014, his mom passed away. From that point forward, my health and well being started to significantly change.
I started noticing I was getting bigger – not fat, but swollen. I was also noticing that I was exhausted all the time. My ex and I would go to shows, or parties, or family functions, and I would constantly say I couldn’t wait to go home and get into bed. I would spend most Sundays sleeping. My hair began to really thin out, which I attributed to turning 40, and my skin was pale. My desire to fool around went down, despite how much I loved him, and I was moody all the time. The stupidest little thing would hit every last nerve I had. My concentration wasn’t there, and I would actually lose interest mid-conversation with people. My ex didn’t know this, but many times I would go into his bathroom and sob, but not know why. He felt that I was using things as an excuse to avoid his friends and family, and as much as I swore I had no issues with anyone, he didn’t want to believe me.
I can actually tell you the moment where things changed, and I knew something was definitely wrong. It was in the summer of 2014, and we were in the car returning home from Kmart. We had gotten into a fight, and I was told I was a negative person, antisocial, standoffish, and even a snob in some situations. He called me a terrible name and I just went off. At some point, in my head, I realized that this wasn’t right, or even like me. I looked out the window, and I remember turning back to him and saying something is wrong. I didn’t feel like myself. I even said, I think it has something to do with my Thyroid. For months following, I kept feeling something was wrong, but would put off looking into it. For me, other things were going on that took priority.
This past February, I went to Urgent Care due to a case of Bronchitis. Blood work was done, and the results showed that my blood pressure was so high, I was at heart attack level, my cholesterol was skyrocketing, I was diabetic, I needed to stop smoking and excessive drinking and I was overweight. Those results didn’t sit well with me because some of the findings were not accurate to my life, and I decided to go to my doctor for a second opinion.
My doctor ordered a complete batch of lab work, including tests on my Thyroid. Sure enough, my Thyroid levels were completely off, and I was diagnosed as having Hypothyroidism. She explained to me that under extreme stress, the Thyroid can go completely out of whack. Hypothyroidism would make a person extremely tired, extremely moody, puffy, kill your libido, and some people would even say depressed or bipolar. Things I actually would have no control over, but would effect me. I was also told my Liver enzyme levels were very high. She prescribed 100 MCG of Synthroid for my Thyroid, Crestor for my Cholesterol, Chlorthalidone for my Blood Pressure and a Potassium pill because the Chlorthalidone is a water pill that would make me pee all the time, causing me to lose Potassium. I also was told to change my diet, and stop eating red meat, fried foods, cake, cookies, soda, candy (A BIG ONE FOR ME) and anything else I actually enjoyed. My weight at the time was 189, and I was normally 145-150.
For the first two weeks after starting all these meds, I felt great. I had energy again, I was able to concentrate and I started to drop weight. Within two weeks, I had lost 23 pounds. People, including my ex’s family, were saying I seemed like my old self. My libido had returned. The following week, my ex broke up with me. He felt I was very negative, and questioned our compatibility.
In the weeks to follow, I have had many doctor appointments and tests done. I was told in my first doctor’s appointment that depending on how long my Thyroid had gone untreated, it could open the door to things like Alzheimer’s/Dementia and even Parkinson’s. Because my paternal grandfather had Alzheimer’s, my doctor felt it was best I went for neurological testing. I went and had neurological tests and a CT Scan done. Weeks later, I found out that the CT Scan of my brain showed scar tissue in my Prefrontal Cortex, signifying signs of a stroke. They couldn’t give me an exact date of when it happened, only that it occurred within the last two years.
It was explained to me that the Prefrontal Cortex is responsible for a person’s social abilities, moods and emotions, among other things. With damage to that area, things that would normally be shrugged off would become “code red” very easily. I also would be socially awkward and standoffish. Again, something that I can’t actually help or control, no matter how much I tried. I actually wouldn’t even know it was happening. Between that and my Thyroid, I now had an explanation for the last year and a half. Something called Biofeedback was recommended to help me with different ways to compensate for the damage done to my brain, and ways to stop myself from hitting “code red.”
About four weeks later, I began to notice things getting weird again. All of a sudden, my energy dropped significantly, and I couldn’t focus on anything. I was having trouble getting stuff done at work. I also was cold all the time. I would sleep with the heaters on, and still be under my covers in sweats, shivering. My weight was dropping significantly, and by then, I couldn’t tell if it was diet, Thyroid, or the break-up. Something wasn’t right, and I kept saying to my friends that there was more going on than just my Thyroid.
At my next doctor’s visit, I found out I now weighed about 111 pounds. She ordered more blood work and a chest x-ray because I had a cough, and she was testing for Walking Pneumonia. She also wanted to test for things like Lyme’s Disease, Lupus and Mono, just to find out why I was so exhausted. When the test results came back, I found out that I tested positive for Epstein Barr, which would cause me to be extra tired, especially when combined with Hypothyroidism. She also informed me that the x-ray found a lump above my right lung, and set-up a CT Scan.
Something still didn’t sit right with me, and so I decided to make an appointment with an Endocrinologist. She did a batch of blood work herself, and a Sonogram of my Thyroid. She informed me that what I have is an autoimmune disease called Hashimoto Thyroiditis, which causes Hypothyroidism. It had weakened my immune system so that it was more susceptible to things like Epstein Barr. Her test results showed that my Synthroid levels were way too high and that it was making my Thyroid go from hypo to hyper. With Hyperthyroidism, there is extreme weight loss, anxiety and panic attacks and fainting spells. A few days prior to this appointment, I had my first ever anxiety attack and fainting spell in the middle of Central Park, in front of many people, including my ex.
The Endocrinologist immediately lowered my dosage of Synthroid from 100 MCG to 25 MCG. She also found three lumps on my Thyroid, and ordered another Sonogram to confirm. Since starting on the lower Synthroid dosage, my energy level and appetite have returned, my head is not so foggy and I haven’t had an ounce of anxiety or panic or fear of fainting. I also had a moment while getting a haircut recently. The person cutting my hair asked me if I was a Cancer patient. When I asked why, she said that she saw hair beginning to grow in the places where it was thinning, and thought I had gone through Chemo.
This has been my journey up until today, and if I can impart some wisdom from my journey onto others, it would be the following:
- No matter what others want to say or think, know that you are not crazy. If you think something is wrong, you know yourself better than anyone else, so follow your gut.
- Always trust your instincts and don’t accept any diagnosis if you don’t agree. Get a second, third and fourth opinion if you feel it necessary.
- Ask questions and educate yourself. I’ve been extremely proactive in my journey. As soon as the doctor gave me some kind of news, I looked it up and asked about things I didn’t understand. The doctors may get annoyed, but as long as you are paying the bills and it’s your health, they can just deal.
- Don’t be afraid to be vulnerable and ask for help. Being an extremely independent person, this is one of the biggest lessons I learned through all of this. Asking for help is not a sign of weakness.
- Surround yourself with the right people. I have had people who claim to love, care and that I matter to completely turn their backs on me and even had people question all my medical issues. For me, I needed to step away, and put everyone at a distance, then slowly bring back in the people who genuinely cared.
- Be very vocal with your support team and doctors in regard to your needs. They can’t help you unless you are open and honest.
- Although no two people’s journeys are the same, know that you are not alone in this. There are support groups and websites with lots of people going through things similar to you. Reach out. One thing I learned is that nobody will understand this situation more than someone else going through it.
- It is not your job to change people’s minds. If they would rather want to believe the worst of you, that speaks about them and their character, not yours.
- Learn to forgive yourself for things you couldn’t control or know was happening.
- Find something you enjoy to make yourself feel better. For me, that was getting back into my writing. But it can be anything you love like yoga, the gym, dancing, painting or whatever puts a smile on your face again.
This journey has definitely been an emotional roller coaster. People tell me all the time how brave and strong I am, but the truth is I cry, I panic, I freak out, I’ve asked “why me” and I get upset and angry, and I have even gotten to the point where I thought I could never come back from this. I don’t understand a lot about everything going on, and it can be completely overwhelming and mess with your mind at times. I guess that’s one of the reasons I felt the need to be vocal about what I’ve been going through. Maybe, all the craziness I am dealing with will help make someone else’s journey easier. I know that I will be dealing with this for the rest of my life. There will be good days and bad days, but knowing I’m not alone in this and that other get it, gives me a strength I can’t describe or even knew I had.