Sebastian Kern, Contributor
Sebastian shares his take on thyroid medications.
For those who don’t remember me, let me refresh your memory. My name is Sebastian, but all my friends call me Baz. I am a forty one-year-old male living in Staten Island, New York, and I have been living with Hashimoto/Hypothyroidism for about eight months now. Back in July, Thyroid Nation named me one of their Thrivers, and published my story as it was, up until that point. Actually, that was my story through May 2015. But as all of you know, the Thyroid rollercoaster never actually ends.
When I last spoke with you, I had gone to nine doctor appointments in three days (it was the week of Memorial Day), and I was about to go in for tests to check lumps found in my lungs and on my Thyroid. I had never been so afraid in my entire life, and I cried that entire day. I definitely felt defeated, and actually believed I would never come back from that day.
I received all the test results rather quickly. The CT Scan of my chest showed that the lump by my Lung was a 2mm benign calcium node. Unfortunately, the Sonogram confirmed a 4mm nodule on the right side of my Thyroid that the Endocrinologist was concerned about. But because the nodule was small, she said she wasn’t going to biopsy it. Instead, she decided we should wait six months and then do another Sonogram to see if it grew. Although sitting around and waiting to find out if I had “The Big C” was not my ideal choice, I agreed to wait. Since then, my (now-ex) Endocrinologist has been on a six-month maternity leave with no covering physician, and I still am waiting to do the Sonogram.
Two months or so from that dark period in my life known as “Hell Week,” and after having my Synthroid dosage lowered to 25 mcg, things had turned around significantly. My energy had returned in a totally new way, I was hardly ever tired, and my brain function was in such a positive place. I had started trying different exercise styles, from Zumba to Insanity, and kept my mind and body Zen through meditation and yoga. Biofeedback helped me get back into writing again. It’s amazing how much clarity you get when you put the word to paper, and get to look back and see where you were, and how far you’ve come.
My weight, which had been a serious concern the last few months, had also improved. I had put on 23 pounds, and weighed in at 134 pounds. I know that sounds low, but the fact that my appetite had returned, and the scales were now going up from 111 pounds was major. I had even been taken off of most of my original medications. Apparently, with my lower weight and the proper Synthroid dosage, my blood pressure and cholesterol had come under control. Who knew that when your levels are on point, you could have some sense of normalcy in your life?
By August, I was in a great place. But, as all you fellow Thyroid Thrivers and Fighters know all too well, and as the saying goes: Take everything you thought you knew, and throw it right out the window.
You see, a storm was about to come…
I was getting ready to go back to work for the school year, and we were going in with some major staff changes and issues. I also was working on several personal projects I wanted to launch. Needless to say, I was running myself into the ground and my stress levels were through the roof, and I just began to feel tired. Nothing as crazy as it was months ago where I just wanted to be in bed all the time, but enough to make me notice and slow down a bit.
Around that time, I was on my last refill of Synthroid, and needed to see my Endocrinologist to check my levels and get a new prescription. I contacted her office to schedule an appointment, only to find out that she was on maternity leave, and had nobody covering her caseload. Her service said that they would call in refills to my pharmacy, and I would be covered until she returned in January. I picked up the medication, and saw that they changed my Synthroid to the generic version, Levothyroxine. Being told they are basically the same thing, I didn’t think much of the change, but as soon as I started to take the medication, I realized how wrong that was.
I started to break out in terrible hives, and my hair was falling out. My boyfriend, whom I had just started to date during this period, had also noticed that as time went on, my speech was off, and I sounded like I was lost for words and stuttering. My energy level was going down significantly, and I was having issues concentrating, especially at work. I also noticed that although I didn’t gain tons of weight, I started to look slightly bloated. Being that I had begun to understand my body since first being thyroid diagnosed in February, I knew something was not right. Let me stress to you that I’m not a complainer, and can handle itching and other side effects, but when something effects my livelihood, or I don’t feel like myself anymore, I’m going to be concerned.
One morning at the end of September, I woke up with the side of my face swollen. I called out of work and made an appointment with my Primary Care Physician. I expressed all my concerns to her, and she informed me that the hives were probably an allergic reaction to the binding of Levothyroxine, which happens to some people. Apparently, pharmacies change their manufacturer based on cost, and different manufacturers make Levothyroxine with different binders. We also did blood work to make sure my levels were still “optimal,” only to find my TSH was still in range, but had gone up. The doctor put me back on Synthroid, with the stipulation I not be given any generics. Her hope was that everything happening would correct itself once I was back on the Synthroid.
Over the next six weeks, the hives went away, but the other symptoms had not. I had severe stomach cramps that would keep me up at night. My speech was getting worse, and I also noticed that I was having a hard time recalling things, especially words to songs that I had always known. I also started to trip over myself at times, to the point that I would appear drunk to the untrained eye. Since I didn’t drink and I was tired of waiting for my Endocrinologist to return from maternity leave, I immediately sought out a new one.
My new Endocrinologist sat and listened to me, and we looked over some previous lab results from my Primary Care Physician. She said something to me that I just felt was such a profound statement that I had always thought, but was scared to ever say out loud as not to sound crazy:
that even though my levels come back within range, it did not mean they are in optimum range… FOR ME.
She provided several theories as to what was going on, including vitamin deficiencies and nutritional concerns, as well as different options, should anything come up in my blood work. We did testing, including a complete Thyroid Panel, a Celiac Test to see if I was allergic to Gluten and a Metabolic Test. The tests showed that my Thyroid levels were out of whack. She decided to change my Synthroid to Levoxyl, which is another brand name Thyroid medication but would give me less side effects, and told me to alternate my dosage between 25 and 50 mcg every other day. She also noticed my B12 was extremely low, and could be contributing to my “drunkenness,” and recommended I take a supplement. I also had to start taking my cholesterol medication more often. In January, I will be going in for a follow-up visit.
It’s been two weeks since my visit, and things have improved. I’m still a little itchy at times, and my hair still falls out, but both are known side effects of starting on a new Thyroid medication, and will (hopefully) improve in time. I sometimes get a bit tongue-tied still, but I am slowly coming back into myself and have energy again. I’m not 100% just yet, but I’m getting there. My Endocrinologist also reassured me that if we both find that things are not improving to both of our satisfactions by my next visit, we could look into adding T3 or changing my medication to a more natural one, like Armour or Nature-throid.
After this whole ordeal, I decided to step back a bit, and bring the Thyroid process back down to basics for myself. I had to look within myself and figure some stuff out. The last few months have been a real eye-opener for me, and I realized that as much as I thought I knew about my health, and no matter what I’ve researched, I’ve really only scratched the surface, and there is so much I don’t understand and have questions about.
One thing I’ve noticed since being diagnosed and living with this for a short while, is something that happens now with my friends and family, and even sometimes within myself, that I’m sure every single one of you can relate to. As much as I feel in tune with my body, sometimes when I feel run down and tired, I will second guess myself and question if it’s because I’m actually tired, or because my levels are off. I also have people question my levels if I’m ever upset or angry, and question if my medication needs to be adjusted.
I feel like I’m constantly defending or explaining myself. From doctor’s who don’t take me seriously and want to just chalk things up to getting old and needing to see a therapist, to friends and family thinking I’m just moody or difficult, to coworkers who think I’m lazy or slacking off, and finally to uneducated people who don’t get that having Hashimoto Hypothyroidism is not a death sentence, contagious or something to fear, or worse yet, that I’m faking my illness. It can become annoying at times to deal with, and it makes me laugh at how such a tiny body part, like the Thyroid gland, can totally mess with your mind to the point that you can start to second guess yourself, or that people could and would believe the worst of you.
When all is said and done, the most important thing to stress is….EDUCATION IS KEY! I know it sounds crazy, but the doctor’s don’t have all the answers. There are constant advances found in modern medicine, and some doctors are limited in their way of thinking, or are not up on the new protocols. We live in a time where information is just a click away, and there are so many wonderful websites and resources, with a plethora of knowledge. It’s important for me (and for all of us) to understand our conditions, and all of the different options out there, if only to be able to go back to the doctors and ask more informative questions. And if your doctor doesn’t want to listen, then maybe they aren’t the best person for the job.
What it all comes down to, at least for me, is that we, as a community, need doctors, specialists and patients to come together and help one another. While the outside world wants to tell us to just get some sleep, lose weight and see a shrink, we know better and should be there for each other. Although you may not be experiencing EXACTLY what I am, nobody understands better what I’m going through than a fellow person dealing with Thyroid Issues.
With that said, we also need to remember that we are all individuals, and we all have a different healing process. Look at all the Thyroid Thrivers on this site, and each of their stories. With over 300 symptoms out there for Thyroid conditions, how could there be just one correct way to handle or cure such a disease? The reality is that there are several options for medications, food regimes and vitamins, and what works for some may not work for others. As a Thyroid community, we need to respect each other and where we are in our individual journeys, and how we choose to heal, whether we agree or not. Personally, I think that it’s a matter of finding the right balance of medication (whether natural or over the counter), choosing the best diet and and finding ways to relieve stress. But that’s just my opinion. You need to find what works for YOU!
I have joined several Thyroid groups, met and spoken to so many people, like all of us, struggling with Thyroid conditions, and read what a lot of other people go through everyday. It’s amazing how many of us there really are out there. After hearing some of their stories, I look at what I’m going through, and how I got off easy compared to some others, and I appreciate my life. Having to shave my head, scratch an itch, or take a phallic looking pill is no biggie. And as much as I hate it (and even cheat here and there), giving up some of my favorite foods really isn’t the end of the world, when there are others having their Thyroids removed, going through radiation treatments or can’t get out of bed at all.
So here I am today. I’ve been through hell, but at this moment in time, I’m alive and kicking. At the end of the day, I’m just a regular person with no medical background on this incredible journey. I’m learning as I go along, just like we all are. Yes this disease can totally mess with your mind, and take you down, if you let it. But you can fight it and live a very fulfilling life as well. I get tired just like all of you, and I get upset when I have a list of ten things to do and absolutely no energy. But instead of beating myself up for what I can’t do, I try to do just one thing at a time, and for each one I get finished, it’s one less I have to do tomorrow. I’m choosing to take on this battle, and this jerk of a disease named Hashimoto, head on.
However, the struggle is definitely real, and far from over. Anyone going through this with Mr. Hashimoto, or any autoimmune disease, can tell you that this is something we all will be dealing with for the rest of our lives. There will be lots of great days, and there will be times when our levels will be completely off again, and we will struggle. But I am up for the challenge, thanks to all I have learned along the way, and all the love and support from my family, friends, medical team, and every single one of you who have taken me in, and shared your own struggles. You teach and inspire me everyday, so from the bottom of my heart, I want to thank you.
Until next time…
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About the Author
Sebastion Kern was diagnosed with Hashimoto Thyroiditis and Hypothyroidism in March 2015, at the age of 41. He is a blogger and creator of Baztards.com, a website geared towards empowering people and looking for the positive in any situation. Sebastian lives on Staten Island with his boyfriend, Joseph, and his Chiweenie, Jack. Check out his Thyroid Thrivers story, here.