A bit of background on me, then: I live a small/medium city in the Black Hills of South Dakota. My hobbies include reading, writing, crochet, sewing, sculpture, jewelry-making, drawing/painting, canning, hiking, and scouting farmer’s markets. My favorite place to be is out in the forest where it’s peaceful and quiet, but I also really enjoy staying home and drinking coffee or tea while I crochet my day away. Don’t get me wrong, I’m still plenty active! My husband and I have traveled to different parts of the US in our goal of seeing every single National Park and even had the pleasure of attending our good friend’s wedding in the Dominican Republic back in 2016. I do not want to make the impression that people with hypothyroid are doomed to be tired slugs and never go anywhere or have excitement. See below for some snapshots of our adventures!
I got married a couple of months ago to the most wonderful man I ever have known. He’s been so supporting and encouraging, and without him, I wouldn’t have traveled to half the places I have in the years we’ve been together. His understanding has been key during my struggles especially when I am feeling extra exhausted and has made me want to better understand my own health. It’s depressing when I bring him down during my “low periods” but he’s held me during my hysterics and been a rock when I felt like I was no more than a balloon, cut loose and being battered in the wind.
But he has lifted me up and my family has been amazing, too. As it turns out, hypothyroidism runs rampant in my family and my mom, my aunts/uncles, cousins, etc… all have some form of the problem! There was some relief for me in that — here were people who had experienced this, too. My mom has been so supportive and sympathetic to this entire ordeal. She’s been there for me since I was young, complaining of always being tired and all my crazy mood swings and periods. She’s been with me to several different doctors who told me that I was just hormonal, to take Metformin (for blood sugar?), to try 7 different birth controls, that I had PCOS with no actual cysts, that… that… that…. I cannot say how much I appreciate her being my main cheerleader as I forge ahead with my current doctor for answers and a shot at normality.
Luck gave me a family that understands because it can be a struggle in itself to convince people you have a disease that they can’t see. Most people with hypothyroidism struggle every day just to get out of bed. They have aches and pains that can make daily chores next to impossible and I cannot imagine what a battle it is for the mothers who still have to care for their babies and somehow just make the day work around their symptoms.
We feel ashamed – we’re tired! We gain weight – now we’re just lazy? No self-confidence to start with and then we hear “drink more water and get some sleep, you’ll feel better” or “maybe try jogging? You’ll feel amazing!” I’m sure I would if I could, but I hardly have the strength in my legs to climb the stairs to bed and the aches in my neck and back require daily massaging and hot packs just to function. And I would think about it harder, but my brain feels like it’s floating and I can’t grasp a single thought and hold it for more than a few seconds. I am fuzzy and slow.
To detail a little about my current treatment, I searched out a local endocrinologist back in May. I was feeling terrible (all the symptoms from above I’ve mentioned before) and we tested my blood. I didn’t have high hopes at this point because despite how I felt, my past tests always came back in the “normal” range, that is .34-4.8 TSH. This time, she tested not only my TSH (Thyroid Stimulating Hormone), but my Free T3, Free T4 and my antibodies. This is so important because the antibodies tell a story about your body! If the levels are elevated, it means that your body is fighting. And in this case, it’s fighting itself – trying to destroy your thyroid which has somehow been marked as the enemy. This is called an autoimmune disorder and doctors can’t always explain how or why it happens.
We found that I did have a slightly elevated TSH as well as low T3 and T4 — this is indicative of hypothyroidism. The high level of antibodies spurred her on to do an ultrasound on my thyroid itself and it had several small cysts on it, with one larger nodule on the right side. Her results were as follows:
As you can see, my antibodies (Thyroid Peroxidase) was very high, so was my TSH and my Free T4 was a little out of range. This was enough for her to prescribe me 75mcg’s of Levothyroxine, the generic brand of Synthroid, the artificial thyroid hormone replacement drug.
I started on it right away and within just a couple of days was already feeling better despite her telling me that it could take up to two weeks to start feeling results. I was over the moon! Finally, there was evidence to back up what I was feeling, to show that it wasn’t just in my head. I took my medication exactly as directed and for a while, it worked. But I noticed as a couple months past that my period was going longer and longer in between. This was totally new for me, having had more than my fair share to date than was necessary. I chalked it up in August to the stress of my wedding.
But September came and went with no sign of a period again, either. And I’d started running hot, having hot flashes randomly, my heart was thumping out of my chest sometimes all night long so I couldn’t sleep and my skin was so dried out I was flaking like a lizard. Something was very, very off.
I called the doctor’s office and scheduled a follow up blood test to see where my levels were. The news was not great.
My TSH was WAY below normal range, while my T4 and T3 were very high. I was in serious HYPERthyroidism!! I had swung on the scale and tipped clear over the other side. I was devastated! Not only was I feeling even worse than before, I was having night sweats, heart palpitations, I couldn’t sleep, my hair was falling out and I felt like a walking steam boiler who was blowing apart at the seams. My doctor told me to stop taking all my medication immediately and let my body start to equalize itself.
I had been off of all medicine for about 4 weeks when I was back to feeling worse than I ever had before. I was really struggling to get out of bed and I felt like I could collapse and sleep all day at any given moment. Not to mention my body hurt so bad that even a hot shower and IBU’s couldn’t stop the pain. I called the doc and told her that I couldn’t wait another 3 weeks to check my blood, so she got me in the same day and these results were my most shocking yet.
CAN ANYONE ELSE SEE MY TSH????? 57?? When I’m supposed to be under a 5??? ARE YOU KIDDING ME?? I called my husband as soon as my results came back and he said this: “Well, no wonder you’re feeling so bad.” That’s it.
I was in absolute shock — I couldn’t believe I wasn’t a pile on the floor. It really proved to me that I was in tune with my body and was sensitive to changes. My doctor also was quite startled and she said: ” Thank you for getting your blood work done. Yes off the medications your TSH is quite abnormal at 57. This shows us beyond a shot of a doubt that you are hypothyroid. I wonder if in the past your thyroid function was oscillating because he had little thyroiditis.” We agreed to start me on a lower dose of name-brand Synthroid (25mcg) this time and see if we can slowly put me back to normal, rather than start out with the larger 75mcg dose.
I’ve only just begun on this journey, and at 31 years old, I feel like it’s time I take control for the last time and hold on to it with all my might. I’ve had enough – I’m fed up with feeling sick and tired. Life is calling me and I”m going to answer with everything I can so at the end of the day, when I”m really tired, I know it’s because I lived a good day and not because my body is against itself.
Today is day 1 of my Synthroid trial, but I welcome you to tag along as I run this race. I know so many women (and men!) out there who are struggling just like me. You don’t have to suffer and you don’t have to do this alone. Follow my blog as I post different trials and stories, as well as healing recipes, tips and lots of different crafts to try for when you’re just not up for going out.