That is a picture of me climbing at Joshua Tree in CA. Climbing is something that both thrills me and terrifies me. Overcoming my fear of heights to be able to do climbs like that was quite a feat and quite the journey. Similarly, my journey with thyroid disease has been an adventure.
I have shared a lot about how my children were diagnosed, but I haven’t talked much about my journey with thyroid disease. I’ve heard some people say that we should call it a disorder, but to me, it feels like disease is the right word. Lots of folks ask me what my symptoms were and what led to my diagnosis. The truth is I didn’t have any symptoms – at least none that I had really been paying attention to. I was in my twenties, and my husband and I were trying to conceive our first child. My gynecologist had advised that it could take up to a year of “trying” to conceive. Well, after significant time passed, I still wasn’t pregnant.
I went back to my gynecologist for advice. She suggested that I have some blood work done to test a few things. I agreed to it, and went back in to receive the update. At that appointment, I was informed that I had hypothyroidism. My first thought was “what the heck is that?” I’d never heard of it. My gynecologist explained it to me and then asked if I ever felt over tired, depressed, felt cold, had dry skin or hair loss. I paused as I thought through all of those things. Well, yes, I said, but my Mom has many of those same things, and I just thought it was normal female stuff (of course, we later learned that my mom has hypothyroidism as well – thanks to my being diagnosed and my insistence that she get checked). “Cold hands, warm heart” everyone had always said. I recall my gynecologist looking at me incredulously. She said “being in your twenties and having hair loss isn’t normal”. I was never one to sit around and lament any particular health issue, so I shrugged it off. She cautioned me, though, to pay attention to my symptoms and wrote a prescription for Synthroid (or perhaps it was Levothyroxine). I am not certain what I was taking at that time, because I was more interested in getting pregnant. I wasn’t one for taking medication I didn’t need so I asked my gynecologist what would happen if I didn’t take the medication. She said lots of bad stuff could happen including my heart could stop working. That was enough to convince me to take it, and from there, my gynecologist monitored my thyroid levels. I spoke with a friend who confessed that she too had hypothyroidism and took Synthroid and that she never knew how bad she felt until she realized how good she felt while regulated on the medication. I had a similar experience, and I thought for sure this was the fix. I thought for sure I would get pregnant.
Eventually, I did get pregnant, but it took 2 years. I don’t think I’ll ever know how much being hypothyroid prior to getting pregnant affected my ability to conceive. I still wonder why my thyroid levels weren’t checked when I said I was going to start trying to get pregnanct. But, hallelujah, I was pregnant at last.
I had a normal pregnancy with no complications, except for one thing. That one thing would haunt me for years. My OB checked my thyroid levels regularly throughout my pregnancy. At one visit, we were going over my labs and my OB decided to look back at the labs from the previous month. It appeared that I had been hypothyroid and nobody had caught it when they reviewed the labs (or perhaps the labs weren’t even reviewed). My dose was adjusted, but I was very concerned about my baby’s health during the time that I was hypothyroid. My OB assured me that it was not significant enough to worry about. That was an okay response until my son was born and diagnosed with congenital hypothyroidism.
My first thought was that his hypothyroidism had been caused by my being hypothyroid during my pregnancy. I was consumed with these thoughts and guilty feelings, but finally my son’s pediatric endocrinologist said that it was such a brief period that it probably did not cause his congenital hypothyroidism. I felt better, but it still bothered me for a long time. Honestly, it bothered me until my second child was born and diagnosed with congenital hypothyroidism. I was extremely well controlled during my second pregnancy because by then, I had been referred to an endocrinologist and she monitored me very closely. I had been sent to her sometime after my oldest was born because my OB didn’t want to monitor and treat my hypothyroidism. I was sort of miffed at the time, but I now know what a blessing it was to be sent to a specialist. Anyway, by the time my second son was born and diagnosed, my husband had already suffered through Graves Disease, and we knew that it was very likely any future children would have some type of thyroid disease. I think it lessened my concern about what had happened during my first pregnancy.
So, at what point did I realize I had Hashimoto’s? Well, my endocrinologist wanted an ultrasound of my thyroid done because none of my other doctors had ever ordered one. She also wanted more blood work done including checking for the antibodies that would show whether I had Hashimoto’s. I realized right away that she was a good endocrinologist. The results came back and the antibodies didn’t show up in my blood work, but my thyroid ultrasound revealed a thyroid gland that looked like it was a “Hashimoto’s” thyroid. My endocrinologist said that somewhere around 20% of people with Hashimoto’s don’t test positive for the disease based on the antibody test alone. I asked her the difference between this and regular hypothyroidism, and she explained that Hashimoto’s was an autoimmune disease and that I could be more likely to develop other auto-immune disorders. I recall thinking “whatever” and leaving the office. I was well controlled on Synthroid and felt fine.
That feeling of being fine didn’t last that long. After my second son was born, I struggled with many health issues. I had a kidney stone that had to be surgically removed, and then two months later had my gall bladder removed because it was chock full of stones. Four months later, I landed back in the hospital with another kidney stone. I continued to struggle with various health issues and was eventually tested for Cushings, which turned out negative. I struggled with hypothyroidism symptoms and was prescribed Cytomel (which is T3) in addition to the Levothyroxine to see if that helped better control my symptoms. Synthroid and Levothyroxine are only T4. Often, hypothyroid sufferers need both T4 and T3 to feel whole or “normal”. Because I had started the Cytomel, my endocrinologist wanted me back for a check-up sooner rather than later (see I told you she was a good doctor). She and I talked about the fact that she was certain I had Hashimoto’s, and we discussed the fact that I have Raynaud’s Syndrome. She suggested that when I come back for my next appointment, I should have an auto-immune work up done. I agreed that it seemed like a good plan, but I wasn’t totally honest with her or myself about everything that I should have said in that moment. I don’t have a good explanation for why. I’m good at advocating for everyone else, but perhaps not so great at advocating for myself.
Fast forward a month. I went for my annual physical with my internist. She was reviewing my entire health history (she is a very thorough doctor). She asked me why I wasn’t running anymore, and I explained that I had arthritis in my knee and toe. She pointed out that my chart showed nothing but chronic sinus infections. At another point in the discussion, I told her that my endocrinologist had asked about my Raynaud’s flare ups. It wasn’t long before she started questioning me and pushed me to be honest about all that was going on. It was a pivotal moment for me. She asked me whether I’d had rashes and whether I felt any other joint pain and many other questions. I told her I’d had rashes, but that I was a redhead and it came with the territory. She seemed skeptical. I realized that I had not been honest with myself or with anyone else about how terrible I had been feeling. I didn’t want to complain, because I felt as if I’d put my family through enough with the chronic health issues I’d faced over the last 2 years and felt as though everyone was tired of hearing what was wrong with Blythe today.
After a while, I began to confess all of the symptoms I had experienced, including the fact that I ached so badly that day I could barely sit on the exam table long enough to complete the physical. She sent me the next day for various auto-immune testing. The blood work came back positive for Sjogrens Syndrome – another thing I’d never heard of – but nearly all the symptoms on the list match up with what I’ve been enduring. I’m in the process of researching and learning more about it, because that’s how I make peace with every major issue I’m ever confronted with. I research the hell out of it. I am being referred to a rheumatologist for further testing and to rule out other auto-immune diseases. I feel good about the care I’ve received thus far. I’ve learned a lesson about the importance of being honest with my doctors and not ignoring symptoms. I’ve learned the value of persistent and thorough doctors, particularly internists who can see the big picture instead of just pieces.
So, what Hashimoto’s has meant for me is that it was a flag that was being waved – only to be noticed by the best and most attuned doctors. For those that think hypothyroidism is just a simple thing that is cured by simply taking a pill, you are wrong. Thyroid disease is much, much more than that. It affects every single day of my life. For those of us with auto-immune “versions” of thyroid disease, it’s simply one piece of a complicated puzzle. However, were it not for my thyroid disease, I’m not sure how long the other issues would have gone unnoticed and undiagnosed. So perhaps in some strange way, I’m thankful for it. I’m thankful that my experiences with hypothyroidism make me a better mom to my hypothyroid children. My journey with thyroid disease is a complicated one in many aspects, but I hope that by sharing it with you, I bring you some sense of peace and comfort and of not being alone if you are walking a similar journey or climbing a similar mountain.