Kathy’s Story

My “story” is sometimes a horror flick or an adventure in endurance and even a comedy that I just have to laugh about or I will sink into a pit of hopeless despair. As the days and years of my life pass by I am in awe of the amount of time that has been lost trying to find a suitable combination of thyroid hormone medication that will allow me to lead a somewhat normal life. But, here I am 32 years later and still searching for the elusive magic combo that allows me to thrive in life without a thyroid.

The first inclination that I was a unicorn was in 1988 when I had my physical for a marriage license. Back then you had to have a physical and a simple venereal disease blood test in order to get married. Well, my syphilis test came back positive and I did not have syphilis, I assure you. Our family doctor gave a brief explanation that some people test false positive but it was nothing to worry about, so I didn’t. But unfortunately, that positive syphilis test would come back to haunt me eventually.

At my postpartum appointment after my first child my OB noticed that my thyroid was enlarged and he referred me to an endocrinologist who said I had a goiter but that we would take a “wait and see” approach. I was fine with that because I felt ok and I assume my TSH was normal. Between my second and third pregnancy my family doctor at the time did some blood tests and found that my ANA was positive and that I had Hashimoto’s. He said that it was very common to have positive ANA and a lot of people do without incidence. At that time my doctor advised me to take Synthroid to shrink my goiter, so I did. I think he started me on 125 mcgs of Synthroid, which now seems high to me because I had a thyroid at that time but again, I trusted my doctor. After being on Synthroid for a few months I developed anxiety, so the next time I saw him he offered up Zoloft (SSRI). I just could not make friends with it and quit taking it after a few weeks. I had anxiety at that time but nothing to the extent that I have had it since. Also, there were things I liked about being on Synthroid. I lost a lot of weight after starting Synthroid and required less sleep, so those were huge bonuses for 24 year old me.

During my last pregnancy, 25 years ago, my OB/GYN did some additional blood tests at my first appointment and in addition to my positive ANA, I also tested positive for antiphospholipid syndrome and other Lupus markers. Scary stuff to be sure! I had been doing so many things that I shouldn’t have been with this disorder; smoking, taking birth control pills and others. A marker for antiphospholipid syndrome is a false positive syphilis test but no one had bothered to investigate my false positive test. I would like to add here that my symptoms were minimal at this point. Mostly anxiety, headaches and some joint pain was really all I had to complain about. I did get referred to a rheumatologist at this time but other than testing positive to all these terrible things, they said I didn’t have any obvious Lupus symptoms so I was dismissed. After those blood tests came back I quickly became a high risk pregnancy but ended up having a relatively easy pregnancy and a healthy baby.

For some reason my last pregnancy was like steroids for my goiter, which continued to grow and became more uncomfortable as time went on. It was becoming difficult to eat, swallow and even breathe sometimes. I lived with this obvious bulge in my neck for quite a few years until my doctor finally convinced me I needed to do something about it. I had two inconclusive needle biopsies and was referred to a general surgeon. I don’t really remember being given other options aside from surgery. My surgeon and GP both said that my labs would be more stable after surgery and that it was risky to keep my goiter, which was growing bigger every year. Without much thought or consideration, 16 years ago I had a total thyroidectomy and expected to take a pill everyday for the rest of my life. Easy peasy. My pathology report came back clean so no cancer was present.

For the next 12 years I took between 137-175 mcgs of Synthroid and did ok with the exception of achy legs, sore feet and feelings of dread and worry. It seemed like every time I complained about something to my doctor he increased my Synthroid and offered an antidepressant, which I declined at that time. I weighed 130 pounds and I had boundless energy. I kept up with 3 busy teenagers, ran my own business and lived a pretty normal life. I also refer to this period as the time of mystery illnesses. Overall I was living a normal life but occasionally I would get really sick with things that my doctor couldn’t figure out. I was tested for Lyme, West Nile, EBV and numerous other mystery illnesses. These episodes would take me down for 2 weeks to a month, with strange symptoms (extreme air hunger, fevers, headaches, pain in neck/base of skull). These symptoms would pass and I’d bounce back to my normal life.

For me, perimenopause was when things really started coming undone. Eventually, I developed full blown, debilitating, life changing anxiety; at least that’s what my doctor told me it was. Throughout all of this he only ever checked my TSH and was ok with mine being .01. After 3 months of horrible anxiety (panic attacks, agoraphobia, health anxiety), dizziness, headaches, neck and back pain and a 20 pound weight loss; I ended up seeing numerous specialists (rheumatologist, endocrinologist, hematologist, neurologist, ENT, chiropractor, naturopaths). I agreed to whatever tests they thought I needed, but none of them could find a connection between my symptoms and my positive autoimmune profile. Sure, I tested positive for antiphospholipid syndrome, lupus and have positive ANA but they didn’t think the symptoms I was having were related. I finally filled my doctor’s script for Lexapro (SSRI) and slowly things improved. I pushed on for a few more years with an undetectable TSH on 175 mcgs of Synthroid with Lexapro now onboard to counteract the symptoms of being overmedicated.

I probably would have continued down this path, but my doctor left and was replaced by a doctor with a little more thyroid knowledge. She at least had the wherewithal to run my very first ever complete thyroid blood panel. I had no idea it even existed, FT3 FT4 weren’t even on my radar. My labs came back with over range FT4 and low in range FT3, which I now know explains the anxiety and many of the other symptoms I was having. That complete thyroid panel was the jumping off point for a couple of things in my journey. It was the beginning of my roller coaster ride with “new to me” medications like NDT/Cytomel/ liothyronine. The addition of T3 has been a long and bumpy road that has resulted in many trials of NDT, more T4/T3 combos than I care to admit, brand name, generic, dye free you name it, I’ve tried it. I’m still learning and tweaking to find a therapy that I can live with. But most importantly that first complete thyroid blood panel in 2018 was also when I decided that I needed to be my own health advocate and learn all I could about managing my life without a thyroid.

Even though it’s been 25 years since my autoimmune disorders were discovered, I still don’t know how they factor into my health. I see a hematologist every few years and he runs a million blood tests and they all come back the same as they always do. He usually scratches his head and says, “you could take a baby aspirin a day if you WANT to”. (this would be as a preventative measure for blood clots) Living without answers is difficult but getting answers has proven to be almost impossible. I don’t know if I will ever be free of this monkey on my back. I’m always wondering, fearful and also hopeful that maybe it really is “nothing to worry about”.

Now, 54 years old, post menopausal; a wife, a mom to 3 adult children, grandma to two wonderful grandsons and I am still in this search for some normalcy. Thankfully, I now have a doctor that is current on thyroid treatment and is willing to be my partner in this journey. The oversimplified idea of just taking a pill everyday has long been forgotten. But somehow, through all of this I do feel more empowered. I’ve learned so much through suffering, through research, through examining my inner self and most importantly through my friendship with Darcey. She is my “all things thyroid” ride or die. She keeps me honest with myself and is usually my voice of reason when my voice is tired and broken.