Three years ago, I was diagnosed with thyroid disease... almost two years ago I finally sought treatment. There were a lot of reasons for the lapse in diagnosis to treatment none of which were the absence of symptoms and very much an encounter with the wrong set of medical professionals. That's a story for another day, but I did go for treatment and have in the last two years gotten the disease, for all intents and purposes, under control. What that essentially means is that my thyroid tests are now within a normal range for an extended period of time. What it doesn't mean is that I'm symptom-free and what I have learned is that to the medical professionals it doesn't mean I "feel good."
And, in the last several years, I've read as much research and alternative treatment options for my particular autoimmune disorder (which is the most popular of the thyroid conditions). I've tried supplements, acupuncture, massage therapy, various diets and exercise. You may recall that recently I switched ago to a mostly vegan diet (for those wondering after that last post, yes, I gave in and had some fish and I actually felt 100 times better afterward) for health-related reasons. It has been truly the only thing that has helped abate the symptoms--energy has returned, fatigue has diminished dramatically... among other things, it's been a positive experience.
Just over a year ago, I went for a baseline ultrasound... now, I have to say here, I've had pelvic ultrasounds where they cram a cold wand against your full bladder for 20 minutes--I'd rather have that than the thyroid ultrasound whereby the cold wand is crammed into my neck for 20 minutes. Last year, a few hours before I was presenting at a conference my doctor called me to tell me that I shouldn't be concerned (hint, when your doctor starts a conversation with this statement, be concerned) BUT my ultrasound had come back with some "growths" and I would need to go for further tests. This growth, or nodule, as it is called had further testing and all indications were yes, it was benign and required continued monitoring. A few weeks ago, with me feeling a thousand times better than I had in years went for my follow up with my (now third) endocrinologist who surprised me with an ultrasound. It was time again, but I had conveniently forgotten.
The thing about Hashimoto's thyroiditis is that there is no cure, there is only a lifetime of maintenance medication and the hope that you can slow down or even mostly stop your body from attacking itself. For all the research I've read and all the information I have you still want to believe that feeling good and sticking with a diet that friends and family consider inconvenient and others in conversation degrade without pause, I somehow had myself convinced that this was making a difference. Yes, I feel much, much better and many symptoms have greatly diminished, but because of that, I also let myself believe, without medical basis, that somehow, this was also having an impact on the disease itself in my system--that if at anytime they tested the antibody count it would be getting lower than growing.
On Tuesday I got a call from my doctor. I'd thought earlier that very day that it was odd I hadn't heard from her yet since she'd indicated she was going to call the previous week with the results of the ultrasound, but we all get busy. Apparently she too had been busy, getting her colleagues at Penn Med to review my results as well. The other time to be concerned is when the doctor calls you and doesn't tell you to be concerned. Somehow, in my delusions above, I also had this hope that the rare case of the nodules getting smaller would be reported this time around--at the very worse, I expected everything would have been the same. So when she told me that there were now two nodules and the one had gotten bigger, I felt sick. Worse, I felt helpless against this disease. I'd spent so much time reading about the research, symptoms, prognosis that I got lost in it and typical of me, didn't allow myself to personalize it accept that it applied to me.
Three doctors agree, and I am accepting their collective opinion, that it is a wait and see situation... subject to continued monitoring and evaluation. My doctor told me all the things that would indicate I would need to come back in sooner--all the signs I've read about but never once thought they would apply to me. Somehow I managed to ask the questions I should ask when given this information, but I have no idea how--I was in shock. I was sad. I was angry. I wanted (if I was going to have them) standard nodules that didn't grow and certainly no new ones. I know I am supposed to accept it, but I find myself resisting; instead counting calories, amping up my workout to purge the calories contained in that granola bar I know my metabolism will probably punish my waist in retaliation. Somehow I managed to stop 30 minutes into the frenzy of tallying up the week recognizing that it wasn't helpful to the situation... and decided to write. Work on writing the current unfinished chapters that have been neglected since Tuesday. Work on writing here, where I swore I'd keep myself accountable.
2 days ago