Last year I was diagnosed with Graves Disease and Hyperthyroidism. I also have two suspicious nodules that my endocrinologist fears are cancerous. Apparently, I have had Graves Disease for a long time, but hadn’t diagnosed until my new general doctor put all of the symptoms together and had to be tested.
I started seeing an endocrinologist and was put on medication. I am still seeing her regularly and am about to take a bunch of medical tests to figure out if they will kill my thyroid or if it needs to be removed. So far they are leaning towards making me nuclear.
Since I’ve been on medication for the Hyperthyroidism, some symptoms have disappeared, some have gotten better but are still present, some haven’t changed at all and others have become worst. I began to wonder if what I was going through was “normal.” I wrote down my observations and presented them to my doctor. She ran more tests to make sure I wasn’t having a reaction to the medication and to make sure the hyperthyroidism was stable. Once the results were all in, she decided to send me to see a rheumatologist stating that she believes I may have more than one autoimmune illness which happens in patients who have been living with Graves Disease for a long time.
I was both happy that she was taking me seriously and taking steps to help, but meeting another doctor, I was so afraid to be labeled as “drug-seeking,” “attention-seeking” or a liar.
The rheumatologist did say that I was A-typical, but it does happen in their field of expertise. She also wants to write off that these symptoms might be caused by Graves Disease, as even though the thyroid is showing a stable result, sometimes those results are deceiving. She also wanted me to run a few tests for muscular dystrophy since my lower limbs are weak and an electrocardiogram, plus a bunch of blood tests. In addition, she asked that I keep a journal and write a detailed account of each ache and pain, each inflammation and skin anomalies. In a few months, a board of doctors would then go over all the results and my journal to diagnose me.
Two strong negative feelings have come up during since starting this journal exercise: self Doubt and the feeling that I’m complaining/whining all the time. I don’t like it.
The pain is real and it is constant. Some days I can do many things, other’s I have trouble walking. It can be really debilitating on bad days and lately, I’ve had more than my share of those.
The problem is doubt never really leaves you. I am still afraid to be labelled as “drug-seeking,” “attention-seeking” or a liar. I wonder if the doctors will be able to find out what other chronic illness I have on top of the one already diagnosed and I also doubt myself. I wonder if I am overreacting. I wonder if I’m missing an important clue that could help the doctors figure things out. Some days when the list of pains and aches is long, I begin to doubt the believability of the story I’m telling. Will they think I’m exaggerating? Is my observing and taking notes in such details making me feel worst? All these things are called into question.
I go to bed at night unsure of whether I will wake up feeling rested and comfortable (which is unlikely) or exhausted and in agonizing pain. I modified my Bachelorette plans so that that I could still participate if I’m in a lot of pain that day. I took two days off prior to my wedding to make sure I am well rested and can walk down the aisle. I am planning to take a lot of pain pills so I can dance a bit too. We booked our honeymoon and the worry that I will be in too much pain following the wedding is always at the back of my mind.