It was in 2008 that I was first diagnosed with Graves’ disease. This diagnosis was determined based on a single number, the TSH level. Today, I now know that this is like diagnosing a patient for a disease and prescribing medicine by simply taking a patient’s temperature or reading the back of a book jacket and assuming you no longer have a need to read the book ... ignorance is not always bliss. But nonetheless, this was the only blood test administered to check for thyroid imbalance. This diagnosis was followed by multiple pills as well as multiple changes to the dosages to achieve a “normal” level. These pills were prescribed for two years at which point my MD felt the Graves’ had stabilized and I would just continue on being “normal” without the aid of any more pills. Wow, that was impressive. He had cured me.
In September of last year, I had another test because I had not been feeling well and, all of a sudden, my same MD was dragging me upstairs to an endocrinologist immediately. Does this mean I’m not “normal” anymore? Well apparently the fact that my same TSH level was so hyper that it was not even registering on their tests, was a huge concern. So much of a concern that the endocrinologist added in two additional tests – T3 and T4. And she threw in a few cardiac CT scans to check for damage to my heart due to the severity of the Graves’ and her perception that this had been going on for many months. However, it was still my TSH level that remained off the chart, literally, that prevented any type of procedure to eliminate my thyroid until finally March of this year. Of course from September to March, I was on the maximum dosages of meds.
The follow-up to destroying a thyroid involves more tests for, you guessed it, the TSH level. The results of these tests led to numerous adjustments in dosages, as well as a transfer to different meds during this process ... all with that goal again to get me “normal”.
In 2008, the extent of my own research about Graves’ Disease was a few pamphlets my MD had handed me with my pill prescription. In 2012, I was actually scared as I knew my MD’s reaction was not a typical reaction to a simple blood test. I started to research as much as I could, while trying to maintain some sanity as I read about so many severe and heart-wrenching experiences with this disease. Many of these stories were as a result of Hashimoto’s thyroiditis, which is typically viewed at the opposite side of the thyroid diseases ... Hashimoto’s to Graves’ – the hypo to the hyper.
In the midst of all of this, I began to understand everything I had not recognized in what seems like forever now. I had checked out of my life and the lives of those I care for and love. I now see the radical behavior, the excuses, the retreating, the emotional rollercoasters, the mental anguish, the just crazy reactions – all of which are so much more debilitating than any of the numerous physical ailments associated with these diseases. And the worse thing was that I didn’t recognize any of this while in the midst of this horrible spiral and what’s even more heart-wrenching is that those who loved me the most tried to tell me this the most. I know just how sick I was, I am, because I know in my heart that I am not the person that would or could ever watch the people I love most hurt and beg for my attention, for me to merely turn my back and retreat. But I have learned from all of those expressing their deepest feelings within these sites that you truly cannot know what these diseases do to a person until you have taken our pills, laid awake at night because you can’t sleep despite the fact your mind and body are numb, felt your heart beat through your chest, your weight fluctuate 50 pounds up, then down 30, all while people are accusing you of being lazy, aloof, crazy, depressed, overweight, uncaring and the list continues.
If any of you have ever been unable to describe your mood or mindset and just simply state that “I'm just off today and I don't know why” ... well grab a calculator, multiply your “just off” by a big number, then by 24 hours a day, by 7 days a week and finally by 365 days a year ... and you may be able to experience a day that most of us with thyroid disease have each and every day.
And the fact that I was able to finally recognize this and because I have incredible family and friends that care for and love me ... I removed the flight response that had run my life for the past few years and decided to fight back. My fight began by sharing my stories with others suffering with similar experiences. It started as therapeutic for me, but to my surprise it became much more than that – it became fulfilling and heart-filled when others began to respond with gratitude for “telling their story” too. Because you see, misery does not always love company, but it is my hope that an inspired fighter can love company too.
While my MD was done with my process after frantically dropping me off with the endocrinologist, the endocrinologist is only a few TSH blood tests and perhaps one or two more dosage adjustments away from being complete with my process as well – aside from the lifetime prescription of a little white pill – synthetic thyroid hormone.
However, I now have a thyroid specialist on my side. His interest in this specialty grew immensely when his wife was diagnosed with severe Graves’ disease, which ultimately caused her to be bedridden for two years and nearly took her life. Because of this firsthand knowledge, I find great appreciation and trust for this doctor – for if it was good enough for his wife, it certainly is good enough for me.
It all started with an evaluation in which I immediately perplexed him in that I identified all of my symptoms – which included nearly each and every one listed on the form. What was perplexing was that some of these symptoms were unique to Graves’, while others were associated with Hashimoto’s. I certainly could not be experiencing all of these symptoms. Well, I quickly learned that I was no longer in the classic medical establishment. I went to the clinic for his ordered blood tests and the nurse asked if I would like to lay down – for one vial of blood? Seven vials of blood later and I understood why.
Just prior to receiving my blood results, my doctor remarked that he was shocked that I had not been bedridden, a non-contributing member of society or spent my days in the emergency rooms of my favorite hospital. These thoughts were only confirmed last Thursday.
It has taken until tonight to wrap my mind around our conversation last Thursday and perhaps it was our afterhours meeting last night and all of my questions and his answers that allowed me to finally sit down and put this whole experience into words.
Well, that perplexing initial evaluation is no longer perplexing. The reason I felt that I had all of those dual symptoms is that I do. I actually have two chronic autoimmune diseases, and I am currently on the verge and at high risk for a third. I have Graves’ disease, Hashimoto’s thyroiditis and I’m currently at high risk for Type 1 diabetes. It took seven vials of blood, two national blood laboratories and 20 pages of test results to finally see the true cause of my deep spiral. How can I have both when one suppresses the thyroid and the other makes it overactive? How can these two co-exist? Well, they result in the worse of all conditions as not only do I get to experience symptoms 1-50, but I also am able to experience symptoms 51-100. It is that swing from #1 to #99, back to #25 and back up to #74 ... in an hour’s time that now leaves me perplexed as to how I actually am still upright and how I remained, for the most part, upright last year – at least physically, while mentally is another issue. To cap the evening, my doctor ran across one number that I think caught even him by surprise, which I learned earlier from my MD is not typically a good sign. My TPO number, which is a measurement of the TPO antibody levels and is the most sensitive test for detecting autoimmune thyroid disease, is the highest he has ever seen in his years in practice. So my takeaway from this meeting: I knew for years I had Graves’, which ultimately became quite severe, but now I also have the most severe form of Hashimoto’s and I’m at high risk for diabetes. I’ve certainly had better nights.
The fight may have just gotten more daunting and the opponents bigger, but it’s a fight worth fighting. For you see, there are many people out there who do not have the love and support that I have, nor the resources and opportunities that I have in regards to medical care, whether it be traditional or alternative care, and if I give up, what message does that send to those with less in their corner to assist in their fight? And finally, these diseases took the most important thing in my world away from me and I will not forget that. I’ll continue to fight until I can prove that these diseases will never beat me or take away who I am ever again.