Journey of a Thousand Miles — All Uphill
I don’t know where to begin, because my beginning happened during the worst week of my life. I had just lost my mother in July 1999. I was on my way home after closing up her house, when I got a phone call from my physician’s nurse, who said “your thyroid level is too high, it’s at 7, you need to go on medicine right away”. Confused, I did not know if it was a good thing or a bad thing that number 7. So I made a doctor’s appointment when I returned to talk to my primary care physician. He said to me that my THS level was a bit high and that I had become what was called hypothyroid”¦which I learned meant that my thyroid was not producing enough hormone. I asked him then why the high number”¦and he explained “the higher the number the lower the thyroid function”. Those words I still remember from that day forward.
Two years later, I had a serious car accident. The paramedics found me in the passenger seat. I had no broken bones, just intramuscular bruising. But when they took x-rays, they found an enlarged right bottom rib, but could not explain it. Eleven months later, I was diagnosed with kidney cancer. Thinking that my hypothyroidism was a curse, I was facing an uphill battle with cancer at the same time. I always wondered if the slow thyroid caused the cancer, but the doctors never told me. In December, 2001, the tumor and my right kidney were removed.
For years after my cancer surgery, we have still been battling with hypothyroidism. My “numbers” would go from 7 to 2 back to 6 then down to 1 back up to 5 then down as low as 0.5. Fighting with my doctor, who kept on saying that 3, 4, 5 were “normal” numbers, but I still experienced the same old symptoms, the lethargy, the weight gain, and so many others. My doctor kept on disagreeing with me. I was on brand named Synthroid, then generic Synthroid. Over the years my dosages were adjusted, Cytomel was also added with the Synthroid, but the last time my prescriptions were increased because I had such high levels, and I got my lowest levels ever. When it was at 0.5, I was very hyperactive, couldn’t stop doing anything, my hair was starting to drop out and I didn’t know why. When he got that test result, he consulted with his endocrinologist in his office and immediately took me off that dosage of generic Synthroid and Cytomel, and put me on Thyrolar-3. For a few years, I was good”¦.still tired, but good.
Then something else happened”¦.my pharmacist gave me bad news. Thyrolar-3 was no longer available. That felt like the sting of a bee. It had been working, but now we had to find a different solution. My doctor put me on Armor, and my tongue and throat swelled shut. Then my doctor had no other option but to put me back on generic Synthroid and generic Cytomel (the prescriptions said generics allowable). My levels went up and up. I got the last results from his nurse, who said, “Your blood work is fine except for your cholesterol,” which told me nothing. I had to be proactive. I asked what my TSH number was and she said 6.7 and I said “He said that’s fine?””¦and the nurse said “well, that’s what I was told to tell you”, and I asked to make an appointment with my doctor. Last Thursday I sat down with my doctor and we had a long hard chat on all of my bloodwork to see how I am doing. My thyroid levels are too high, although he said that “too high” in his opinion is 20 or 30. Wait, 20 or 30?!! You told me that I had hypothyroidism when my level was at 7, now you are telling me that my thyroid is okay at close to 7 on medication”¦.what the heck????
He increased my Synthroid, made it name brand only, and I found out that I am on generic Cytomel, and that I can go on brand specific Cytomel as well, so I am doing so. I am giving this three months. If this doesn’t work, I’m asking for a referral to see an endocrinologist at the University of Pittsburgh Medical Center.
How (you all are possibly thinking) can you be staying with this doctor? He is not only my primary care physician but my pulmonary care doctor as well, and he is excellent in that care. If I would do anything, I would change and get a new primary care doctor, but I think the best decision that I would do is to see how this all works out.
August 1999 to June 2010″”I think I’m way overdue for an personal endocrinologist consultation. If my story does anything for you, please let it do this”¦take a proactive stance in your treatment, go to an endocrinologist as soon as they say the words hypo/hyper hypothyroidism.
If you learn anything from my story, I hope that you learn to be proactive with your and your family’s health. DO NOT DELAY”¦..Read all you can about your disease. Talk to anyone who has the disease or to any medical professional with a background in the disease. And get a referral to an endocrinologist as soon as you can, treat your illness with a specialist. This is a disease, not something in your head. It has a name, and it’s called hypothyroidism.
State College, PA
Tags: being your own health advocate, Dear Thyroid Letters, educating yourself about your disease, fluctuating TSH, hypothyroid, hypothyroid patient letters, hypothyroidism, kidney cancer, medical mistreatment of thyroid patients, proactive treatment for hypothyroidism and hyperthyroidism