Last week, I shared in a blog post, What are Endocrinologists Learning About Thyroid Disease, that Abbott Laboratories, the maker of popular thyroid drug Synthroid, is sponsoring a session at the upcoming Endo 07 meeting titled "Thyroid Hormone Therapy: Why Some Patients Are Unhappy." Needless to say, the idea of a group of endocrinologists getting together to tell each other why patients are unhappy, sponsored by the drug company that makes the product the majority of patients take, well...it seemed a tad ironic to me! The whole issue has triggered a furious response from one endocrinologist, and quite a bit of discussion among patients.
So, it seemed like an especially good time to put together our own virtual patient meeting to brainstorm what those of us who are in the trenches actually think.
This new poll, Thyroid Hormone Therapy: Why Are YOU Unhappy? looks at the real reasons patients are concerned. Does your medicine simply not work? Are you feeling worse than before? Is your thyroid drug too expensive? Are you stuck with one brand because your doctor or insurance won't allow anything else. Are you having side effects, like hair loss, hives, or worse?
Speak your mind, and let the doctors and drug companies hear about what's really making patients unhappy by taking the Poll now!
Endocrinologists (and most doctors) have become so arrogant as a result of their training, that they fail to listen to their patients. Many lack imagination and a drive to get to the bottom of a patient’s problem. They also suffer from “groupthink.” Two years ago, I finally came to the realization that whatever was ailing me would probably end up killing me and I’d never know what it was or why any of the many endocrinologists I saw didn’t seem bothered my inability to remember things, the constant fatigue that plagued me despite “normal” TSH levels on my 2.0 grains of Synthroid. I finally found a wonderful endocrinologist who listened to me, was compassionate, empathetic and wanted to determine why I was still suffering from symptoms of Hashimoto’s despite my medication. My participation in researching the potential causes of the problem had been met with such vehement contempt–especially when I had the audacity to suggest that maybe I needed some Cytomel (it was as if I was asking for crack)–but then I had to relocate due to a job change and the whole sordid process of trying to find a physician who would actually take time to listen and expend some actual effort to really think about what could be the problem began all over again. I was lucky. It only took me a year to find such a doctor in my new location. One simple blood test determined that while my T4 levels were on the high end of normal, my T3 levels were at the very low end of normal. The solution? A mixture of 75% levoxyl and 25% cytomel. What an enormous change! It was like I got my life back. He also determined that my serum iron levels were very low normal and was interested enough in recent research to know that very low, but normal, iron levels cause symptoms that are associated with chronic fatigue syndrome. Thankfully, I’m not one to give up easily and will get up and walk out of a doctor’s office, challenge their arrogance. They are not gods, but professional service providers and I am not just a patient, but a customer of those services. I will not be ignored or treated with contempt. My message to those physicians who find patients who won’t accept living life in a fog and find us a pain in the arse to deal with, find another profession. And, to the patients who encounter them, my message is make it known you deserve to be heard. Do not accept contemptuous treatment, take no for an answer when you ask to have a test done, and don’t give up. Don’t let anyone tell you it’s all in your head. Be a good consumer and do not keep going back to physicians who don’t treat you with common courtesy or the respect you would expect from anyone else you hire to provide you professional or other services. And to Mary, thank you thank you thank you for what you do for us.
What about people in my situation? My dr. will not prescribe anything except generic thyroid medicine for me (formulary for the health plan). I had a non-cancerous thyroidectomy. Now I am on a regimen of 75mcg levothyroxin only on Mon. and Thurs., with 88mcg on the other days of the week. Lab tests in a few weeks will determine if this mania is the correct dosage. Does anyone have any suggestions for me?