I have recently hit some road blocks in my quest for further diagnosis and treatment. I was FINALLY referred back to see an endocrinologist (thank goodness), which I have been trying to do for some time. Which is awesome, don't get me wrong. But on the list of things that are NOT awesome, the top two things are 1) the fact that it took a MONTH for my PCPs office to fax a referral as well as office notes to my endocrinologist, as well as 2) the fact that I cannot even be SEEN until the end of December. Don't get me wrong, I understand more than the average person that doctors are busy people. That's fine. But December is ridiculous for such a small practice to not see someone, especially since I am a previously established patient!
So since I am getting ready to see my PCP and cardiologist in the next two weeks I have been putting back together my novel entitled, "Thyroids suck: The Brief Medical History of Alana." Doing this has uncovered some interesting things which is what inspired my thyroid care rant. To make it easier to read I have decided to break this all down in to bullet points.
- My previous PCP ran a blood test in March 2013. I still have the copy of my paperwork that says he would order a complete metabolic panel, as well as a full thyroid panel. After looking at my copy of the results, ONLY a CBC and a partial thyroid panel were run. I had received a call results were all normal. However, they were flagged abnormal. My CBC showed a low RDW (red blood cell distribution width), and only my TSH were normal. My FT3 was high, and my FT4 was low. Personally, I do NOT agree that that is "normal."
- Also while going through paper work, I have had thyroid panels now run at three different doctors offices, all which use different labs for results. Some lab results which are normal in one of my doctors offices, are abnormal in a different one. Which simply does NOT make sense to me. WHY is there no standard lab values established for thyroid blood tests? Shouldn't that be one of the first things established?
- My initial blood tests showed me not only having off the chart hyperthyroidism, but some other abnormal stuff in my complete metabolic panel run at that time, the most important of which being a high T bilirubin level. Bilirubin is something produced by the liver to help with the break down of hemoglobin as well as drains from the liver and is excreted through urine. Elevated levels of bilirubin can indicate things like gallstones but can also cause an acid build up in the stomach, which can later cause issues such as gastritis and GERD (gastroesophageal reflux disease). I was just recently diagnosed with GERD.
- One issue I saw when going through the screening and initial diagnosis process was that most people are not screened for, checked, or talked to about thyroid disorders. Most thyroid disorders become present in females between the ages of 16-25. When you have physicals as a teenager? Did you ever have your neck checked, or have a thyroid blood test? No? Me neither until I had a massive adenoma tumor present. I often wonder if in that yearly physical if I had been checked and screened for a thyroid condition, if it could have been stopped before it got to such an extreme state.
- There are some thyroid problems that cannot be seen in a blood test, like the under conversion of thyroid hormone T4 to T3 and thyroid resistance. For the under-conversion issue, inflammation and high cortisol is usually present, but cortisol is NOT a normal thyroid function test. For an under-conversion issue, patients present hypothyroid but with normal lab values, therefore, no treatment is received. For a thyroid resistance problem, there is NO WAY to test for this. All thyroid and pituitary glands can be functioning normally and every lab marker will be normal. So how can anyone know if they have either of these? I didn't even know these two things were possible until I did lots of research pre-thyroidectomy.
- Another issue along the lines of close-minded medicine, is most conditions can generally be handled and controlled with natural methods, rather than normal medical treatments. For instance, most hypothyroid patients are treated with synthroid alone and do not even know that natural thyroid treatments such as ArmourThyroid. Synthyroid is NOT the bio-equivalent to the main thyroid hormone, thyroxine. In this case, a blood test can be normal, but symptoms of the patient can be increasingly worse or uncontrolled, but since the blood test is normal, you get the "oh well, deal with it" response. (something known all too well to thyroid patients in my opinion.)
- To close out my rant, I think this is my BIGGEST problem with thyroid care in the United States: doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. Doctors treat the numbers, not the symptoms. I cannot say it in any other way. It should always, always, ALWAYS the PATIENT that is evaluated and treated NOT a collection of numbers, which doesn't mean anything without the existence OF the patient. And beyond this, every patient responds DIFFERENTLY to thyroid treatments. Why is there always only a one way, single seen way to treat where everyone seems to have blinders on?
Okay, I think thats all I have for now. I get very frustrated sometimes. Especially right now since no one seems to be listening. Who knows a patient's body better than the patient? I think, in any matter of medicine, the patient needs to be taken more seriously, and physicians need to know and acknowledge, the patient knows the patient's body the best.
