My visit to the Endo was a disaster. His ensuing letter, which I have just received, is a strange fabrication or he's seriously misunderstood me or deliberately chosen not to listen to me.
I was referred to the Endo by my consultant because of all the problems I've had with symptoms and with Levothyroxine. My target is full thyroid suppression due to thyroid cancer and I've had half my thyroid removed. I asked him for full thyroid tests including T3, he said T3 tests are unreliable so they are not worth doing, he also said it was because of its short half life. I don't take LT3, only LT4. If T3 tests are unreliable, then why did the hospital test them 5 years ago. What relevance does T3 short half life have to anyone not taking T3 replacement and why would it mean the T3 test was irrelevant for me?
I asked how I would know whether my symptoms were due to a LT4 to T3 conversion problem without a T3 test? He said it wasn't relevant to me because my remaining thyroid would be producing some T3. How does he know that my thyroid is effectively producing T3 when it is being suppressed?
In his letter, following the appointment he states that I was 'keen to persue T3 replacement and that it was inappropriate'. I had not requested T3 replacement at any point during the appointment. I requested a T3 test. How does he know it's inappropriate without testing T3?
He did not take a full history, he did not record that my main symptom was anxiety which is a known symptom of over-replacement. He did not review my blood tests and correlate them with my symptoms or the amount of Levothyroxine I was taking to achieve thyroid suppression when my symptoms were at their worst. He implied that my symptoms were not related to my thyroid without any basis of investigation or evidence to base his assumptions on.
He failed to record that I told him I was unable to tolerate the dose increase after my last blood test due to adverse symptoms. He has decided my dose should be increased to 150mcg which is the amount I couldn't tolerate. He has not given any helpful advice as to how, if I increase my dose to 150mcg I can manage the adverse symptoms and it didn't occur to him that my symptoms could be a hint that I might not be able to tolerate full suppression.
All in all, I'm horrified that he has made judgements and decisions about me without taking a full history, reviewing blood tests in correlation with symptoms and doing full evaluation of my thyroid status with blood tests. I thought medicine was supposed to be evidence based? I'm shocked!!! I'm also scared that I'm not getting the advice and support I need to reach full thyroid suppression or manage the symptoms of full suppression. I'm also scared there is some other problem that he has not investigated.
What should I do? What should I expect from an appointment with an endocrinologist? Is this the norm? Should I complain? What have other people experienced?