I had Graves disease when I was 22, had RAI I-131 treatment a year later, and started on levothyroxine 17 years ago. I was finally referred to the hospital near the end of 2014 after 15 years as I felt like I was dying and it would take me nearly an hour to just get out of bed.
I managed to see a GP registrar (who refused point-blank about any talk of trying T3), another consultant (who placed me on T3 trial - I will call him Dr. L), the head consultant whom I saw twice in a row, but was seen by another consultant on my last appointment last year August. My husband was with me at the time, and I was so unhappy with this consultant as she did not give me any chance to talk about either my blood test results or the symptoms that I was (stiil am) experiencing. She told me that, "any symptoms you are having does not have to do anything with your thyroid." She had this 'I am the doctor, you do not know anything' attitude, and the whole experience left me shocked and even more confused. My husband was livid and we went to the patient liaison officer (with some reluctance on my part) and lodged a complaint.
Unfortunately, I was not able to meet with the head consultant to talk about what happened as he was (and I think still is) off work, and the consultant Dr.L, who prescribed me T3, asked me if I wanted to be referred to a consultant at another hospital. I agreed, and I received the appointment letter from the other hospital last year December.
Fast forward to my GP appointment early last month, and she printed out a copy of the referral letter that Dr. L had written to the consultant that I will be seeing tomorrow. He had written that I was not happy to be looked after at the previous hospital, and he even denied seeing me. I explained to my GP what had happened last August, and I saw that she was shocked as well about it. My GP told me that I should really write down what I want to say to this new consultant, but I do not want to start off at the wrong foot.
I make sure, that before going to any appointments, I have a list of all the medicines and supplements that I am currently taking and I will be bringing my copies of my blood tests done last September and November. I am no doctor nor do I claim to know what is going on, but I sensed that some doctors do not like that a patient is aware of their health condition.
I have tried (in vain) to ask to be tested for thyroid antibodies, with the head consultant telling me during one visit that because I had RAI, I wouldn't have any left, and then on the next visit, he said that I have antibodies because my thyroid eye disease was beginning to become even more prominent again. A GP tested me for TBII (TRAB) back in 2015 and I found out later that it was a test to help diagnose Graves disease (?)
I have rambled on for too long. Thank you for taking the time to read my post. I do not know where else to turn to and this anxiety has been doing my head in.
Any advice will be greatly appreciated.