My appointment with the endocrinologist was set for September 19, 2005 at 2 pm. It was a woman and from what I had read she had a lot of credentials. She seemed to be well thought of so once again I had high hopes that I would finally get some answers as to while I continued to have high Tg after 3 rounds of radioactive iodine. Since I had reached my maximum lifetime dose of RAI I was also looking to line up a team of "experts" just in case I had a recurrence. My Tg had been 8 at my August appointment but you never know.
My mother agreed to make the trip with me on the day of my appointment. That was nice because it was a 2 hour drive to the University Medical Center building. It's nice to have another set of eyes to help you find your way as well not to mention the moral support. I went armed with my medical records in a 3 ring binder and my nuclear medicine scans from each RAI treatment.
I met with Dr. D and she was very nice. She seemed interested in my condition and listened to what had transpired through my treatment. She did a physical neck check and we talked for about an hour & 1/2. At one point during my appointment she left to take a call. She was gone for about 1/2 hour. Now I felt that was incredibly rude! She appologized when she came back but still. I made an appointment to see her during that time. After much discussion she told me that she would review the records I had brought and would issue her opinion in 1 week. I thanked her and my mom & I left.
On the drive home my mom & I talked about what she had said and in some ways we had learned a few things but in many ways it was the same thing I had been hearing from the last two endocrinologists I had been seeing. I wondered if there were any answers. So I continued to work with my naturopath and kept my appointment for January with my current Endo.
After weeks had passed I received an envelope in the mail from Dr. D at the Univ of MI. It was 5 weeks past the promised date. By this point I had decided that I would not be seeing her for anything further. I had called on two occasions during the week time asking about the status and each time was told it would come the next week. I was not impressed.
I tore the envelope open to see what had been written on the 3 pages of Out-Patient Notes. The first page & a half described my treatment history. The next 3 /4 of a page was a description of my current health status at the appointment and what vitamins I was taking. This was a major disappointment. I knew all this information and now I had gotten 2 1/4 pages describing my life. The final 1/3 of the last page of the document was the following:
My impression at this time is that Stephanie B. has:
1. Iatrogenic hypothyroidism
2. Thyroid cancer, papillary (1.8 cm) with nymph node involvement
3. Status post thyroidectomy x2
4. Status post radioactive iodine ablation with a total of -300 mCi per day of radioactive iodine.
We had a very long discussion regarding her care. The patient requested that I review her chart, which took me some time to complete, and I have done this, but it is still unclear whether her intention is to follow up at this institution with her thyroid or just have another opinion regarding her thyroid gland treatment.
She had quite a bit of radioactive iodine ablation and the risk of side effects/toxicity from radiation therapy increases with repeated administration.
What remains unclear is why she has persistent thyroglobulin levels, despite a fairly high dose of radioactive iodine as well as surgery. Despite these therapies, she continues to have measurable amount of thyroglobulins. We discussed this issue.
At this time, if indeed she does intent to follow up in the clinic here, I would recommend referral to the Nuclear Medicine Division where they administer radioactive iodine and complete further therapy. She may benefit from other imaging modality such as a thyroid ultrasound, CT/MRI of the neck or PET scans. In the interim, she should maintain a suppressed TSH.
So there you have it. Again no one knows why this continues to happen but they are all too happy to run more nuclear scans on me. No thank you. It felt like a wasted trip. At this point I did not know now much this visit would cost. I was told anywhere from $350 - 400. They also told me that my insurance would not cover it because it was out of network. It turned out that it was in my network and I paid $15.
