On March 8, 2001 I returned to my endocrinologist office for a 1 month follow up post ablation. The doctor asked how I was doing. I was soon to find out that this was just a courtesy question. I told him that I was tired and achy and still did not feel well. He told me that my TSH was suppressed and there wasn’t anything he could do for me because I was where I should be. He said that the way I was feeling could not be related to thyroid and was probably “female” related. His abruptness hurt. I suppressed my tears once again until I reached my car and then let the tears flow. Why didn’t anyone care how I felt? It wasn’t in my head. I had maintained a very busy lifestyle prior to my diagnosis. I was a very busy computer consultant who traveled all over juggling up to 4 clients at a time. Now it was all I could do to get up in the morning and fix breakfast for my son and then crash on the couch and eagerly await naptime so that I could sleep again. I was gaining weight while eating very little. It was so depressing.
I decided to contact my OB/GYN regarding how I felt. He agreed to test my thyroid levels and adjust them as I felt necessary in an attempt to make me feel better while I figured out what to do next. I had an appointment set for July with my endocrinologist. I wasn’t sure that I wanted to continue to see the endocrinologist. I just wanted to find someone who would help me. Someone who believed that I still wasn’t well. It’s not in my head.
I began to ask around to family and friends. Did they know of that was a good endocrinologist. I thought that this was the only type of doctor that could manage the thyroid cancer. One of my girlfriends mentioned that she had started seeing an endocrinologist because her doctor had transferred to a new location and had referred her to this new endocrinologist. I asked her if she like him and she said that she had only seen him a few times but liked him. She said that he seemed nice enough. Well nice sounded good after the nightmare I had just been through. Since I had no intention of going through RAI again and was convinced that the endocrinologist I had been seeing knew what he was doing no matter how big a jerk I felt comfortable in switching to someone with less “experience”.
I discussed it with my OB/GYN and he said that he would give a referral to this new endocrinologist. He had checked with the doctor he knew but his wait time was 4 months out and his specialty was diabetes. So I contacted the 2nd endocrinologist’s office and made an appointment for June 22, 2001. It seemed like a long time away.
I continued to feel worse during this waiting time. I just could not regain my energy levels. I tried to lose weight and it was very difficult. It was discouraging. I could breathe something fattening and the weight would come on. I was eating virtually nothing. I tried the Atkins diet but always craved the carbohydrates and would go back to the way I was eating. Knowing what I do now I was not eating well at all. I was consuming lots of comfort foods – refined carbohydrates and sugars, quick from the box and take-out.
On June 22 I went to my first appointment with my 2nd endocrinologist. He had come from Mayo Clinic which was impressive to me at the time. He seemed nice and was willing to listen to all my concerns. I reviewed my medical history to this point. I told him that I was discouraged because the previous doctor wouldn’t listen when I said I didn’t feel well. He would tell me that I was “suppressed” and that was the end of the discussion. This new doctor told me that he was willing to help me adjust my dosing based on how I felt. He ordered lab tests and told me that he would let me know how I was doing. When my labs came back my Tg was at 10.8. This was a HUGE improvement over the 346 that had been tested in January prior to my 2nd RAI so I was encouraged. This endocrinologist told me that this number would probably come down in the next few months. My next appointment was set for September 14th.
I was starting to feel better by the time I returned for my 2nd appointment. My labs were run prior to my visit so we could discuss the information at my appointment. My TSH was 1.5 and my Free T4 was 1.1. The Tg (cancer marker) was down to 4.4. The doctor told me that he was pleased with this level. He said that as long as this level stayed below 5 he would be happy. This was wonderful news. It seemed that for once in this journey that things were changing for the better. We discussed that I wanted to get pregnant again and he agreed that it would be OK if I tried. I was now almost 36 years old and I did not want to wait much longer. My husband was 41 so we were not getting any younger. I had read that post thyroidectomy and RAI it may be difficult to get pregnant which is another reason why I did not want to wait much longer. My son was now almost 2 years old.