In my last blog, I wrote about calling my oncologist about stopping the drug Letrozole early. My endocrinologist had done a bone density test last month, and my scores were somewhat lower than in the previous test from a year ago. My osteopenia could be from being suppressed ( my TSH is essentially zero). The reason for this is that in my case, aggressive thyroid cancer and TGs elevated for over three years, my endocrinologist wanted to keep my TSH at zero so that there would hopefully not be any " call to action" of any thyroid cancer cells that I may have lurking around in my body. The standard of treatment now, it seems, is to allow the TSH to return to " low normal"- more around 0.5 or so. Of course every case is different, and there are cases that I am sure where the doctor feels like keeping the TSH at zero is more beneficial to the patient, as far as recurrence goes. That said, my endocrinologist feels like since it has been about 9 years since I had thyroid cancer, and about 6 years since my TGs were considered normal ( less than 1), my doctor feels like it is time to let my TSH get to low normal. I have also lost about twenty pounds since my last visit, so since thyroid hormone dosing is weight related, my endocrinologist lowered my dose of Levoxyl. I was taking 112mcg ( In the past, I had been taking up as high as 150mcg) but this time, she lowered my dose to 100mcg. There has been some adjustments , on my part, from lowering the dose. I was feeling fine on the 112mcg, but considering the osteopenia maybe turning into osteoporosis issue, I am trying my best to adjust to the new dose.
Speaking of dose adjustments, people who are thyroid cancer patients or those without a thyroid gland for other reasons, know how much just a tiny change in dose can affect your body! I am dealing with lower energy levels, being sleepy in the afternoons, even more cold sensitivity, as well as a little more brain fog. ( as if I needed more of THAT). I am not whining, I just wish more people understood the challenges of being thyroid-less. That little gland, a little monster in my case, controls the entire body- in some way or the other. I am thankful for thyroid hormone replacement drugs, but it certainly is not an exact science when it comes to dosing for optimum health benefits while minimizing side effects.
On a related issue, I did hear back from my oncologist concerning stopping my Letrozole a little early. My endocrinologist sent my oncologist a copy of my latest bone density test. With that information, along with the knowledge that I have a good BCI ( breast cancer index test- it measures the possibility of recurrence of breast cancer) score, my oncologist told me that I could stop the Letrozole!! Yippee! Quality of life is an important issue- and I am already feeling a little bit better. Some of the side effects from the Letrozole are slowly going away. It takes a long time for this drug to leave the body. And some of the side effects may be troublesome for some time. I am still very happy overall, and I hope that my bone density test in two years will be a bit better.
At my next big thyroid cancer checkup, which is in April, I will be getting the usual blood work and office visit, but I am also scheduled for an ultrasound of my neck area. Just writing about this makes me anxious! Test anxiety is tough, as any thyroid cancer patient is well aware of. But I am thankful that my endocrinologist takes such good care of me.
On another related issue, I will be seeing an ENT specialist soon. I had trouble with salivary stones after the large dose of RAI that I received after my thyroid and two parathyroids were removed. It was most intense a few months after the RAI, but I have continued to have issues on and off since then. A few months ago, I noticed a lump in my parotid salivary gland on one side of my jaw. The lymph nodes under this area are also a little enlarged. When this has happened in the past, it has gone away after I did some self care- warm compresses, sour candy, sour lemonade, massage and ibuprofen for pain. The lump and swollen lymph glands have not gone away this time. I had a visit with my PCP and he recommended that I see an ENT to try to see what is going on. This requires a referral, and a little red tape it seems. I will keep everyone updated on what happens. If there is anyone out there who is struggling with this issue, too, I hope that you will see your doctor. I have been told that 85% of parotid " tumors" are benign, but most have to be removed because they can affect the facial nerves. RAI- the gift that keeps on giving...
