1 year + 6 months + 3 weeks - Post Lemtrada
May 11, 2021
I guess I missed April...here's what happened: I had an appointment with my endocrinologist; three rounds of monthly lab work; Texas had a small Covid spike; failed a hearing test; followed up with my ENT; got my daughter vaccinated; got a bunch of rain and lots of weeds and lost a friend to cancer.
Months keep pushing by; my daughter graduates from high school in less than a month. I had to send a baby picture and current picture to the school. Man, time just flies. Since she's 18, we were able to get her vaccinated. She got the Johnson & Johnson shot; she had a low grade fever and felt achy for a couple of days then she was fine.
The appointment with my endocrinologist went ok. My TSH is still really low and almost 0. My T4 was on the high end of normal and my T3 was slightly higher than normal. She took me off my thyroid medication completely and wants to recheck me in June. I get my TSH checked every month as part of my Lemtrada checks; she'll also check my T3 and T4 again in June. Apparently, it takes 8-12 weeks to see the change from the medication. I asked her "when does temporary become not?" and she said as long as I am not experiencing symptoms of hyperthyroidism then she believes it's just a temporary condition from the Lemtrada.
All of my other labs have been fine and I just got the results of my last round today. My Lymphocytes are stuck. Just when I thought I was noticing a pattern. For the last five months, the number has been bouncing between 1320 and 1590 cells/uL. I haven't broke 1600 yet. I have a follow-up with my neurologist next month. I am sure he's going to say that happens.
I mentioned in my last post that the texas governor had lifted the mask mandate. The state had a rise in cases right after but it came down again quickly and leveled off. Leveling off of course is still thousands of new cases a day.
I think I mentioned in another post that this whole journey started when I got a MRI to make sure that the hearing loss in my left ear wasn't anything physical. It's not but the MRI showed active lesions on my brain which led me to a new neurologist then to Lemtrada. Over the last couple of months I noticed that even with my hearing aid in, I was asking people to repeat themselves more. I got a hearing aid in December of 2018 for my left ear and now I am at a hearing loss level that I could get one in my right ear. Nothing like getting hearing aids to make you feel really old. 👵 I had a followup with my ENT last week. He's not going to order more scans since the first MRI didn't find anything physically wrong and both my ears lost hearing at the same pace this time around. He also mentioned that I could get a hearing aid for the right ear if I wanted to. I am going to wait and see what my follow-up hearing test shows in September.
In central and southeastern Texas, we are prone to flash flooding. We get in these weather patterns, especially in the spring and fall where we almost continuously get pounded by heavy rain and storms coming up from the gulf. We got into one of those patterns at the end of April and the first couple days of May. My cheap little rain gauge which I know isn't very accurate said we got 4 inches total; 2 inches on Saturday the 1st. San Antonio and areas east of us got 5-6 inches just on that Saturday. There was also a tornado touch down over there. I know there was localized flooding but I didn't hear about anything wide spread. Good for our poor frost bitten plants but also good for weeds. 🙄
Finally, I did lose a friend last month. We had been pretty close for several years but had lost touch over the last couple. She had a neuroendocrine tumor which I guess isn't technically a cancer but acts like one. She was very private about it. Only her family and a close friend or two knew so it came as a huge shock. Our daughters are the same age, just about to graduate high school. It's really sad.
Overall, I've been doing ok. That's really the best I've got at the moment. I am still on the treadmill trying to find the magic combination that will increase my overall energy and mood. That is all I can do. Keep trying and try not to beat myself up too much in the process.
Take care.
