96 weeks or 1 year and 10 months - Post Lemtrada
August 24, 2020
I almost missed it but this is the summer check-in. There has been a lot that has happened and at the same time not much change since my last post. We are hiding from the heat again in the north country. We are on the verge of being empty nest-ers and are able to hide out a little longer than a typical year. Texas is still a covid hot spot so we are not only hiding from the heat but also from the Delta variant. Texas' 7-day average is up to 17,000+ new cases per day. The area we live in is pretty close to the peak in new cases we saw in January. I don't know what else to say about that. We know how to slow the spread of this virus; get a vaccine and/or wear a mask and keep your distance from other people. It’s almost as
if that personal responsibility thing doesn’t work. 🙄
When I saw my neurologist in April we talked about my Lymphocyctes possibly being at a new normal. Then they jumped to 1848 in June and I was so excited that they reached a new high number! Then in July they were back down and August, down further. :( I know this is going to sound silly but if this my new normal I will be disappointed. I have always thought I had a really strong immune system. I very rarely get sick maybe a cold once a winter even if everyone else in the house has a cold. If this is my “new normal”, how does that effect my ability to fight off “regular germs”? No one can really answer that because there are so many unknowns about how our immune systems work. From just a lymphocyte prospective, my immune system is half of what it was pre-lemtrada. Does that mean I’ll get twice as many colds every winter? Will I get the flu every winter now (god, I hope not)? These are the things inquiring minds want to know but for the most part Doctors can only take educated guesses. In the wake of Covid, I hope they can learn more about how these things work.
The other thing that hasn’t seen much movement is my thyroid. I saw my endocrinologist in June and she was very encouraged that my TSH went to .17 which she said seems small but my numbers have been at zero for so long that she considered it a step in the right direction and that sometimes the thyroid takes time to wake back up when it’s been shut off for so long. Great news! Right? In July it was back down .04 then to .03. :( I had my TSH checked a second time in August right before my August follow-up with her because she also wanted to check my free T3 & T4. At my telehealth appointment, a resident talked to me first and he told me my TSH was .50 which is the lowest level of normal. Normal! Then the doctor came on and burst my bubble by telling me she was concerned about the accuracy of the lab result, it’s not normal for a TSH number to change that much in 10 days. T3 and T4 can fluctuate like that but not TSH. :( That’s now 3 :( ’s if you are keeping count. ;). So I will be making the trek to the Quest lab in a week or so and will have my TSH checked with my usual monthly labs but she also wants to recheck my free T3 & T4 again.
In the next category of things happening but not much changing, is the previously mentioned covid is spike. I got a booster shot this week. My PCP's office had called to schedule me to come in for one but I won’t be back to TX until next month. I was just planning to wait until then but because the shots are more available you no longer have to be a State resident to get a shot in that State. I will tell you that it sucked as much as the second shot did. So when or if they start recommending boosters for everyone if you had a flu-like reaction to your second covid shot, you will have one with the booster too. I felt like crap for about 48 hours. The chills (but not as bad), body aches (even my bones ached) and this time I also had nausea and some vomiting (sorry, it’s a health related blog). I am glad I was able to get it before I have to head back to Texas which is competing with Florida to be #1 at creating covid patients. It also makes me feel guilty that there are countries that don’t have enough vaccine to vaccinate their population once.
Let’s see…I have a MRI scheduled in October then I am following up with my Neurologist and I also have an endocrinology follow-up but she said she would let me know about the newest lab results before that. I am still currently planning to do my next Lemtrada infusion in February but of course that all depends on what is going on with Covid. We might be fighting the Epsilon variant; I really hope not.
When I started this blog, the point of it was and is to help others who might be deciding to take Lemtrada have another story/experience that they could weight the pros and cons against. I expected to have a pretty straight forward story of: this is what I did, this is how I felt, these are the symptoms that improved or didn't. Who could have predicted that we would have a global pandemic and my journey would be so bumpy or so open ended really. It's a swerve that no one predicted and we just keep doing the best we can.
Stay Healthy
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