Today, we just jibbin…

last week was a blur. I was out of town and the US actually had a holiday so it was a short week.  I blinked and it was over.

my elite group of friends has grown by 1 and I have determined that I have a hard head. Geez, I fell Friday before last week and hit my head on a granite countertop. Sometimes when I fall, I hear the landing (I think) and it sounds so horrible that I can’t imagine what someone else hearing it thinks (especially if they’re in another room or something). I was by G2 for the weekend and Char and I were walking along a corridor when I said to her, “want to race?” Of course she couldn’t say no (cuz according to her mother she runs everywhere) so I’m sure she could think of nothing better to do at the time. She said, “READY?!?” I said, “nope” and continued walking. My plan was to walk to the “finish line” (a table), say “ready!”, slap the table and say, “I win.” Well…I got to the table and leaned to my left to slap it and I have NO idea what happened, but the next thing I knew was that I was falling…to the right! Now if someone can explain to me how one leans to the left and then falls to the right, I’d appreciate it; it makes no sense to me. G2 was standing on the other side of the table and she looked up, got confused about was happening and saw me going down in slow motion. She also almost reached out to grab my earring to help me fus she was confused.

Side note: apparently I never alert anyone around me in any way that I’m going down. It’s always a silent, slow motion fall – cuz almost everyone who’s been around me when I fall say the same exact thing.

on my way down, I hit the countertop. I swear that from what I remember hearing I just knew that things might have been bad. Good news-they weren’t. My head hurt, really hurt (only to the touch; not that I had a headache) for a few days especially when I was combing my hair. It’s still slightly tender but all in all, everything is good. I fell once when OB was here in April but I really don’t remember the last time before that. That is a good thing but it would have been nice if right at this moment in time I could say “I don’t remember the last time I fell”…sigh! I blame MS for all falls. Period!

so I’ve shared before that Lemtrada can affect the thyroid and cause hypERthyroidism or hypOthyroidism-seems so silly to me just choose to cause one or the other not both. Anyway, my blood tests from October thru December showed evidence of hypothyroidism so I’ve been on a daily pill to increase the hormone that is produced by the thyroid. Okay, so all along after that the results have been normal. The last time I went to my endocrinologist, she felt good about what she was seeing, so she relaxed her need to see me. Additionally, even though my blood work came back irregular, I actually had no symptoms of hypothyroidism at all, so she felt okay not seeing me as consistently as before. Last month’s test results were positive for it again and so I have to go back to her and she’s going to increase my dosage of the daily pill.  Great! Was able to eliminate doses of the muscle relaxant but now I have to increase dosage of this other pill. Anyway while talking to her I learned that (of course) little is known about what exactly Lemtrada does to the thyroid. She shared that she had a few MS patients on Lemtrada and their thyroid results are baffling, confusing, erratic (all those words rolled into one). Additionally, most patients are non symptomatic so there’s really no telling exactly how to interpret the results.

She told me about someone whose result was 200something – the normal range is .45-4.5 and he was walking around normelnormel like nobody’s business. Mine was 12.65 last month so it’s high but again – no symptoms.  I’ve gained 1 or 2 pounds but i don’t think it’s fair to blame my thyroid – i should probably blame the beers.

So,I have no symptoms but have to increase the dosage of this pill that luckily doesn’t have major serious side effects. The one “good” thing, at least to me, is that I am consistently hypo and results are not fluctuating all over the place. oh well…wha yuh go do…file this under things over which i have no control.

I gone so.  hol’ it down till next time.

We Talking Side Effects…Again

We sick people can only yearn for the day that a drug manufacturer makes and distributes a drug with good or no side effects.  Before I get into the side effects situation, lemme say that the results of the MRI done in December came back clean. One can reasonably state that Lemtrada is clinically doing what it’s supposed to – slowing the progression of the disease.  I have no additional scarring, no additional lesions on my brain or spine and I haven’t experienced any new symptoms so YEA! I’ll take that and keep it moving.  Leh we talk side effects…

when I first told you about Lemtrada, I mentioned that it could potentially cause my thyroid to overact or underact.  That just seems so stupid to me; just pick one or the other, not both! Overactive thyroid causes (among other things) weight loss and under active causes weight gain.

Disclaimer: please know that I am not making light of either situation. The weight loss/gain and everything else that comes along with each is nothing to joke about.

I just knew with my luck, my thyroid would decide to stop working and I’d gain weight.  I mean can a gal jes lose weight without actually trying??? My thyroid-stimulating hormone (TSH) levels are tested monthly as part of the routine monitoring done by the Lemtrada manufacturer. Everyone knows that a call from ur doctor’s office after a test was performed is not good news, so when my caller ID displayed the MSCA 2 weeks prior to my regular scheduled appointment, I braced myself. I didn’t know what was wrong but something had to be. Turns out that between August and November my TSH level results were erratic at best. Let’s say the normal levels are 1-4, the last test came in at 37.5! I won’t bore u with additional details but suffice it to say that the test had to be redone but the results still came back at 13.8.  High TSH levels indicate what? U guessed it – an underactive thyroid. I am in year 3 of having Lemtrada and apparently it is “normal” for this to occur in year 3. Would have been nice not to be normal but wha yuh go do?

Good news is that this is treatable and, all things considered it is probably the “best” side effect that one can ask to be exposed to. Bad news is that I have to add another pill to my regimen…steups.  More good news too is that I can continue to indulge in my poisons of choice with this new drug – u know I cleared that up right out the gate. It’s a daily pill and it’s already on order and should be on its way to me soon. As with everything I’ve dealt with over the years with this disease, I’m going to have to determine over time what dosage will work for me.  The doctor (I now have an Endocrinologist on my list) said to me “it’s a small dose but if u find that u start feeling anxious, ur heart races, u start sweating a lot or experience rapid weight loss, call me cuz that means it’s too much and I’ll have to adjust the dosage”  Great! More things to look out for over the next few months. One thing that MS has taught me over time is how to “listen” to my body and really be in tune with it, so additional monitoring to be done over the next few months.

Time will really tell how this goes.

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