Since I was young, the first thing most people thought when they saw that fluffy little girl is that her thyroid is bad. Needs blood work to determine just how bad it is. Heaven forbid it is something actually worse. Test more than that one thing. What would I know? Fast forward twenty plus years, and countless doctors testing the same thing. Guess what? It never was an issue.
I kind of took pride in that.
Who knew that it wasn’t always a medical condition that caused weight gain on a 12 year old??
Fast forward … Went to see a new neurologist. I instantly liked him. Put me at ease, answered all of my husband and my questions. He was with us for over two hours. Something … reassuring about a DR that specializes in MS that HAS MS!! Didn’t even know that was an option. So, while we were waiting for him there is a picture on the wall that asks four questions.
- Have you had a sleep study?
- When was your last MRI?
- Are you on any DMDs?
- Have you had your thyroid tested?
Well, I have had three sleep studies. Previous doctor wasn’t sure if I needed a CPAP or BiPAP, so he ordered another sleep study. I said enough. Four was just too far. That was a lot of sleep I wasn’t getting on top of the sleep that I don’t get. Turned in my equipment and went about my life. That was nearly a year ago. Since losing some weight, sleep has been better. SO, new DR has ordered another. This one isn’t like the last three. No polident to hold wires on my head, told to lie flat on my back and use only one pillow. Didn’t NEED the tubes in my nose to check O2 levels. Just a little machine they send home, and I tape it onto my finger. I can handle that. I will say, this is the last one. Regardless of the outcome, I can honestly say I am done.
Last MRI, that’s easy. Just a few months ago. He got a copy, YUP. I have MS.
What meds have I been on?! Well, Rebif, Tysabri, Tecfidera, Gilenya and Tecfidera. Hate everything about this med. We talked. He wanted to know why I was changed from Rebif to begin with? Was having relapses. Smart man asks how that it was proved that it was not working. MRI. OHH then we started talking about MRI’s. I have had three this year. He said that he didn’t need to order another. One to prove that I had MS was enough. No reason to keep pumping my body with contrast or radiation. Maybe in a few years, but probably not. Back to the med. The reason that I stopped talking Tysabri was because I tested positive for the JC Virus. FUNNY, that the same virus causes PML in patients on Tecfidera. DR.MS recommends that I stop taking that med. Not only that, but with all those horrible side effects what is your quality of life? He thinks that either Rebif or Copaxone are a good option. I choose Copaxone. What does that tell you about the side effects if I am willing to go back to taking shots three times a week? Several different reasons. The number one is that it is a Class C medications, which means that it is ok to take during pregnancy. NOT pregnant, but it is a goal. I want to see the amazing father my husband will be. In due time 🙂 One of the many things that scared me during all these years was that if I was to become pregnant, what would the medication I was on at that point do? I do not plan to be on any medication if I was to become with child, just that I wasn’t as scared. Not sure if this is making sense. Just that I feel better not having so many things to fear about the unknown of a medications.
NOW, we get to the dreaded question. Yes, I have had my thyroid tested. Several times. I don’t mind have more blood work. Lets see what is going on.
Fast forward a few weeks. I get a call from Walgreens letting me know that my prescription was ready. CONFUSED, I call them back and ask what the medication is. Lovothroxine. Yeh, I have no idea what that is. Synthroid generic. I hang up and google it. At that point, I decided the med had been sent to me by mistake. Went online to see who the prescribing doctor was. New MS doc. Stubborn, I immediately call his office and leave a message with his nurse. A few days later, she calls me. Doc says that my levels are low. Not a hundred percent sure. It was like a 0.92 and he wanted it to be more like 1.25. So, a medication was called in. Take it for the next two months, and have your blood work repeated. At your three month we will see what it looks like and see where to go from there.
AND it pisses me off. I had a week of mixed emotions.
So, needless to say I have told no one. My hubby, because he won’t remember any details about it. Plus he saw how much it upset me. I’m ok with him knowing. Not a sole else. Didn’t tell my Grandma, Mom, siblings or cousins. As I said, pissed. When I feel like I am over this, I will tell you about all the other stuff.