Hypothyroidism

[kellyOd]

So Ryan is on a schedule of getting blood work on Friday’s - and infusions on Monday. So today we went and got it done, and it turns out his TSH levels (thyroid) are super high. Otherwise, blood work looks good. She immediately wrote him a prescription for Levothyroxine 25mg. Does anyone have any experience with hypothyroid and immunotherapy and/or this drug in particular?

[SGHSweethearts]

Hello Kelly,

Mark has hypothyroid, and has been on thyroid medication since he 1st started his immunotherapy treatment. 25 mg is a low dose. Ryan will do just fine, probably won’t notice anything different at all. Mark is still on it today and is on a much higher dose.

How are you all doing during all this?. We are going a little stir crazy here. I still have to go to work part time as I work for a doctor, but then come straight home. Praying we all stay safe and this is over soon

Michele

[kellyOd in reply to SGHSweethearts]

Hi Michele! Thanks for replying. Was he put on the medication because that’s what the immunotherapy did? I am torn.. of course I know immunotherapy can do this, but he is still trying to get off these damn steroids.. he cut his dose in half about a week and a half ago.. and that’s when the fatigue and headaches etc began. Given his steroid level is low.. (.75mg of decadron 2x a day) - now .75mg once a day. I don’t know if the steroids coming down may have been the culprit. Ehh.. I worry about the details sometimes too much. He starts the medication tomorrow morning. I’m sure they are starting him on a low dose to start and adjust as needed.

I live in Maryland, we have a little under 3,000 cases statewide. Only 34 in our county. I am paranoid. I leave the house very little. Grocery shopping, and maybe an occasional Starbucks coffee when I go. I am unfortunately also a smoker, and watching the news makes me physically feel sick and my chest feel heavy. Placebo affect maybe. I’m so anxious. Ryan is fairing well! Before the Keytruda started working, he was used to being in the house due to his condition. So he’s happy as a bug in a rug. Not bothered one bit. Bored strikes for sure. But nothing a nap won’t fix, then he’s back to cruising on his computer and playing video games. He just turned 30 on the 2nd! His oncologist told him when he was in his early 20s that he had a 30% chance to live past age 30. And here we are! Awesome milestone. First quarantined pandemic birthday! Grilled steak, and had ice cream. Nothing like bringing in a new decade (and one that wasn’t expected) like being STUCK in the house! Super grateful nonetheless of course ❤️ How are you guys?! My god this is scary for health care workers.. please stay safe!

[SGHSweethearts in reply to kellyOd]

Kelly,

1st Happy Birthday to Ryan, not too a great a way to celebrate right now.

I’m not sure if the immunotherapy was to blame, I think he probably needed it anyway. Mark is a lot older than Ryan. Are the Dr’s insistent on Ryan coming off the steroids? It took Mark a LONG time to come off the steroids, and I for one didn’t really want him to, he feels so much better with them.

Absolutely awesome milestone. Congratulations Ryan. I hate when oncologists make their predictions so to speak. They don’t know for sure. They can guess all they want. God Bless Ryan for proving him wrong. Prayers for Ryan to keep on going strong. If they were right Mark should have been gone almost 3 yrs ago. They say Mark is a Miracle, I think Ryan is a miracle as well. I pray it continues.

We are doing ok, staying safe. Mark is trying to work from home but it is proving difficult. Trying to find things to keep us busy. Mostly cleaning ugh!!

You stay safe as well. Praying that by the end of April the worst is over and we can start getting back to some normalcy.

Michele

[doulagirl]

Hi Kelly, wow so many wonderful milestones, congratulations !!

About the levothyroxine 25 mg, that is a very low dose. Frans had his thyroid removed because of a second primary cancer found there, don't know if you remember. So he now is on it taking 175 mg. Dosing depends on remaining function of the thyroid, weight etc, so sometimes it takes some adjusting. In Ryan's case very likely to be side effect to the Keytruda, but to be honest...that is the least. Easy to solve. Personally I would not worry too much, just be vigilant about symptoms. Here at home we had many discussions about it, including with our oncologist, take it out or not? One of the reasons he ended up removing it entirely was the ease of medicating afterwards.

Stay safe and as much inside as you can everybody,

Dorothe