Can Tacrolimus be causing dizziness post liver transplant?

@jtjourney, Congratulations of your 14 months with your new liver! And a special cheer to hear that you are doing very well.
Since dizziness does not sound like a 'normal' thing for you, and because you are on tacrolimus, this might be due to an elevated tacrolimus level. I'm speaking as a patient (liver/kidney transplant 2009). It has happened for me between routine 3 month labs.
I suggest that you contact your transplant coordinator and let them know about the dizziness. I expect they will have some questions and might have suggestions, or might want you to have an extra lab test to check your levels. It is best to be sure that all is okay! In my experience, my tacrolimus has been adjusted as I moved further out from my transplant date.
Do you get you labs drawn locally?

@rosemarya thank you for your response. My tac levels have been in normal range for some time and I get a lab draw every 2-3 weeks. One thing I forgot to add is that I had to add a statin 3 months ago but I didn't start to feel the dizziness until a month ago. My PCP lowered my statin, from 10mg to 5mg a week ago, so I'm also that helps. Thanks again for your response and congratulations on your transplant!

Hi. I had my liver transplant 18 months ago. I have been on tac the entire time. I was warned at the time I might get slight dizziness upon standing from a laying down position. But was told if it was minor and occasional that could be normal for me and was not a concern. It was not referenced as regarding to tac. I would take Rosemarys advice and check with your transplant team but would not be too concerned in the mean time. Congrats on 14 months !!

@jtjourney, how are you doing? Have you been able to get the dizziness under control?

Hi. I'm so sorry you're going through this, it can be really scary and frustrating.
I had my transplant in Feb, 2024 and experienced intense dizziness for a few months - every time I got up. I even lost consciousness and landed on my head/face twice...not fun and very dangerous. Mayo thought it was my heart, my cardiologist said it may be the tac, so I never got to the bottom of it. Luckily it started to dissipate after 2-3 months.
I hope yours is improving. Hang in there!

@colleenyoung Yes, things are much better. It was the interaction between my tacrolimus and my statin. My statin dosage was reduced and the dizziness is gone. Thanks everyone for reaching out.

@heidi15 Thanks for reaching out. I am much better. There was an interaction between my tac and my statin. The statin was causing the dizziness and the dosage was lowered. I feel much better. Thanks again!

My wife had her liver transplant in January 2025, so it coming up on 11 months since. I wondering if anyone in this group has had breathing problems, in losing there breath in walking still at 11 months? We are working with the pulmonologist at our liver transplant hospital, but they haven't found anything definitive yet. Our liver transplant team states the most improvement in her day to day lifestyle should improve in the 9-12 months range. I'm just wondering what others in the group experienced in this stage of recovery, if it corresponds with what we are being told?

@kim1965 I’m 2 years post just last week. I have breathing problems as well. I’ve had heart cath, and pulmonary work up. No one has been able to get to the bottom of my issue. Mine is worse with exertion sometimes even going up stairs. I actually have a follow-up with my pulmonologist next week.

@charleswoods
We have a set of 4 stairs and a set of 11 stairs to get to bedroom. When she gets to the top she can barely get in bed, having to sit for a few minutes to catch her breath. It's not just the stairs, thoughout the summer, it was good, as she walked about 200 yards twice in one day, but 3 days later she isn't able to move much and sits in her chair most of the day. Please keep us informed how your progress is and we will do the same to hopefully help each other get back to enjoying life. We got this, and you got this!