Last year we had misdiagnosis of wilson’s disease for my 6 year old son and had a difficult time keeping vitamin d and k levels. Had to use 50,000 iu/week for vitamin d and still fall below the threshold of 20-50 ng/mL. Upon PSC diagnosis this year and starting urso, 50,000 iu/week became too much and went up the other way around 65. Now with 2000 iu/day, the vitamin d levels are around 35 ng/mL. PT/INR became inline after taking vitamin k 5mg daily and no issues keeping them within the levels. Iron was 9.x all of last year and supplementing 325 mg ferrous sulfate daily for the past few months upon psc diagnosis and its barely touched 11 out of the 11.4-15.5 g/dL range.
We have started vanco about a week ago and wondering if we should continue vitamin k or not. We are planning to continue iron 325mg and vitamin d 2000 iu/day. We are hoping to stop vitamin k now, check levels for the next couple of months and restart if PT/INR goes outside the range. Anyone else had to use vitamin k while using vanco? Any feedback appreciated.
Assuming these were out of whack due in part to PSC cholestasis and/or IBD, and that oral vancomycin is able to resolve these, your son may not need to supplement. This will take some testing. Taper (with your doctor’s consent) and keep an eye on labs to see what happens. It probably wouldn’t hurt to get a few solid months on the treatment before changing anything else.
I’m on treatment and take 2000 iu vit D only. My levels would likely be normal without this supplement, but it doesn’t hurt to take. I have osteoporosis and don’t want things to get worse.
We are in transition & changed the doctors for vanco treatment and the new doc hasn’t prescribed vitamin k yet. That’s the context here but am able to refill a prescription from the previous doctor today luckily. This will get us one more month and will follow-up with the new doc during for a prescription.
vitamin d and iron are OTC, so we will continue and monitor his levels going forward. Thank you both for the feedback.
Your son is extremely lucky he can tolerate the oral iron supplement. I get unimaginable heartburn to the point it feels like I’m having a heart attack. I also take 50000 iu vitamin D weekly. Doc hasn’t checked my levels in a while I’m curious as to what they are holding at. I have to get iron IV infusions about every 6 months. For a while after those I feel great. Good luck to your son and the long road ahead. I enjoyed 20 years after diagnosis before I became extremely ill last year and now on the transplant list.
Agreed and what you shared is going to be helpful as I didn’t come across that before. We have to take one step at a time and keep monitoring the levels closely.
I wish the best for you on the transplant and hope it happens soon.
Nice to hear that his vitamin levels have normalized!