E.T. Serum Bilirubin Level

[azaelea]

Hello friends, I have a question about bilirubin levels in E.T. I have been feeling pretty bad over the last 10 days with nausea and pain in my right side under the ribs which spreads round to my back. I’ve seen GP who thinks it could be gall bladder but she’s arranged a scan which I’m hoping to have within next couple of weeks.. I noticed my serum bilirubin levels were high and mentioned this on first visit. After blood test they’ve gone up excessively from 36 to 52 in a fortnight. On looking at my blood history it has been in 30’s since being diagnosed with ET in 2018. I’d be interested to know if anyone else has noted theirs. Could this be the ET causing it, or the Hydroxy. I have read that it comes under one of the drugs that can affect the liver enzymes and could cause abnormal bilirubin levels. I’d be interested to hear your views. Kind regards, Fran

[Jelbea]

Bilirubin can be raised with inflammation of your gall bladder. Perhaps the rise in level could be due to this.

[hunter5582]

"Hydroxyurea is associated with a low rate of transient serum enzyme and bilirubin elevations during therapy, and has been implicated in rare cases of clinically apparent acute liver injury with jaundice."ncbi.nlm.nih.gov/books/NBK5....

[azaelea in reply to hunter5582]

Thank you Hunter, I hoped you would contact with your knowledge and I’ve read the link you sent, together with numerous other articles on this subject. I think I’m slightly on the mend in the last couple of days so will have to await the outcome of the scan when I get it. We just wonder sometimes exactly what these toxic medications are doing to our bodies, but where would we be without them. Thanks again for your reply and I hope you are keeping OK. Kind regards,Fran

[hunter5582 in reply to azaelea]

I am doing well thanks. Sometimes we do have to break eggs to make on omelet. Some form of adverse effect is pretty common, particularly with some of the meds we use. And we all respond differently to each of them. We are fortunate that our options are expanding. The good news is that there are other options if it turns out you can't tolerate HU.

[PhilReade]

I’ve had raised bilirubin since the start of my PV/ET I had a splenectomy in 2014 and my bilirubin been on top side ever since My Haematolygist at the Christie’s says it’s fine though but I always worry on my liver results

My ALP and ALT I always check as they can indicate disease

And like most older adults I’ve got a fatty liver

[azaelea in reply to PhilReade]

Thanks for your reply Phil. That’s interesting you have had raised bilirubin since PV/ET was diagnosed. I’ll check my ALP and ALT now too.

[Hopetohelp]

Glad to hear your Gp is following it up. I am on peg and the day I inject get the same symptom you are talking about but soooo mildly it doesn’t bother me at all and only lasts minutes on and off literally. Bilirubin serum is normal. Probably doesn’t help but thought would mention it in case it is et related. Good luck

[falconered53]

I'm sure your doctors are doing what's necessary to figure out what's going on. Just thought I'd share my experience which has a few similarities. I am PV Jak2 + and had been on hydoroxyurea for about a year when I started experiencing nausea and exactly the pain you are describing. Had a few attacks like this that cleared up on their own, so, foolishly, I didn't look into it. Then I had an attack so severe that I was admitted to the hospital. Turned out to be acute pancreatitis brought on my a gallstone trapped in the common duct. Bilirubin levels were sky high. Had my gallbladder removed which solved the problem. I don't suggest you are experiencing the same but want to encourage you to follow through. Pancreatitis is very painful and can be dangerous. Best of luck to you.