Hi Everyone
I was diagnosed with essential thrombocythemia (Essential thrombocythemia (ET)) recently in mid October 2025 and started on what I believe is a low dose of interferon (45mg). I’ve been on it only a month.
All my blood bio markers are doing really well, I’m tolerating it really well. However my liver marker has spiked 3 times the normal range.
I’m wondering if anyone has experienced this and if this might be an occurrence for some patients? The medical evidence suggests it’s ok to continue up to 10 times the normal range and I’m discussing this with my team.
I’ve read that milk-thistle might help support the liver. I’m super healthy and don’t drink alcohol, and never did much anyway and stopped altogether 10 years ago. I eat well, exercise moderately and don’t have stress currently as I work for myself.
I wonder if anyone has any thoughts/suggestions.
Kind Regards
Mia
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Good evening @Mia2025, I was diagnosed with Essential thrombocythemia (ET) in 2018, 6 months after my 1st (so far!) heart attack in September 2017, aged 52. I was put on Pegasys Interferon injections until December of last year and my ALT liver function, along with my GGT liver enzyme tests have, to put it mildly, been a recurring cause for concern, and always high to very high.
In December of last year (2024) I was moved on to Besremi injections and Hydroxycarbamide capsules and, once again, my liver results have been poor.
As of this month I am back on Pegasys injections, once more at 90mcg every two weeks.
Other than feeling tender in the abdomen area, and suffering from extreme fatigue, I am mostly okay and still working full-time (and a half!).
Best advice I can offer is to listen to what your body is telling and to not overdo things, although I am a huge hypocrite in this department! 
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Dear Jimbo165
Thank you so much for taking the time to share your journey with Essential thrombocythemia (ET) and for your reply to my queries. I really appreciate it. I apologise about my slight delay in replying.
I was very moved by your share and I was very sorry to read about your health challenges. It must have been so difficult for you - my gosh a heart attack you survived relatively young and then your journey with Essential thrombocythemia (ET). I am wanting to ask you how are you feeling today, and I hope you have had family or friend support? It is a lot to go through.
It is very early days for me as I have only been on treatment for 4 weeks. I am 51 myself and I almost had a stroke. The Essential thrombocythemia (ET) paradoxically saved me as I had a brain haemorrhage unbeknowst to me which was undiagnosed and it clotted and the headaches I experienced were related to that for 5 years.
I am forever moved by the stories of resilience and spirit such as yours. We are survivors.
I am waiting to speak to doctors following blood tests and I hope I can remain on interferon. I have no side effects, I am no longer experiencing fatigue and feel like I am on the mend. I will see what they say in the next week.
I have read that supplements like milk thistle might help with liver metabolisation. Have you ever considered speaking to functional medicine doctors?
Thank you again for your kindness.
Mia
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Good afternoon @Mia2025 (and anyone else dipping into this thread), I hope that you are well. Thank you for your kind words in response to my post and, yes, life does seem to have taken a turn in an unplanned direction for both of us. I was so sorry to read that you had almost suffered a stroke and have had a brain haemorrhage. Both of those events must have been traumatic to say the least, and most definitely not something that you would have been actively seeking. It would seem that we were both “saved” by our underlying conditions: your brain bleed and my heart attack.
I am due blood tests on Wednesday and then I am back at Leicester Royal Infirmary (LRI) on Friday to see one of the Consultant team to see how well, or otherwise, the change back to Pegasys has gone, although it is early days once more as I’ve only had two doses so far.
Fatigue is far and away my greatest side effect, as well as my constant companion, but neither the Consultants nor myself can say for sure if the fatigue is down to the Interferon, the Essential thrombocythemia (ET), the damage caused by my heart attack (apparently I lost 20% of my heart capacity in that episode!) or my incredibly advanced age (60!) , but, it is what it is and I find acceptance of the fatigue both a difficult thing to do, but also the sensible option as do to do otherwise and to fight against it would be a waste of what little energy I still have.
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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