ET calr mutation and high ferritin

[Threestreams]

hello . .. recently diagnosed with ET .. calr mutation and prescribed Hydroxurea. Question to group … I also have high ferritin levels and require regular vennesections to get my levels down … does anyone else have this as well ?? Thank you

[Alldayeveryday]

Do you have hemochromatosis? Another reason for a high ferritin would be high inflammation. My iron is high & I am a carrier with low risk for iron loading says my heam. However, my ferritin is in the 100’s & my doc watches it.

[Threestreams in reply to Alldayeveryday]

Thanks .. yes it has been diagnosed as that .. mine is around 1000 .. I have asked if they conditions are connected … they say no ??

[Phil1955]

Hi prior to being diagnosed in 2015 as jak2 positive with ET I had 12 months of tests I had an enlarged liver and spleen my ferritin was 910 they mentioned haemolysis and haemochromitosis and tested me for all sorts but had a splenectomy in 2014 they thought they cured me but eventually diagnosed with ET

[Threestreams in reply to Phil1955]

Thanks … that took awhile for you to get a diagnosis. I was floored when I found out .. just started the year off being really tired and brain fog with a weight loss .. many months later here I am . Eager to learn 🙏

[Wyebird]

Yes I too am ET Calr. My ferritin has been high for years was in the 800s think it’s in 600s now I have a blood test soon to check it. I’ve had various tests but no reason found. How high is yours

[Threestreams in reply to Wyebird]

Hello and thanks for the reply . I am around 900 .. however have had 2 venesections in last 2 months and will now go to fort nightly to get it down under 200… what go they think might ?? Be cuddling it for you.. I want to know if the 2 conditions are connected .. I am battling with fatigue at present.. how about you ??

[Threestreams in reply to Threestreams]

Sorry about my spell checking 😦

[Wyebird in reply to Threestreams]

I haven’t been offered venesections. It was always 300-400. After I had covid it was way over 700. Apparently covid can do that. So here I am about 6 years on and it’s still over 700.