Myelofibrosis and gastro-intestinal bleed and liver pain

[Dodders]

Has anyone who has MF also had any gastro-intestinal bleed and/or liver troubles?

Last week I quite suddenly became very breathless, light headed and weak. I went to clinic the following morning and blood test showed my Hg was at 56. I was admiited and overnight (Friday into Saturday) received 6 units of blood. Sunday my bowel motion was black and tarry (sorry) and so I saw my GP on Monday who confirmed that I must have had a significant internal bleed. It so happened that I also had an appointment yesterday at the QE B'ham with an expert consultant haem. When he palpated my liver it hurt. The consultant was really quite concerned by these 2 symptoms and naturally so am I. They might be related to the underlying MF but until further investigation there is no firm diagnosis to be made. It could be an ulcer, or perhaps portal hypertention and hence varices, or something else,but I've no idea. I had both colonoscopy and gastroscopy about 8 weeks ago and all was okay as was a CT scan. I would be very grateful if anyone who may have had a similar set of symptoms could suggest what might be going on. Thanks

[jane13]

Sorry can't help but have MF so wanted to offer my support and would be interested in hearing the eventual diagnosis. very best.

[Dodders in reply to jane13]

thank you for the offer of support and good wishes. I'm off to gastro-enterology to see what they make of it. All the best

[beetle]

Hi Dodders, yes I've been where you are about five years ago! All my investigations came back negative the same as you. The bleeding eventually stopped after about 8 days and (touch wood) has not happened again. I also have an enlarged liver that is painful on palpation and my liver enzymes have been significantly elevated but are gradually reducing now - who knows why that is?! My consultant suspects that the lowering enzymes could be attributed to stopping simvastatin but he says he's more worried about my liver than my heart at the moment😲,!! He did add that we could possibly find another statin if necessary but in the meantime I am using benecol and plant sterol tablets to control cholesterol

I would be very interested to hear if they come up with any specific diagnosis for you. I think once my bleeding had stopped they stopped worrying about me and didn't take it any further

Very best wishes, Jan

[Dodders in reply to beetle]

Thanks Jan, ineteresting to read about your experiences and glad the bleeding stopped. An urgent referral has been sent to gastro-enterology and so I'm hopeful that I'll know more fairly soon. In the meantime my local haem saw me today and when palpated this time there was no pain and she seemed to think that it felt more or less normal. It's really pretty complicated and one thing seems to have an affect on another but after nearly 6 months of waiting things seem to moving quite quickly now and I appear to be heading eventually towards a transplant. Thanks again and all the best.

[beetle in reply to Dodders]

I'm so glad things are moving for you. I have decided against transplant and now would most likely not be a candidate. i hope all goes well for you. Let's us know x