ET-symptom of abnormal bleeding.

[azaelea]

Hi everyone. I would like to know exactly what the abnormal bleeding symptom means. In other words, where does it occur ? Can it happen internally. I understand the potential clotting symptom but can't find out if it's abnormal bleeding just when you cut yourself or somewhere internally that you don't know about. Can anyone enlighten me please?

[Tico]

Hi,azaelea,it depends on what you see as abnormal. Abnormal means unusal or not expected. Back in early december i had 3 days of post- menopausal bleeding as i had i hadn't had a period in several years. So that was classed as abnormal bleeding. Anything out of the ordinary or unusal or bleeding more than anticipated whether external or internal is probably down to clotting issues. Atb, tina.🤗

[azaelea in reply to Tico]

Thanks Tina. I have recently had two silly accidents, first one being opening car door onto my lower leg which caused a haematoma and is still oozing ,requiring dressings then a week ago after taking something from car boot,my husband thought we had finished when I bent back in and ,boot lid down on my head!! It was only a very small cut, but blood running down my face for a while! On Aspirin of course which wouldn't help. When I have blood samples taken I don't bleed at all. Hope you are coping alright. Regards, Fran

[fee13]

You can look up videos on YouTube, platelet dysfunction in ET. I watched a couple today & they were very informative.

[azaelea in reply to fee13]

Thank you for that information! I will certainly have a look at You Tube. Regards, Fran

[Cja1956]

I get spontaneous nosebleeds for no apparent reason. They’re very infrequent and don’t last long so I don’t worry about them.

All the best,

Cindy

[azaelea in reply to Cja1956]

Thanks for your reply Cindy. xx

[clubdino]

Some initial symptoms that would be a concern for abnormal bleeding would be nosebleeds and bleeding when brushing teeth. (That is for people who normally take good care of their teeth.)

[azaelea in reply to clubdino]

Thank you for your reply. I haven't had nosebleeds or bleeding when brushing my teeth (touch wood) . Just when I recently cut my leg , then after that banged my head on car boot lid! (Accident prone at moment)! No co-ordination. I'm on Aspirin and Hydroxy. Kind regards.

[hunter5582]

Mostly folks think about thrombosis (clotting) when dealing with ET. But oddly, it can also go the other way (hemorrhage). Particularly when your platelet numbers get too high (usually above 1 million) you can develop Acquired von Willebrand Disease. Platelets no longer stick together as they should. Diagnosis of this is actually rather tricky as it does not present like the Congenital version of vWBD. Seem lots of docs are not familiar with the testing protocol for Acquired vWBD. I had to show my doc (who I really like) what was in the literature on this. I am currently being assessed for Acq.vWBD and have a bit unusual presentation as my body seems to react with lowered vWB factors at platelet levels less than 1 million. just goes to show, how the MPN plays out it unique to each of us. All the best.

[azaelea in reply to hunter5582]

Thanks for this information, Hunter. I have heard of Acqired Vonnie Willebrand disease and thought it was mainly with very high platelets, but as you say we are all different. At the moment my platelets are around the 700 mark. No nosebleeds ( touch wood) or bleeding with tooth brushing. Hoping you will be Ok and your assessment will not prove worrying. Kind regards.

[Doggy1903]

hello there, hope I can help. Yes usually bleeding would be bruising into any skin area, so bruising of your arms legs, would be of concern. There does not seem to be high risk of internal bleeding, especially with good control of platelets. The doctors and nurses have always said, if in doubt any unusual marking anywhere to phone haematology straight away.

Please feel welcome to ask anything else.