ET-symptom of abnormal bleeding.: Hi everyone. I... - MPN Voice

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ET-symptom of abnormal bleeding.

azaelea profile image
11 Replies

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?

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azaelea profile image
azaelea
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11 Replies
Tico profile image
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 profile image
azaelea in reply toTico

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 profile image
fee13

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

azaelea profile image
azaelea in reply tofee13

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

Cja1956 profile image
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 profile image
azaelea in reply toCja1956

Thanks for your reply Cindy. xx

clubdino profile image
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 profile image
azaelea in reply toclubdino

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 profile image
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 profile image
azaelea in reply tohunter5582

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 profile image
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.

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