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Hughes Syndrome APS Forum

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Morning Clots

AlisonT2 profile image
16 Replies

Hi everyone hope you are keeping as well as can be expected and safe.

Some mornings I have been waking up with small clots in my mouth there has been no mouth injury. I have asked about them at the warfarin clinic and asked others who are on anticoagulants but no one else has them and the clinic have said they have never come across this before. My next appointment with Haematology is not until 8th July. I was just wondering has anyone else had this "problem"

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AlisonT2 profile image
AlisonT2
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16 Replies
GinaD profile image
GinaD

What does a small clot in the mouth feel like? I ask because mouth ulcers are associated with lupus, which is APS's autoimmune cousin.

AlisonT2 profile image
AlisonT2 in reply to GinaD

Hi Gina the first time it happened I thought it was small pieces of cucumber and I had missed them when I cleaned my teeth.

GinaD profile image
GinaD in reply to AlisonT2

sure sounds like a mouth ulcer, aka, canker sore. If that is what it is, ( a doctor would know) then the sores tend to be triggered by something you eat. I get some whenever I eat grapefruit. So... no more grapefruit for me, A college friend sadly got such sore after eating chocolate. -- so glad with me its grapefruit and not chocolate.

AlisonT2 profile image
AlisonT2 in reply to GinaD

Definitely not ulcers nothing wrong with mouth or gums. My gums bleed sometimes when I brush my teeth. When I get the clots no ulcers no abrasions no bitten tongue just small clots

GordonL profile image
GordonL

Hi Alison, To go with the APS, I also have ME and FM. Seriously it's like choose an acronym! Anyhow, for me it's an ME (myalgic encephalomelitis) thing due to the thinning of the gums, I usually wake up with a mixture of blood and saliva on the pillow, with occasional clots in my mouth. First thing I do in the morning is brush my teeth and see them then. Hope this helps.

AlisonT2 profile image
AlisonT2 in reply to GordonL

Thanks Gordon although its not nice I'm a little relieved to know I'm not the only one although mine are very dark clots

GordonL profile image
GordonL in reply to AlisonT2

Hey Alison, Dark clots, could that be due to deoxigenated blood or less drooling over night;).

AlisonT2 profile image
AlisonT2 in reply to GordonL

I dont know neither do any of the medics I have spoken to so far so will bring it up at next haematology appointment have written it down with dates as tend to forget stuff. The Inr nurse said it might have something to do with the fact I have a double spleen but dont really get that way of thinking tbh

hihannula profile image
hihannula

What does a mouth clot look like. I sometimes get what looks like small red dots on the inside of my mouth and sometimes blue bruising. All with no trauma…

AlisonT2 profile image
AlisonT2 in reply to hihannula

Hello hihannula roughly the size of half an English 1p piece very dark red/black and jelly like

Gdnskye profile image
Gdnskye

I'm glad if I've been able to give able to offer any advice that helps, but as for the double spleen implications, sorry, but that's way beyond my level of knowledge or experience.

Gdnskye profile image
Gdnskye

And I forgot to mention. Oh the irony...... I also have a bad memory. In fact my bad memory has bad memory. As with you, I have to write everything down. I set alarms for things and forget what the alarms for!

MaryF profile image
MaryFAdministrator

I hope you can at least book an appointment with your Haematologist on line or on the phone to discuss this, if this is a new symptom for you, very puzzling. MaryF

dawnzy profile image
dawnzy

Hi alison, I too get these but I call them blood spots in my mouth I've had them since I was very young I have had a recent run of them and took photos for my consultant to see on my next visit, I have extreamly bad ulcers from being young aswell and apparently this were connected to my having APS at such a young age I was only diagnosed just 4 years ago it's something I grew up with and accepted that was part of me

MLNC profile image
MLNC

I would raise all of this with your dentist. When you attend do so with pictures of any ulcers or clots and make a note of placement, size and regularity. There are a number of conditions, systemic and oral that could be included in a differential diagnosis with this history. You may see them a little sooner than your Haematologist, if Covid 19 has not shut down treatment where you live.

AlisonT2 profile image
AlisonT2 in reply to MLNC

Thank you for your advice I will certainly have a word with them. Hoping they will be open for appointments on 15th. Take care and stay safe x

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