Blood disorders and stroke

Hi Marlene,

Thanks for calling StrokeLine last week Marlene,  it is great you are reaching out on EnableMe.  Hopefully there will be others within the community who have similar experiences to you.  It would be good to hear from others about their own experiences.

Blood clotting disorders can increase the risk of stroke and can contribute to the formation of  blockages, leading to ischemic strokes. There are a number of ways in which blood clotting disorders can be linked to stroke. It is always best to talk with your Gp and treating specialists in regards to your own situation.

It's important to note that not all blood clotting disorders necessarily lead to stroke.

Protein C and Protein S deficiencies are relatively rare disorders that can lead to an increased risk of abnormal blood clot formation. These proteins play essential roles in regulating blood clotting, and their deficiencies can result in an increased risk of developing blood clots.  The severity of protein deficiency can vary, and not all individuals with these deficiency experience symptoms or complications.

Do feel free to call StrokeLine again on Ph 1800 787 653, or email us on strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AET.

Warm regards

Siobhan (StrokeLine)

Hi Marlene,

I had platelets that clotted to much and caused my ischemic stroke but the abnormality in platelets turned out to be self inflicted by stopping aspirin.

I had to fly from Perth to Melbourne because my brother had a heart attack and I forgot to take my aspirin medication with me.

I returned to Perth 21 days after stopping aspirin and had my stroke the next day. 

Platelets have a life cycle of 21 days and if you stop aspirin the next batch of platelets are more sticky.

Before the stroke I had also ceased taking aspirin when trekking overseas on about 5 occasions  and had also used aspirin as an anti inflammatory at high doses for an arm injury.

So there was about 6 times where I had previously stooped taking aspirin for a period about 3 weeks.

I should have known about this side effect of stopping aspirin as I worked in a pathology lab monitoring aspirin levels. 

But my GP did not alert me to the potential danger either.

Good luck,

Ian

  Hi Marlene, i am looking at having genetic testing for vascular Ehlers Danlos syndrome following my hemorrhagic stroke just over 2 1/2 years ago, for unknown reasons. J9

Hi Marlene, my stroke cause is unknown but suspected part of it is due to my Factor V Leiden disorder. I'm now on anti-coagulation meds for life, but a small price to pay. Do you have any cause known?

Hi Marlene

I had a TIA in November 2021. After I was discharged from Hospital, I saw a Stroke Specialist privately and their opinion was that it was a TIA and there did not some to be any concerning heart issues that would have caused it (for now anyway). But my blood platelets were high but not too high prior to the TIA. They were the highest at the time of the TIA though. Eventually I did see a Haematologist privately and was diagnosed with Myeloproliferative neoplasm (MPN) – Type: Essential thrombocythaemia (ET) which causes too many platelets and likely the cause of the TIA. I did have a bone marrow biopsy too. Because it relates to bone marrow cells growing and reproducing abnormally it is classified as a form of blood cancer but it is rare. It is considered chronic and you can live with it for a very long time. There are some gene mutations that relate to this but will not mention it as it is a complicated topic.

However here are some details relating to my journey for a diagnosis or cause:

• Before the TIA I was experiencing unexplained visual disturbances. I saw an Ophthalmologist and waseyes were fine. I was also seeing a Movement Disorders Specialist for an existing condition who also specialises in headaches and it was possible that it was a visual/aura headache. I now know that the visual disturbances was a likely symptom of the MPN. Headaches are another symptom.

• During my stay in the Hospital due to the TIA, a lumbar puncture was performed but a follow up appointment was not made after discharge to obtain the results but luckily, I was able to discuss the results with my Movement Disorders Specialist. It did rule out some other conditions/causes (there is more to this but will leave it there so I do not confuse you). I also discussed the possibility if the episode I had that landed me in Hospital was a type of Migraine not a TIA. I was informed it could have been but they could not rule out TIA either. But now there is supporting evidence that leads to a likely TIA – due to the MPN. BUT the symptoms of MPN can look like a TIA also. So, the question is was it just symptoms of the MPN I experienced or a TIA? Well, very difficult to know. However, in my cause there was some speech related changes at the time of the TIA and going by research it does not seem to be a symptom of an MPN – ET. So, I only have this one symptom to lean on to support that it was a TIA not just symptoms of MPN -ET.

• With MPN-ET management is also about preventing complications and so I am on low dose Aspirin to prevent blood clots. I take 1 every 2 days. Initially it was daily but I experienced bruising and so changed to every 2 days. The visual disturbances seemed to settle as well. The Aspirin would not stop the blood platelets from been high though. Another treatment is needed for this but at the moment in my case it is a wait and watch approach or monitoring approach. I am waiting for farther results relating to the gene mutations to as my case is abit complex and need to learn more.

One other thing to note I am aware that platelets can increase if you have inflammation or Anaemia etc. so this needs to be ruled out as much as possible. It can get confusing and so this is where seeing a Haematologist for an opinion is important

I hope sharing my details helps you. Have you had any abnormal Pathology results or diagnosed with a blood disorder Marlene?

Thanks for posting TIAMember. How are you going since your stroke? Can StrokeLine 1800 787 653 be of help? - Diana 

All I know is that a clot was not found in any scans but I have a continued protein C deficiency. Anti-platelets for life. I wish I had more of a definite reason why it happened. I always wondered if it was CVST???