declining platelet count & decrease activiy Factor VIII?

Posted by Baxter @baxter123, Sep 13 12:07pm

Hello,

I'm looking to understand what would cause a downward trend in platelets slowly over 5 years (or more). It also appears that I have reduced activity of Factor VIII. Blood work such as ANA, lupus anticoagulant, anti-cardiolipin, and a few other autoimmune tests have come back negative, so a few retests have been ordered. I'm trying to understand if I should be looking for something more since it hasn't plateaued or just consider it as ITP.

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shelleyW | @shelleyw | Sep 13 8:24pm

Baxter,
I have had elevated platelets for many years, the last few it has come back down in "the " normal "range. I have never had any symptoms either elevated or decreased. I do have autoimmune disorders, 3 +. I am seronegative for many of the tests.
What is Factor VIII?
What do you have, or what symptoms?
ShelleyW

Baxter | @baxter123 | Sep 14 8:53am

In reply to @shelleyw "Baxter, I have had elevated platelets for many years, the last few it has come back..." + (show)

Hello @shelleyw,
Factor VIII is one of the coagulation factors. I have low activity. In terms of symptoms I have low energy (constant and even when waking up after good sleep), body aches randomly, night sweats (frequent but not drenching, very cold room), and joint stiffness (mostly knees and hand joints with dull aching or minimum pain but also hip cracking without pain). I have other symptoms but these are the daily ones.

slkanowitz | @slkanowitz | Sep 15 7:58am

Can you share what your platelet count and factor viii level is? Most of the time this is autoimmune but could be a bone marrow suppression. As you probably know, you should stay away from aspirin and antiinflammatory drugs ( NSAIDS) as they interfere with platelet function and can cause bleeding. Are you having bleeding or bruising or petechiae( tiny red or purple dots on skin)? Maybe your new blood tests will shed light on this. Do you see a hematologist?

Baxter | @baxter123 | Sep 15 11:54am

In reply to @slkanowitz "Can you share what your platelet count and factor viii level is? Most of the time..." + (show)

Hello,
My latest platelet count is 117, still safely above 100 but continued to go down from 120 from my previous test 3 weeks ago. My WBC count is up to 4.2 from 3.3, my factor 8 activity is 38% causing my high aPTT but all other factors are good. I have bruising and the red dots on skin mostly on my lower legs. I have been seeing a hematologist but after my autoimmune tests came back negative a second time he is stumped and plans to consult a colleague.

slkanowitz | @slkanowitz | Sep 15 3:53pm

I would bet this is autoimmune and your test results just aren’t showing anything yet. It’s common with AI disease for symptoms to precede lab evidence by months to years. I have lupus and had numerous symptoms for a decade before my ANA turned positive, barely. With the fatigue, joint pain, low WBC, those are all symptoms of an AI disorder. Have you had anti platelet and anti factor viii antibodies run? Those labs would be very helpful. A rheumatologist would be helpful too to run specific AI blood tests and help symptoms so you feel better. Many meds can cause AI diseases and ITP , even Tylenol. I would look at side effects of any meds you take under hematologolical SE and see if any of your meds could be the culprit. Good luck getting answers!

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