Suprise after blood test

[jillydabrat]

Before I went on holiday last week I had to have my INR blood taken. The result showed a reading of 1.8 whereas my range should be 2.5-3.5 so my blood was too thick. I am on lifetime warfarin after having 3 DVT’s. My warfarin dosage was adjusted and I went on holiday. On the Monday we were having a coffee at a cafe and my husband alerted me that my gums were bleeding. The same night I started coming out in bruises all over my legs. When I got back home to have my INR checked I was well expecting that my blood had gone too thin, after all what else would cause the bleeding and bruising? I was very surprised to find that my blood was still to thick. My doctor was buzzed and she told me I have to have FBC and other blood tests to see what is happening with my liver. Of course I am worried as PV can cause problems with the liver so it’s a waiting game now. She has also ordered x-rays of my knees because I was crippled walking the hilly, cobbled streets of Whitby, in fact I gave up and told everyone to go without me.

[clubdino]

Question...what was your last platelet count?

[jillydabrat in reply to clubdino]

I don’t know what my count was but my last tests were 8 weeks ago and I was told everything was fine then

[clubdino in reply to jillydabrat]

Hmm...could be a platelet issue. Or clotting disorder...those are so complicated I have a hard time fully understanding them. Maybe something is up with the warfarin. Could be so many things. I hope your knees feel better soon. You may want to ask for a copy of your blood work results...I learned the hard way that sometimes doctors don't tell you about abnormal things.

[Lifam in reply to jillydabrat]

I have blood test every two months to monitor my platelets and other blood counts, also kidney, liver and the rest. And my Dr will print me a copy of the result. First thing my Dr and haematologist tell me is my platelet counts. I personal think it's important for us to know our test results in detail, and we are entitled to have a copy of our blood results.

[hunter5582]

Sorry to hear about the latest foray into the MPN jungle. Something I have discovered with my variant of JAK2+ PV is that I seem to be more risk for bleeding than clotting. This happens more than is commonly realized. Have you been checked for Acquired von Willebrand Disease? This is also much more common than is commonly known per recent research. have no idea whatsoever whether this applies to you, but you might want to check it out. AcqvWBD does not present the same as the Congenital vWBD.

My own experience if that my vWB factors tend to decline as my platelet levels go up - particularly when then get towards 700+. I did go through the testing sequence for AcqvWBD - which ultimately was negative. However, I still tend towards excessive bleeding and bruising if I take even low-dose aspirin. The MPN Specialist I see took me off aspirin as it was not a good idea in my case.

FYI - the regular hematologist I see (not the MPN Specialist) did not know how to do the testing panel for AcqvWBD. I had to give it to him. Found it in this article hematologyandoncology.net/f... .

All the best to you.

[jillydabrat in reply to hunter5582]

Thanks Hunter, you continue to amaze how you find all this information. Unfortunately, not having a medical background I didn’t understand 98% of it but I did pick up that, in rarer cases, it can be found with PV. Thanks for finding this, I am going to print it out and show my Haemo. Best wishes x

[hunter5582 in reply to jillydabrat]

I am actually not a medical professional either. My background is in Clinical Psychology. Because of that, I did learn how to do research. I have to do LOTS of extra reading when I dive into the professional journals to understand all the terms. Over time, I am learning a bit more each time. Due to the other medical adventures I have been having, I am learning a lot more about neurology, cardiology, genetics, cell biology, and basic physiology. Starting to think I might need to go back to graduate school and get another degree.

There was a really interesting article I read that was posted on this site. My computer crashed and I lost the link. I am going to track it down. The gist was that Acquired von Willebrand is far more common than is commonly realized and that it occurs with a platelet level far lower than the 1+ millions. Here is a similar article ncbi.nlm.nih.gov/pubmed/279... .

My own experience is that even in the absence of diagnosable AcqvWBD, you can still tend to bleed too much. We can each respond to our MPN differently and our responses can change over time.

Hope you get it all sorted out ASAP.

[Cja1956]

Sorry to hear you are going through such a tough time. I hope your doctor can sort it all out. Let us know.

Best wishes,

Cindy

[Wyebird]

It’s awful not knowing. Hope everything turns out fine for you x

[mhos61]

Hope everything gets sorted quickly. Please let us know how you get on.

[harleydavidson]

Hi Jilly. That all sounds horrible. I hope you get it all sorted quickly. Thinking of you. Mel x

[jillydabrat]

Went today to have my blood tests done and yesterday I went to have the x-rays done on my knees. Instead of referring me she told me to go to the drop in clinic at the hospital. I had to wait three and a half hours! Even though I stood there with 2 walking sticks not one person offered a seat. I would never have considered taking up a seat when someone was standing and struggling

[Jlah in reply to jillydabrat]

Hi Jilly

NHS is a puzzle. Today I went for a cat scan at 5.20. Got there at 4.45 and had it straight away. Last week eye appointment 2 hours wait! Hope you are resting now. Jacquie x

[Hidden]

Hi Jilly just noticed you have not wrote anything recently and you were having problems Hope you are okay and well you are in thought x

[jillydabrat in reply to Hidden]

Thanks my lovely, nice of you to keep me in your thoughts. I am enjoying a lovely week away with my hubby this week. It has rained constantly but our dogs are away from the stress of fireworks. Doing fine at the moment. Take care and thank you for thinking of me xx

[Hidden]

Brilliant news We have had to cancel a break and a second try recently didnt go well lol But going to make up wiv a booked weekend end of Nov Enjoy yor break happy to hear u doing ok wiv your hubby and co xx Take care