Hi everyone. Just found this site after playing “google dr” like so many others. Annual blood test shower platelets of 580. Have appt with hematologist in November. Im scared to death but was very nervous when i had my blood drawn because i knew next, was a follow up chest xray. Back in march 2020 i got very sick with severe violent coughing and was on round after round Of antibiotics and prednisone. Long story short, over the course if a few months (this started nov 2019) i broke 6 ribs, suffered a pneumothorax ( partial collapsed lung). I saw a pulmonologist who also diagnosed me with mild/moderate COPD ( but i was still in pain from the broken ribs and couldn’t do well on the spirometer test)... anyway... here it is 7 months later and my platelets are 580... in 2019 they were 494.. im scared to all hell but have read that injury can cause higher platelets. Im praying thats the reason for this. When you first see a hematologist, do they just do blood work? Im also scared of bone marrow biopsy. Im just a wreck right now and could use some encouragement!! Thanks for listening anyway.
Gina
Written by
Gmz427
To view profiles and participate in discussions please or .
Hi, all the best for your appointment. Having been under a haematologist for over 5 years I have always found them really pleasant and reassuring ( some more than others of course). They usually ask for a blood test before the appointment (used to be as I arrived at the hospital but now I have it done a week or so before) to have up to date figures. Depending on the course of treatment you might need more tests ( I had an ECG after the first appointment because of the treatment he had in mind but didn’t have a bone marrow until 2 years in and I have had a full body X-ray/scan because of some dodgy results on my light chains but it has been stable for 3 years now).
My platelets went up to over 900 at some point but are now just within the normal range through treatment but for some time I only had aspirin.
Have a read at this platform, there are so many people with similar conditions and I found that reassuring and once you start talking to people you realise how many have similar issues. I found 3 in my extended friendships.
Always best to get these things checked. My GP left my platelets high for three years. Only when they reached 1400 did they refer me to a haematologist. Good luck
I really wouldn’t worry about your upcoming visit to the haematologist. For a start there are lots of innocuous reasons why you might see an elevated platelet count. But even if an MPN is suspected the key thing is early diagnosis and early intervention. It’s a chronic disease and people tend to live out normal life spans and without huge impact on their lives.
As to your haem visit. You’ll likely get more blood tests and possibly a scan of your chest / abdomen (they’ll want to check your spleen size). It’s possible they will order a bone marrow biopsy but not necessarily - lots of MPNers have never had one. The procedure definitely sounds far more traumatic than it actually is!!! I’ve had two.
Understanding and management of MPNs has changed beyond recognition in the last decade so best steer clear of Dr Google. Some information out there can be very misleading - and unnecessarily alarming. Stick with the MPN Voice website for reliable and up to date info.
hello Gina, completely understand how worried you are, you have certainly had a rough time. It is good that you are being seen by a haematologist for further tests, at least then you will know whether or not you have a MPN, and it may not be necessary to have a bone marrow biopsy. When you see the haematologist take a list of questions with you, it's much easier to write it all down before you go so that you don't forget to ask something important, the main questions are:
how long will the results take to come back
when will you be followed up to discuss the results
if you are diagnosed with a MPN, which one is it
what treatment plan/options will be put in place, i.e. medication
how often will you be seen in clinic
can you have the contact details for the haematology nurse specialist so you can contact her/him for advice
and if you can, take someone with you to the appointment, it always helps to have someone with you to listen to what is being said.
Hi Gina, I found my first consultation with a haematologist very reassuring. They just did a blood test on the day, results within 30 min, which showed very high platelets (over 1000). They explained it could be an MPN and sent the bloods for further analysis for genetic mutations. They reassured me about the prospects for MPN patients (normal life expectancy if well controlled) and that there are effective treatments. I went back a month later and found that the genetic tests revealed that I was JAK2 positive, which confirmed the MPN diagnosis. Initially I was diagnosed with Essential Thrombocythemia (ET), but this later changed to Polycythemia Vera (PV)as the red cells also became elevated. I have not had a bone marrow biopsy, the PV was confirmed with a nuclear blood test. I am treated with aspirin and Pegasys interferon and have a normal life, with well controlled counts. So don't worry too much - what is key is to get a diagnosis either way so you can start monitoring and controlling your counts. I wish you all the best. Susana x
Hi Susana. I have a question about your progression. When one MPN progresses to another, does the initial MPN go away? You had ET first and now PV so does that mean you no longer have ET and your platelets are back to normal?
Hi, it was not progression in my case. My haemo believes I probably had PV all along. But while I was having my periods, it was masked, as the monthly blood loss acted as a phlebotomy and kept the red cells in check! So the initial diagnosis was ET. Once I stopped having periods, which was a few months after diagnosis and before I started any citoreductive treatment, the hematocrit started rising, along with the platelets that also continued to rise. With PV you can have both high hematocrit and high platelets which is what I had: at my worst, my platelets were 1.5 million and HCT was 0.50. I suppose if I had had a bone marrow biopsy they would have detected PV from the start. But it made no difference to the treatment: I was put on Pegasys that lowers all counts! xxx
Glad you found your way here. We certainly all understand what it is like to be in your shoes right now. Others have already given you great feedback, so I won't repeat. You should find out in short order whether your thrombocytosis is primary or secondary. Then you will know how to handle it. Rest assured, you will be able to handle it.
FYI - I was diagnosed with Essential Thrombocytosis about 30 years ago. It progressed to PV about 7 years ago. At age 65, I am still alive and kicking! I have had a good life and continue to do so despite a few challenges of late. Don't let the scary stuff you see Googling about alarm you unduly. Even if you do have ET, it can be managed.
All the best to you. Please let us know what you find out.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Platelets up and other blood results!
Elevated platelets - help
Increase in platelets 
Slightly raised platelets
High platelet count and no answers 
