High Platelets

[Leelee22]

My platelet count usually run in the 500 to 750 range. However over the past six months I’ve been running in the 900- Hematologist not really concerned because I do not have a spleen and says it’s secondary thrombosis. However I just had another blood draw and now it’s 1832 Its doubled in a month. I have been feeling very poorly for the last six months and more so in this past month. I had a hip replacement in December and healed well. So not sure if I’m feeling poorly because my platelet count has been high or my platelet count is high because something else is going on that is causing the high platelets. I’ve been having issues with the one side and my throat during this time also, ear fullness same side, trouble swallowing. No answers. And my hematologist won’t be in the office until Monday and he hasn’t seen this new platelet count yet. Im concerned and feel so lousy. Feet swelling randomly as I speak.

[AussieNeil Administrator]

Hi Leelee,

I see that this is your first post to this community, which supports those with Chronic Lymphocytic Leukaemia. It's not clear from your post whether or not you have this diagnosis and whether you have had or are currently on treatment. It is rare (but can happen) for those with CLL to have a high platelet count, but extremely common to have low counts.

Your concern is understandable, but I would have expected that your specialist would have contacted you after receiving your latest results if they were concerned. (Or perhaps you received your results while your haematologist was on leave or had left for the weekend?)

By all means contact your specialist first thing Monday morning. If you continue to feel unwell and don't have an after hours contact number for someone with the relevant medical training to help you, then your best option is probably to visit A&E/Emergency at a nearby hospital.

Neil

[Indie1234]

Hiya Leelee, I also had quite a high platelet count. Many years ago after numerous tests I was diagnosed with Essential Thrombocythemia. My platelets were normally between 700 to 900 routinely. I used to bleed a lot from small wounds, and also bruise easily. My only treatment was daily Asprin. In 2008 I was diagnosed with CLL, stage 0, Watch and Wait. Since the cll diagnosis, my platelets have gone down considerably, and they now sit around 200. Maybe that is one small benefit of Cll...reduced platelets. Good luck with your follow up appointments. All the best.

Indie.

[DarDar1313]

My husbands counts went up like yours, scarry, but they dropped again to his 50k level then to 85k now 99k and the Dr said he has had a cycle of up and down which can be normal for him. He is not on CLL meds or Chemo. He selected to follow a eastern herb, treatment routine. After 8 years it may have done something or it's a great placebo.

Be well, and enjoy each day.

My thoughts are with you.

[krperez]

Leelee, I assume since you subscribe to this board on the CLL Support Assn that you have a CLL diagnosis. Your situation mirrors mine somewhat, in that my platelets have tended to be above normal for some years. I thought nothing of it, and my PCP said they don't become concerned until the level reaches 1,000. Recently, they jumped from varying between the 700s and 800s to 900. My CLL specialist had genetic testing done for certain mutations associated with Essential Thrombocytosis (Essential Thrombocythemia). One of the mutations showed positive, and I now have an ET diagnosis in addition to the CLL. ET used to be viewed as a "disorder" and more recently has been labeled a Myeloproliferative Neoplasm (MPN). (You can read about it on the web -- various organizations have educational pages on ET. My local oncologist says that blood cancers can come in twos (and threes -- oh goody!) sometimes. I'll admit to some surprise that your hematologist claimed you had Secondary Thrombocytosis (on what basis isn't clear) and didn't check for the two most common mutations occurring with ET. I suggest you urge your hematologist to have genetic testing done. Hopefully, your insurance will help with the cost. If your doctor doesn't have access to a testing facility or refuses, I suggest you go to a specialist who does and who can determine whether you have ET or not. You are definitely not feeling well, and it's always best to know what one has to deal with so that you can be proactive. Wishing you a good outcome!