Elevated platelets

[faith949]

Hi I’m 37 with my platelets at 1,450 been having this issue since 2016 my doctor has no clue still and she’s just monitoring me. I am extremely frustrated she keeps telling me that my blood is like that of an older person . Anyone else have the same issue? 😢

[Jmp89]

Have you been diagnosed with anything yet? Had a BMB yet?

[faith949 in reply to Jmp89]

Yes my bmb was normal and my doctor still can’t figure it out, I think I spoke to you before? Are u in SoCal? I need a better doctor I swear my doctor gave up she’s just monitoring me my platelets went up to 2,000 last year😓

[Jmp89 in reply to faith949]

Yes in in SoCal! I live in Chino, but my hematologist/oncologist is in Anaheim. I have Kaiser. What insurance do you have? I’m alarmed that she hasnt at least tried to reduce your count.

[faith949 in reply to Jmp89]

I have blue cross blue shield, she tried but the lowest it went was 700 and it didn’t stay low for long and recently jakify and hydroxyurea stopped working for me so idk what to take next . I’m in laguna hills.

[hunter5582 in reply to faith949]

Have you tried a course of PEGylated Interferon yet? (e.g. Pegasys)

[Jmp89 in reply to faith949]

Id imagine even the 700s are surely better than 1000+ though. Im still on Hydroxyurea & baby aspirin and have been averaging btwn 700-800s. Have you tried Anegrelide. My numbers were normal with that but the heart palpitations for me were horrible. Ive heard others do well on it though. Or Interferon.

[Hidden]

wow this is not good! Your platelets are very high! My platelets were first picked up by my GP in 2015. They were 7700. I might add this was a random blood test because I was having some palpitations. She waited six weeks and retested, same result, referred me to a Haematolgist without hesitation. After Gene blood tests a bone marrow biopsy i was diagnosed with ET. And to note I was put straight onto aspirin 100mg. I would have thought she might have done that?? 6 years down the track my platelets last check were 645,000, classed as stable. I have no physical symptoms with this disease so I am able to carry on with life. I am almost due to retire at 69! Shift work as a nurse to add.

You will certainly get some good advice from this site.

Good luck, Lyn NZ

[faith949 in reply to Hidden]

Thank you, my doctor is baffled she keeps saying all her patients are in their 60’s and that she is so confused why my platelets are so high. I been on jakify and hydrea both did not work or just worked for a few months 😓 so frustrating.

[Mwalimu in reply to faith949]

Insist on being referred to a haematologist. Sallie

[Mostew in reply to Hidden]

Did you mean hundred not thousand . ? 7700sounds off the scale ?

[piggie50 in reply to Mostew]

UK measures them differently. Knock a 0 off for other countries.

[Mostew in reply to piggie50]

Thank u. i did wonder!!!!!

[faith949 in reply to Mostew]

It’s in the thousands

[Mostew in reply to faith949]

So 7700 I u s is 770 in UK mine 880. steady for 1 year. Feel fineEveryone effected differently. How are your other bloods

[Hidden in reply to Mostew]

No they are more than a hundreds, they are written on your blood results 740 or 645 which mine are now, but x 10. (9) /L (150-400) classed as normal this is exactly how it is written.

All the white cell results are also x10.

[PrinceA]

Hi Faith

Are you from California ? I'm from LA.

Ask your dr to refer you to MPN specialist

This is what I'm doing now. I have appt in USC to see MPN specialist next month.

[faith949 in reply to PrinceA]

Hi prince

I’m in California in Orange County, I have a mpn specialist but she has no clue 😒 getting a second and 3rd opinion I’m scared.

[PrinceA]

Yeah that's frustrating, get 2nd and 3rd opinion if needed. Best of luck to you. Keep us posted.

[nightshadow]

Glad you are going for another opinion. Hope they find something. I'm not surprised you're scared, I know that for me even negative news is better than not knowing what is going on. I'm also in LA working with a doctor in Keck medical center. Haven't been diagnosed long enough to know whether she would be able to help.

[Angieboo98]

You need to have a bone marrow biopsy. I had very high platelets as well and was diagnosed with myeloproliferative disorder Essential thrombocythemia

[faith949 in reply to Angieboo98]

I did the biopsy it showed small signs of fibrosis at the first one then second and third one was normal 🤷🏻‍♀️ going to see an mpn In Beverly Hills on Monday hopefully he will know something.

[Melanie66 in reply to faith949]

Hello faith949 ...sounds as though you’re having a tough time .. I think (even the real experts ) don’t know that much about these blood diseases...I think the very nature of blood cancers are extremely difficult to understand /manage sometimes ...

I have Et /Jak2 ...my platelets are ok for a while then go up and come down again (without change to medication ) .?Ask for a haematologist who specialises in Mpn and I’m sure you will get the answers your looking

for ...hope you get the answers you want ...Lainie 😘

[faith949 in reply to Melanie66]

That’s the thing I don’t think it is ET 😒 there are inflammation markers in my blood test but no idea from what... thank u 🙏 hopefully soon a doctor can tell me what’s going on.

[Melanie66 in reply to faith949]

Hello again Faith949 .,Please keep us posted ...

[Deefen]

I think you need to see another doctor fur a second opinion

[Wyebird]

Hi I’m really glad you are seeking a 2nd opinion. It’s taken 5 yrs to get my medication right. My platelets would increase so would my meds. I’ve been steady for about 15 months now. Phew! I’m on anagrelide and hydroxicarbomide. What was your hydroxi dose? Mine started at a12 x500mg a week now it’s 16 plus 9x500mg of anagrelide.

Good luck x

[soisew]

GET ANOTHER DOCTOR

[hunter5582]

Definitely time to see another hematologist. can't help but to wonder how much of a MPN Specialist your current doc is. Just in case, here is a list of MPN Specialists mpnforum.com/list-hem./ .

You might want to consider going to one of the major hospital/research centers for your care. Someplace with a MPN Clinic that specializes in these rare disorders. I go to Johns Hopkins MPN Clinic for my yearly consult for PV treatment. I also have a really great local hematologist who handles n my ongoing care.

I recently did a more advanced form of genetic testing, a MPN Myeloid Panel. The panel I used was the Intellgen Myeloid Panel for MPNs. Note: there are multiple panels so you have to be sure the doc orders the right one. integratedoncology.com/test...

From your comments I am thinking you are presenting as a triple negative ET and that all causes of secondary thrombocythemia have been ruled out. Something you may want to discuss with a truly knowledgeable MPN Specialist is the emerging research on additional driver mutations that can cause MPNs. This is just one example.

ncbi.nlm.nih.gov/pmc/articl....

I hope you get some answers soon. All the best to you.

[margaritampn]

Hi Faith,

I am from Los Angeles and I just saw Dr. Schiller at UCLA in Santa Monica. He specializes in MPN. My platelets are anywhere between 1.1M-1.3M.

I am on Hydrea right now at 500mg. I did a BMB and it came back inconclusive.

I did a phlebotomy yesterday to reduce my red blood count.

Please try to see Dr. Schiller at UCLA. He seems to be very knowledgeable and hopefully you can get some answers. I’m sorry you’re going through this.

[Hidden]

I was eventually referred to a haematologist who took special blood tests and said I have ET and JAK mutation. I am on hydroxycarbamide and have regular blood tests to check patelets are lowering..ask to be referred

[Doggy1903]

Good morning .If your doctor is willing, would you be able to ask for a referral to haematology. I had a similar happening in that my GP did not know why my platelets were raised. Once my first appt with haemo was underway, the hospital team have been great and will work out what your bloods are up too.Really wish you well and please let us know how you get on.

😀

[faith949 in reply to Doggy1903]

Yes I currently have a mpn specialist from Uci in Orange County ca she even has her own lab but she is also not sure what’s going on so I’m going to a new hematology doctor tomorrow in Los Angeles.

[Doggy1903]

Wishing you well. So hope your new specialist can check out what is afoot. Take care.

[Cja1956]

I know I’m late to the discussion and you’ve gotten some great advice. I was diagnosed with a ET Jak 2 positive in 2008. My platelets were only around 600. I stayed with the same hematologist for 10 years. He was not an mpn specialist. Around 2017, My red blood cell count started to drop and my platelets kept going up. He couldn’t seem to figure out what was wrong. So I switched to an mpn specialist in 2019. Her bloodwork included tests I’d never even heard of. She also did a second bone marrow biopsy and ultrasound and I was diagnosed with post Et MF. I guess what I’m saying is your platelets do seem very high to me and I agree with the others you should keep on looking for a new hematologist. I found mine at Cleveland clinic and it took me months to get an appointment with her but it was worth it. I found her on the MPN connect website. Good luck to you. I hope you find answers soon.

[Green1445]

Must have a great specialist like mine! My Hemalologist told me to drink 5 times the 40-50 ounces of water a day I already drink and he'd see me in 6 months. I'm done with doctors.

[faith949 in reply to Green1445]

Wow 😳 some doctors really don’t know anything 🤨