Borderline high platelets: Hi all, My GP has... - MPN Voice

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Borderline high platelets

Lunarj profile image
24 Replies

Hi all,

My GP has referred me to a hematologist for a slightly high platelet count. The hospital cut off being 400 rather than 450. My platelets are only 453 currently and have been as high as 480 a few years ago and as low as 430 in between. I am debating whether I should really be referred as many places show the cut off as 450. Anyone with platelets barely elevated been referred and something was actually found? TIA!

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Lunarj profile image
Lunarj
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24 Replies
cmc_ufl profile image
cmc_ufl

See my profile. I am in a similar situation. Platelets 430-455 for 10 years. Was tested for all 3 driver mutations, everything came back negative. Currently being evaluated as possible triple-negative ET.

Many things cause high platelets, and some people have a naturally high baseline. Sounds like your GP is doing their due diligence by referring you. This forum is a great place for information. Please keep us updated with your future results.

Lunarj profile image
Lunarj in reply to cmc_ufl

Thanks for replying! Hope you gets your sorted out soon. I guess I will go to the referral and just let them check. In 2012 my platelets were 265 so they have certainly risen over the years. I just wasn’t sure if they were high enough to warrant investigation

cmc_ufl profile image
cmc_ufl in reply to Lunarj

Generally, since the normal range differs between labs, consistent counts above 400 will trigger an evaluation if the GP is familiar with MPNs (many aren’t, meaning many people go undiagnosed for a long time). Some labs use 450 as the high threshold, but that’s more common in the USA. My counts have been stable as far back as my CBCs are available. Yours being 265 in 2012 was probably the reason for the referral since this indicates a change over time.

Trocken profile image
Trocken

Hi, my platelets count had been elevated for at least 12 yrs before I changed GP surgery and they called a haemotologist for advice as no one had ever thought to get it checked out. I was seen a week later by a haemotologist and was subsequently diagnosed with ET Jak2+, I was 37 at the time. It’s important to know if you do have ET due to the risk of blood clots and strokes etc, age is also a factor, hence why we get put on medication to reduce our risks. X

Lunarj profile image
Lunarj in reply to Trocken

Thanks, yes I think it is important to just check it out. It was kind of a shock getting the call from oncology but I am settling into just getting it looked at

PrinceA profile image
PrinceA

Hi Lunarj, yes actually that is similar to my case, mine was barely elevated, about 450 when I was referred to hematologist and then tested positive for JAK2.

Lunarj profile image
Lunarj in reply to PrinceA

Hi, yes I was thinking I might just be wasting her time at 450 but seeing others diagnosed even that low is showing me the importance. Glad you are able to catch it early! Are you on treatment or just watch and wait?

PrinceA profile image
PrinceA in reply to Lunarj

Hi Lunarj, I'm just on watch and wait and take aspirin 4 days a week. I'm 49 and dont have previous events so considered low risk, all the best to you, it is better to get it checked out and not wait, please keep us posted.

Bluetop profile image
Bluetop

Hi I guess it depends on your other blood counts too and any symptoms. My platelets were much higher than that when I was referred, but in hindsight my platelets had been rising for some years. I don't think, in my case, if the PV had been picked up earlier it would have made a difference to my treatment, but I think I would have preferred an earlier diagnosis none the less.

Lunarj profile image
Lunarj in reply to Bluetop

Hi, yes I do have symptoms but I am not sure if related. Migraines for years and recent scintillating Scotoma (sp) and just feeling tired. I guess it’s better safe than sorry!

Wyebird profile image
Wyebird

Hi I know it’s something you don’t really want to face. Mine were in the 500s and had been for a year- prior to that they were under 300 for years. I think you are lucky to be referred so soon. You may have to wait a while until an appointment comes through . Better to be safe than sorry.

Lunarj profile image
Lunarj in reply to Wyebird

Yes I agree, definitely not something I wanted to see, but best to find out

CooperS1 profile image
CooperS1

Hi, my platelets were only just over 450 when picked up quite by accident when my GP ordered a full blood test after me seeing him about possible arthritis. I was immediately referred to a haematology consultant. My platelets continued to increase with each subsequent blood test and I was diagnosed with ET Jak 2+ Aug 2019. I was put on medication because of the higher blood clot risk associated with my age (I was 62 at the time) Once stabilised my platelets continue to fluctuate and have been 200 and up to 465. My understanding is that even some people without an MPN can have platelet counts which naturally fluctuate a lot, others may stay pretty constant. I also find it frustrating that some ‘medical professionals’ class 400 as the top ‘normal’ range others 450! In any case I am very grateful for the GP who was on the ball and referred me...better to know and the ET to be controlled than not and possibly suffer a serious blood clot!

Lunarj profile image
Lunarj in reply to CooperS1

Thanks for sharing! It is frustrating with the different cut off points. You are right better to know. Now the waiting game starts :)

Keepitpositive profile image
Keepitpositive

Hi I am the same. I went to see my Gp because of my breathlessness, dizziness. Sent for bloods which came back 575. Had different referrals to cardio, gyne to rule out diff things first which came back fairly normal. To cut the story short with all these test, my platelet sits around 490-with 595 being the highest for at least 8years prior. I was referred to haematology and has been sent for jak test, came back negative but I am Calr positive in frame deletion with allele burden of 40%. Sent for Bone marrow biopsy and although results are not completely positive its also definitely not negative as it showed some markers similar to ET. The geneticist had even commented that my case may well be a different type of MPN that they might have not encountered yet. I believe that comment made my consultant decide to keep me as their patient! I am currently being treated as ET with just aspirin as I am low risk being a ‘youngish’ patient and no other co morbidity.

I think its better to be referred then if theres nothing to be concerned of, at least you have someone looked at your case as a precaution.

All the best!

Lunarj profile image
Lunarj in reply to Keepitpositive

I think you are right, prob better that I have it checked out. I am 42 and even though the platelets aren’t super high I have had somesymptoms that fit. Crazy that yours may actually be a new type of MPN! Glad they are continuing to keep an eye on it!

CalrType1 profile image
CalrType1

Yes. In December of 2017 I was just above 450. I was diagnosed with Calr type 1 Essential Thrombocytosis in June 2018. I was age 59 at diagnosis. My platelets did elevate to 550 just prior to the diagnosis.

Lunarj profile image
Lunarj in reply to CalrType1

Thanks! I am def going to get checked out now. Nerve wracking!

EssThro profile image
EssThro

Hi, Lunarj.

My situation is somewhat similar, but I was your age 30 years ago. I would definitely recommend you keep your appointment with hematology.

My platelets run around 470 versus Mayo's upper limit of (only) 350 for ages 70 and below and 317 for me. Through 2018 my platelets hovered around 360.

When my diagnostic testing began in January, they found I was JAK2+ and the bone marrow testing found two more mutations and confirmed the ET diagnosis versus prefibrotic PMF. Two of the other parameters of interest to my MPN specialist are the RDW and MCV which have been at the high end of normal.

I wasn't all that pleased to get my diagnosis, but it helped to explain my occasional migraine and a couple TIAs. I'm fortunate not to have bad symptoms. I agreed to start on aspirin therapy and right away increased to low-dose twice per day. I resisted Pegasys at first, but my cardiologist teamed up with my MPN specialist to convince me that my history with clots, together with my heart defects and family history, made it more than a good idea to take it. I'm 5 days into my 45mcg weekly injection program and planning to be around for a good, long time.

All the best to you!

Lunarj profile image
Lunarj in reply to EssThro

Thank you! I think everyone is right and I should get checked out. I got a call from the hematology/ oncology today and waiting tofind out my appt date. Is the Mayo cut off 350? I haven’t seen a cut off that low. My other labs were fine last check, but I often run high WBC and my RDW was on the higher end. Hope you do well with the new med! 😊

cmc_ufl profile image
cmc_ufl in reply to Lunarj

The hospital which both my GP and general hematologist are affiliated with uses 350 as the high-end threshold for platelets. My MPN specialist says 350 is a “crazy low” high-end platelet threshold, and his hospital’s range is 140-440.

It is all about statistics, Gaussian curves, and normal distribution of data. Some hospitals are more flexible with their cut-offs (say 150-450) because they consider anything captured within the 99+% of the population as “normal”. Some hospitals with a more strict threshold (say 150-400) use the 95% parameters, keeping in mind that 2.5% of the healthy population will fall outside this range on either end and still be “normal”.

According to commonly accepted platelet ranges, 2.5% of the healthy population will have platelet counts above 400. This is why the ET threshold is 450 (although there are talks about possibly lowering this cut-off since many people are being diagnosed 400+ due to driver mutation testing being more routine and accessible).

Lunarj profile image
Lunarj in reply to cmc_ufl

Oh thanks for the info. That makes sense. I didn’t know how they came to those cut off points.

EssThro profile image
EssThro in reply to Lunarj

You are welcome, Lunarj! Yes, Mayo's "normal" range for people in their late 60s is 350. Perhaps it is higher for those in their 40s. I'm glad to hear that most of your numbers were in the normal ranges this time and that you are following through with the appointment. If you are diagnosed with an MPN, I hope you are able to connect with an MPN specialist.

Good luck!

Bobby_T profile image
Bobby_T

My Platelets were between 250 and 350 for the last 20 years, but they jumped to 430 this year. My Hemoglobin also jumped. My head constantly feels like I have a head cold - feels like there is a balloon in there. I've been referred to a oncologists. Is there anything I need to tell them (I want to write things down, because I do forget to ask questions in person)

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