Im am 37 years old and I've been having blood tests every 6 weeks for months now as my platelet count has been slowly rising. My count before the latest one was 478 and my doctor that has been dealing with me said if it rises again he will refer me to a haematologist as I have been have headaches and dizzy spells on and off for a couple of years. ( i just haven't felt right in myself for a while) My latest count is 507 and a new doctor has looked at the results and said it is normal. Should i ring the doctors and request that my normal doctor re look at them or is my platelet count nothing to worry about and i should just leave it. Thanks xx
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Staceylou841
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Hi Staceylou, , definitely get in touch or go in and ask for your original Doc to be made aware of the increase. Whilst 478 isn't overly high it has crept up. Other than that have a further test in a month and see how that is but ask to see the first guy to discuss referral if still 500 plus. Others may advise different but in any event you sometimes need to take some control and push things if only for peace of mind.
Hi, thanks for your reply. I will get in touch with my normal doctor tomorrow and see what he says. I just didnt want the doctor to think i was telling him he is wrong lol. But for my own peace of mind maybe its best to get a 2nd opinion. My heamogoblin level is higher than it should be aswell so ill ask about that.Thanks
Definitely get the original GPs opinion on this latest development. You have a questionable platelet count with related symptoms.
I think some GPs use old data where the platelet cutoff for suspicion of ET was >600, whereas the WHO changed their criteria in 2016 to a persistent platelet count>450 unrelated to a secondary condition, maybe this is the reason why this particular GP claims the count is normal.
My GP referred me in 2016 to a haematologist because I had a persistent platelet count above the recommended >450. By the way, it was only 500/502 over a three month period. I had occasional dizzy spells too along with scintillating scotoma, I didn’t connect the dots, thought it was age related.
Long story short, I was diagnosed with ET (Jak2+).
Hi, thank you for your reply, I will be asking my original doctor tomorrow to have a look and see what he thinks. Hopefully he does something about it because I haven't felt right for a while. I will update on here once I've spoken to him. Thanks
When and if you receive a diagnosis your haematologist will take into account your thrombotic risk profile based on the WHO criteria. If you’re considered ‘high risk’ you will be offered cytoreductive therapy. However, it’s always your choice whether to start therapy or not.
At diagnosis, I was considered ‘high risk’ based on age >60 combined with the Jak2 mutation. I take hydrea, and it has suited me very well to date.
Despite what your risk profile is you will be monitored every 3/4 months.
Hi Carolyn, my bilirubin is still double what it should be but the new doctor has said its normal. I am definitely gonna follow up with my normal doctor see his opinion of my results. I will let you know what he says tomorrow thanks.
Hi Staceylou841, when I was first diagnosed my GP had spoken with haematology first and they advised him to try some meds first to rule out straight forward reasons (can’t remember them now). These didn’t work, I then had a referral to haematology.
As others have advised, you should be questioning the steady rise in platelets above the reference range. This is considered thrombocytosis. Thrombocytosis can be either primary (as seen in MPNs-ET, PV, MF) or secondary (reactive). There are a number of conditions that can cause secondary thrombocytosis including iron deficiency, bleeding, inflammation, infection, injury, etc. Most people with MPNs will have one of the three driver mutations in hemopoietic stem cells (JAK2, CALR, MPL). A smaller number of people with MPNs do not have any of the three mutations (triple-negative).
You found your way here, so you likely have already seen the term Essential Thrombocythemia. This term does mean something specific. Here are the WHO diagnostic criteria.
Essential thrombocythemia is a diagnosis of exclusion. The 2017 World Health Organization (WHO) diagnostic criteria for essential thrombocythemia include 4 major and 1 minor criteria. [4] Diagnosis requires meeting all 4 major criteria or the first 3 major criteria and the minor criterion. The major criteria are as follows:
1. Platelet count ≥450 × 109/L
2. Bone marrow biopsy showing megakaryocyte lineage with increased numbers of enlarged, mature megakaryocytes with no significant increase in neutrophil granulopoiesis or erythropoiesis and, rarely, minor reticulin fibers.
3. Not meeting WHO criteria for CML, polycythemia vera (PV), primary myelofibrosis, myelodysplastic syndromes, or other myeloid neoplasms.
4. Presence of JAK2, CALR or MPL mutation
The minor criterion is the presence of a clonal marker or absence of evidence of reactive thrombocytosis (eg, infection, inflammation, iron deficiency anemia).
The two things you listed, headaches and dizzy spells are symptoms known to be associated with ET and other MPNs, So is that more general sense of not feeling right. These secondary symptoms are often more problematic for us than the primary risks of ET.
MPNs are rare disorders. Many doctors are not familiar with how MPNs manifest. This includes many hematologists. The best way to ensure optimal MPN Care is to see a MPN Specialist. Here is a list of patient recommended doctors.
As others have recommended, definitely follow up on what is going on. You may have to be assertive to make this happen. Assertive patients receive higher quality care. Passive patients do not.
Thank you for the detailed reply. I will be speaking to my normal doctor tomorrow just to put my own mind at ease because my bloods have always been normal until the headaches, dizziness and palpitations started and thats when my platelets have started rising also my haemoglobin levels are slightly above where they shoukd be. I will see what he says and let you know. ThanksBest wishes
What is going on could certainly be some form of a reactive or secondary issue. however, if your erythrocytes (HGB, RBC, HCT, etc.) are running high, then assessment should also include ruling out PV. This should be automatically done as part of you assessment for a possible MPN.
Diagnostic criteria for PV as per the 2016 revised World Health Organization (WHO) guidelines include three major criteria and a minor criterion. Diagnosis requires the presence of either all three major criteria or the first two major criteria and the minor criterion.
Major WHO criteria are as follows:
1. Hemoglobin >16.5 g/dL in men and >16 g/dL in women, or hematocrit >49% in men and >48% in women, or red cell mass >25% above mean normal predicted value
2. Bone marrow biopsy showing hypercellularity for age with trilineage growth (panmyelosis) including prominent erythroid, granulocytic, and megakaryocytic proliferation with pleomorphic, mature megakaryocytes (differences in size).
3. Presence of JAK2V617F or JAK2 exon 12 mutation
The minor WHO criterion is as follows:
Serum erythropoietin level below the reference range for normal
Criterion 2 (bone marrow biopsy) may not be required in patients who have sustained absolute erythrocytosis (in men, hemoglobin/hematocrit of >18.5 g/dL/55.5% or in women, >16.5 g/dL/49.5%) if major criterion 3 and the minor criterion are present. However, bone marrow biopsy is the only way to detect initial myelofibrosis, which is present in up to 20% of patients and may predict a more rapid progression to overt myelofibrosis.
None of this is to say that is what is going on for you. It does help to understand the terms and definitions as you enter into the diagnostic process. as monarch5000 indicates, there are some additional tests that will need to be done.
Here is a great video about your CBC that will give you some working knowledge when you talk to your docs.
Hi Hunter hope your well, im not sure weather you will know the answer to this. On my medical notes my serum folate level have come back today and a doctor has said its abnormal and low. I cant seem to get in touch with him to ask him anything. Could this be the reason my platelets are rising? Do you know if there a link between the two? Thanks
Severe folate deficiency can cause thrombocytopenia (low platelets). I am not aware of it causing thrombocytosis. Iron deficiency on the other hand, can cause reactive thrombocytosis. Iron deficiency would also lower HCT and HGB. There is a condition called folate-deficiency anemia as well.
The broader answer to your question is that your body is an integrated system. levels of critical nutrients and your blood cell levels do interact in complex ways. You are right to be asking questions about how it is all linked. Suggest this really needs to be reviewed by a MPN Specialist to give you a complete answer.
Thank you for replying sorry to ask you questions. My doctor is away for a few weeks so the new one doesn't seem to be interested. My HGB is slightly over the "normal range" so definetly not low. I will just have to push for them to send me to one so things can be ruled out. Thanks
You do have to all and make an appointment. So not an immediate solution. Long-term, it is really important to have a MPN Specialist on your care team. Most docs do not know much about MPNs. Even hematologists. hat is why this type of ongoing consultation is so important.
I can’t understand your GPs attitude. A persistent platelet count above 450 warrants investigation. Raised haemagloben levels are another red flag. Your presentation sounds very similar to mine. Platelets 500, hgb slightly raised at 16.1.
I see you live in Birmingham. I believe the Queen Elizabeth hospital has a good reputation. You could make an enquiry to their haematology department to see if they have anyone on the team specialising in MPNs. I presume they would have. You could then ask your ‘normal GP’ to refer you.
Hi, no haven't found out anything yet. My platelets are still on the high end. My doctor has referred me twice to a hematologist and twice they have said to re take my blood and see before they take me on. So I have blood tests next week to see what my platelet count is this time. X
Staceylou, is your RBC count at the high end of normal too? If so, you might have very early stage polycythemia vera. To follow up on this possibility I would suggest asking your regular doctor for a erythropoietin (EPO) blood test and a Lactate dehydrogenase (LDH) blood test.
A low or low normal test value for the EPO test (around 2-5) would add to the suspicion of possible very early stage polycythemia vera as would a slightly elevated test value for the LDH (around 220 or higher).
If both tests signal suspected polycythemia vera or essential thrombocythemia , your regular doctor should be willing to refer you to a hematologist to undergo blood testing for the primary driver mutations (JAK2, CALR, MPL) and a Bone Marrow Biopsy to confirm the diagnosis.
The good news in all this is that the earlier PV & ET are diagnosed, the better the chances the immune system boosting drug interferon alfa can fairly quickly normalize blood counts, ease symptoms and enable the patient to enjoy a durable, potentially lifelong stage of "minimal residual disease".
Personally I would insist on being referred to a haematologist as it is the trend of rising platelets that is important. They are now outside normal range. Shame you have to fight your case. They should be doing it automatically for you. Please let us know how you get on
Hi thank you for the reply, I dont think im going to get anywhere. The new doctor doesn't seem interested. He said he will speak to haematology if its going to help with my anxiety 😕 . I told him im not anxious im just frustrated. So we will see but I won't hold my breath. I will let you know if anything happens x
Platelets fluctuate daily, so you can get a different reading every day. My platelets are higher than yours but my haematologist will only worry when they reach 1000. I don't get headaches, although I am an ex-migraine sufferer.
Definitely ask for referral to haematology. I was messed around for 3 years always told bloods normal. Insisted after lockdown for in depth bloods & amazingly 2 days later I was in hospital being told I had ET. Reading then 590 yet Doctors really we’re not concerned. Absolutely crazy attitudes at GP surgeries . I fought to get bloods sent for proper testing not just average health check. Wasted 3 years almost being told normal. So definitely push . Julia. Exeter. UK .
Hi Julia, did you ask the docs for more in depth bloods or hospital. Did you have any symptoms before you found out you had ET. My normal doctor is away for a fair few weeks so the new doc that is dealing with me does not seem interested at all. I have been asking him if its normal for me to not feel right and have constant headaches for over a year and he keeps saying its anxiety. All because I had a bad few anxious months 6 years ago when my uncle suddenly passed away. So now when I'm telling them how I feel and that my platelets shouldn't be rising with every test he says im just anxious 😕 xxBest wishes.
Stacey it took me 5 visits to Drs to eventually get bloods done I asked for. All my bloods came back normal allegedly they told me. However I had shoulder injury in October & was not repairing I was concerned I maybe had bone cancer as I heal well normally. Doctors thought it a crazy suggestion reluctantly took bloods & rang me to say all fine. I persisted between October & February & actually lost my temper in end as bloods I asked for we’re just not right. That Doctor actually sent them off for Haemotology to check & next day I was called there. More bloods sent to another laboratory & yes I had ET & told very lucky I persisted. The upshot is I could have been at my gymn & had a stroke or heart attack not knowing I had anything. Just ask for in depth blood checks with your nearest Haemotology to check them . If you are not right only yourself knows. Just insist . Good luck. Julia Exeter UK .
Hi, I had rising platelets of about 20 to 30K per year for about 10 years and my GP always told me not to worry it was normal and if it went over 600K then he would refer me to a hematologist. When platelets hit 555K I went to a hematologist and after many blood tests was diagnosed with ET Jak2+, that was in 2018. In 2021 I advanced to PV. I also had headaches and dizzy spells initially. So if your trend is a ever increasing platelet level, it is probably in your best interest to be evaluated by a hematologist for further testing, they should be able to diagnosis the cause of your increasing platelets. Best to you.
Staceylou841, your dealing with a chameleon whose colors change but still remains a chameleon. Hunter points true North, see a MPN specialist STAT. Your current care team have served their purpose of raising your awareness now see the specialist who can better serve you and has the tools for a proper diagnosis and ongoing care.
Hi everyone, thank you for your replies. My doctor is off for a few weeks so spoke to another doctor, he said that my platelets rising each time outside of the "normal range" is fine and nothing to worry about . I said what can be causing the things I'm experiencing and generally feeling off all the time. He said he's not sure he will speak to a haematologist and see what they say. I dont hold out much hope though I suppose I just carry on like I have been and see if anyone gets in touch with me.Best wishes everyone.
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