This is my first post, I've been looking for forums to discuss what could be going on with me. To start , I guess this isn't related but my dad passed of CLL and B-Cell Lymphoma and my daughter had high risk ALL at 4 years old. After three years of treatment, we came out fine :). Needless to say, I keep an eye on my blood numbers. Back in 2017, my platelets were at around 400k and marked as high on my labs. Of course I got a little concerned and asked about it, pointing out my family history(what's that Taylor Swift song? Bad Blood? lol). They said it was nothing and could be temporary.
2018 I was at 430k, 2019 I was at 450k, 2020 470k, and in Oct 2021 I was at 500k.
My doctor finally referred me to a hematologist that had a 6 month wait. I didn't feel really bad or anything so I waited patiently. A few weeks ago, I started experiencing bad belly pain, nausea, dizziness. low fever (which I have had on and off but just chalked it up to viruses) and felt wiped out. I was hurting a bit in the bladder area so attributed it to a UTI and went to my primary for it. They tested and I didn't have a UTI. She ran a CBC and I had jumped to 600k on platelets but everything else looked okay, I was a little high on RDW and C Reactive Protein but barely over the limit. Not sure if that means anything. Anyway, she then tested for JAK2 which came back negative and then stepped up the referral to the hematologist.
I have an appt on Thursday the 14th and I'm so nervous. The past couple of years I've had all of this random pain. Flank pain, rib area pain... just blah like I've been in a boxing match but just a light one lol.
Guessing the history of high platelets points to something and not something acute but chronic? I'm 46.
I really appreciate being able to vent and have someone to talk to about this.
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Cesw1975
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Also, I meant to say that my test came back negative for JAK2 but back in 2018 I used my 23 and me results and pulled them into Promethease which shows any health related genetic issues. I have three sections in red. Does anyone know enough about genetics to know what any of this means?
rs12340895(C;G)
Increased odds (2 fold?) of developing V617F-positive MPN
23andMe blog People with a rs12340895(G) (equivalent to rs12343867 in the study) had nearly four times higher odds of developing V617F-positive myelofibrosis (MPN) compared to people without the variant. "23andMe recently replicated this association, though we see a smaller effect— in our database, people with a G at rs12340895 have about two times the odds of developing V617F-positive MPN compared to people without the disease. People with an A at rs3780374 in the JAK2 gene (equivalent to rs4495487 reported in the study and highly correlated with rs12343867) have about three times higher odds of developing V617F-positive MPN compared to individuals without the A version." The following SNPs are (all) associated with the JAK2 46/1 haplotype that appears to predispose to V617F-positive neoplasms; since they are all part of one haplotype (and are not independent of one another), having one usually implies having the others as well....
rs3780374(A;G)
Substantially increased odds of developing V617F-positive MPN.
23andMe blog At rs12340895(G) (equivalent to rs12343867 in the study) had nearly four times higher odds of developing V617F-positive myelofibrosis (MPN) compared to people without the disease. 23andMe recently replicated this association, though we see a smaller effect— in our database, people with a G at rs12340895 have about two times the odds of developing V617F-positive MPN compared to people without the disease. n A at rs3780374 in the JAK2 gene (equivalent to rs4495487 reported in the study and highly correlated with rs12343867) have about three times higher odds of developing V617F-positive MPN compared to individuals without the A version. The following SNPs are (all) associated with the JAK2 46/1 haplotype that appears to predispose to V617F-positive neoplasms; since they are all part of one haplotype (and are not independent of one another), having one usually implies having the others as well....
rs10974944(C;G)
Increased odds (2 - 4 fold?) of V617F-associated MPNs
The following SNPs are (all) associated with the JAK2 46/1 haplotype that appears to predispose to V617F-positive neoplasms; since they are all part of one haplotype (and are not independent of one another), having one usually implies having the others as well.
There are some wise folk on here who might be able to understand all the info you have given , But really until you have appointment and maybe more tests it will bprobably be guesswork..
Go to your appointment prepared with questions you have , maybe written.
Meanwhile work on trying to not get to stressed . Note I said ‘work on ‘ not don’t get stressed ! It is stressful not knowing.
Hi I am in UK my platelets went to 590 before the sent me to Haemotology. Confirmed I have ET 2 weeks ago . Put on Hydroxycarbamide tablet & no side effects yet. I take it at night so I sleep hopefully incase any side effects but was fine. I am fit gymn swim sail etc but felt something wrong as getting breathless on walks etc. It’s because the platelets are over producing & thick that Oxygen not absorbed as healthy platelets . I was tearful & shocked when told but once started medication & realised I was ok on it I can cope. Already I am walking better . Covid has put May appointments back but once you start on treatment you will be well looked after . Try & walk each day even short walks help this even if tired I go & feel better for it . Read up on the complaint & you will understand why you have felt I’ll. Great it has been diagnosed. Lots of people would never know . Julia 👍
Hi Cesw l empathise with you l also have random pains and fatigue l don't
understand. l have ET/ PV and platelets at times are all over the place. Three years in lm only just begining to understand what happend to me. Anyway this site is brillent a good source of information and ongoing support at these challenging in our world.
Thank you everyone, I'm looking forward to finally meeting with the Hematologist next week and sorting everything out. I didn't start getting really tired until last year. I think the explanation by Exeter21 makes sense. All of my other bloodwork looked okay but I have been pretty concerned because lately it doesn't take much to tire me out! I went to a tradeshow for work and we walked a lot. I got to the point where I had to just go to the hotel afterwards, my legs were hurting, I was out of breath and just done and that's not the normal for me. Guessing everyone is different but at some point as the platelets rise it must make it harder to get the oxygen you need. I keep telling myself that I'll get to the doctor and they are going to laugh at me and tell me it's nothing. But reading the stories of people who had an extended time of raised platelets before they were able to receive treatment makes me thankful that I'm getting it checked out sooner rather than later.
Your PLT is rising consistently if slowly, so it is a pattern so far. Mine went from ~350 to 1000 over 7 years.
On the Jak2, there are threads here discussing very low Jak2 alleles, well below 1% for example. Such people don't necessarily develop MPN but as I recall are more likely to then someone with absolutely zero. You may want to inquire about some of the tests that look for the lowest alleles, not every test looks that deep.
Hello and welcome to the forum. You have found the right place to be.
The symptoms you report are consistent with a MPN. If the platelets are the only blood cells elevated, then the likely diagnosis would be Essential Thrombocythemia. That assumes there is not a cause for secondary thrombocytosis. It is important to note that there are three driver mutations that can cause ET (JAK2 v617f/JAK2 Exon 12, CALR, MPL). There are also people with ET who are triple-negative (Et with no known driver mutation).
Please know that I am not saying you have ET. I would have no way to know that. Also know that MPNs are rare disorders. Most hematologists do not have the KSAs to provide optimal MPN care. That is why it is so important to consult a MPN Specialist. Here are two lists.
The fact that you have a family history of blood cancers is relevant. The issue of familial MPNs is well established. The link to histories of lymphomas and leukemias is under investigation. The finding in the 23andMe test is a reference to the JAK2 haplotype. This is thought to be a genetic predisposition to acquiring the JAK2 mutation. I am also positive for this finding as is my daughter. We are both positive for the JAK2v617f mutation.
I was diagnosed with ET about 30 years ago. It progressed to Polycythemia Vera about 8 years ago. At age 66 I have lived a rich lide and continue to do so. You will see that the MPNs are considered to be blood "cancers"; however, these conditions are chronic disorders. They are long-term management problems. It is a convention that you are more likely to die with ET than from it. Know that if you do have ET or another MPN, you will have plenty of time to figure out how to manage it.
There is a lot of excellent information available to you once you know what to look for. Please stay in touch and let us know how things turn out ponce you meet with the hematologist. The next step will be to check for all of the driver mutations and to rule out potential causes of secondary thrombocytosis. Once you have some answers, you will know what information to look for.
Well, I went to the hematologist and my platelets had went down a bit and she said it was nothing to be concerned about at this point since they are still relatively low. Then she said she just wanted to see me once a year.I left the place feeling like I must have been wrong for even going and felt like really she thought I was crazy.
When I received my insurance EOB I see that she put my diagnosis down at ET instead of just some sort of reactive thrombocytosis so really I’m kind of confused. I doubt she would put that down unless she felt that was the issue. I don’t know. I’ll just keep an eye on it I guess 🤷🏻♀️
That is a bit too little information to be sure what is going on. Did the doc check for the three driver mutations (JAK2, CALR, MPL)? Was a BMB discussed? How did the doctor diagnose ET? Based on what information?
Here are the WHO Diagnostic criteria for ET.
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).
What did the doc say about the constitutional symptoms you reported? Fatigue is the most common of the MPN constitutional symptoms. It is not caused by anything to do with your blood's ability to conduct oxygen. Fatigue is caused by deregulation of the JAK-STAT pathway. The other thing to understand is that at the core MPNs are inflammatory disorders. We are subject to a host of secondary symptoms due to systemic inflammation. Managing a MPN is about much more than just the blood cell numbers. There is more to ET than the risk of thrombosis.
At age 46, it is the norm to not begin any cytoreductive medicine unless you fall into a high-risk group. Aspirin and monitor is the most common approach. However, it is important to provide treatment for the secondary/constitutional symptoms you experience. Treating MPNs is about quality of life, not just reducing risk of clots. What you are experiencing is quite common with MPNs. It is not just in your head and your are most certainly not crazy.
Suggest you arrange to see a MPN Specialist who is better equipped to review your diagnosis with you and provide an appropriate care plan.
Sorry I’m just now seeing this! She based it off of 5 years of platelets that continue to elevate and sent me to meet with a genetic counselor to discuss further bloodwork. I have that meeting next week. She said we could do a BMB but since my platelets were still relatively low she didn’t want to put me through that. The genetic testing will probably give me way more answers. I felt like she was pretty flippant in general towards me and now I feel embarrassed even though it wasn’t me that asked to go there, I was referred by my primary who was concerned about a documented slow increase in platelets for 5 years straight with no other health conditions that would cause it.
The genetic counselor may know little to nothing about MPNs. These are very rare disorders. That is why it is so important to consult with a MPN Specialist. Many GPs do not know this and may refer to a regular hematologist, which is an OK place to start. Any doctor can order the tests providing they know what to order.
The most basic starting place will be a CBC, CMP, EPO, prothrombin times. In addition, there is the genetic testing that can be done either with blood work or during a BMB. The most basic genetic test is a qualitative JAK2, CALR, MPL check. If these are positive, then a quantitative driver test can be done to determine the mutant allele burden (variant allele frequency). There is also more sophisticated genetic testing that includes all of the driver mutations and a range of non-driver mutations. This sort of test is usually not done until confirmation of a driver mutation. files.labcorp.com/labcorp-d...
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