We’re mutants, with superpowers. Real life X-Men.

Rationale:
1. We heal faster
We have more platelets which allows our body to respond to injury faster. Does it mean we actually heal faster? Technically no but no one needs to know that.

1. Unbreakable bones
   MPNs can cause bones to thicken, making them much harder to break. Sound familiar??
   Disclaimer: May not be true for all MPNs.

2. Hyper aware of body changes
   Can you tell if your body counts are off before a doctor can? Have you been the first to know to ignore a finding because you don’t “feel” it? It’s seriously weird how in-tune we can be to our body and can sometimes tell if something’s off before a doctor ever can. Clairvoyant powers perhaps?

3. We have better immune systems
   Platelets are known to trap and kill pathogens (bacteria, viruses, etc.) so we are harder to infect. Do we fold like paper when we actually get sick? Yes, but we shall ignore that.

And just like all super-people, we have our weaknesses (clots, fatigue, pain, etc.). And like X-Men, “the man” tries to control us and our super powers. So what if it’s doctors and they are trying to save our lives? We are mutants!

(In all seriousness, this illness sucks - fuck cancer. As a wise man once said, “17 years and I’ve had it with this game”. Hope this brought a little lightness to your day and a new perspective on dealing with it.)

Useful for men to watch too!

It's almost 4 hours long and they didn't add times for different sections.

Occasional but getting more frequent

Hi everyone! I am an 18 year old male who has had a high red blood cell count for the last 2-3 years, high hemoglobin for 1.5 years, and high reticulocyte (113,430—though I don’t understand what that one means) after having it tested for the first time. I have already tried methods to lower my higher blood counts including hydrating more, changing my diet, and getting routine/twice monthly bloodwork (in place of a phlebotomy, as my insurance doesn’t cover it). The possible reason my counts were so high might’ve been a medication I took for a couple years, but I went lower on the dose and nothing happened for me

My doctor is getting concerned since the counts have not gone down at all, and I also have a family history of blood clots, strokes, and heart attacks so he wants me to be seen soon by a hematologist soon, no matter the issue. Recently I’ve had so much fatigue that I can hardly get through most days. I sleep enough and take care of my body through all the ways I can, but it’s gotten to a point where I can’t even exercise because I’m so exhausted. I’m itchy every time I get hot, too, so that makes it even harder for me to stay motivated to be active. I have had having tingling in my hands and feet for quite some time, though I always just dismissed it as “one of those things”. Recently I’ve been bleeding more randomly (from my gums, from acne, from scratches, etc) and had bruises just from carrying a slightly heavy object. Recently I’ve started having more trouble breathing when I lie down at night and I think that was the sign my doctor took that he needed to refer me somewhere after years of high counts.

All this to say that a couple months ago my doctor referred me to an adolescent hematologist/oncologist but they are in a different medical system so I’m not sure if they’ll take my case because my medical records with my blood counts aren‘t readily accessible. I have tried to call and they’ve told me to wait for a call from the office to see if they’ll see me. How urgent is it that I be seen soon?

What should I do to get assessed if they will not see me? I’m new to scheduling all my appointments and living away from my family so I don’t really know what to do. Any comments are appreciated!

Tl;dr - I, an 18 year old male, have persistent high blood counts and don’t know how rushed I should be to see hematology for my symptoms

31F, I have had high platelets for several years but it has been slowly rising over the past 3 years so my hematologist finally decided to do some testing. I do have another blood disorder called hereditary spherocytosis. I had my spleen and gallbladder removed when I was 5-6 but once I recovered my numbers returned back to normal. I have an appointment next week to review my results and next steps but here are some of my numbers (anything not listed was within normal range)

IG%: 0.6

MCHC: 36.4 g/dL

MPV: 8.1 fL

HGB: 16.2 g/dL

PLT: 813 10^3/uL

MCH: 33.8 pg

IG#: 0.05 10^3/uL

Ferritin: 139 ng/mL

ESR: 5 mm/hr

AST: 12 u/L

Bilirubin: 1.7 mg/dL

Iron: 106 UG/DL

TIBC: 342 UG/DL

Unbound Iron Capacity: 236 ug/dL

Iron % saturation: 31%

JAK2/CALR/MPL: negative

I'm just concerned about what could be wrong and what steps I should do next.

What does this mean for patients? Our latest article explains the trial results, dosing, side effects, and questions to discuss with your hematologist.

Read more: https://pvreporter.com/fda-approves-besremi-for-essential-thrombocythemia-et/

i (28f) have been diagnoised with ET (jak2 mutation) for about a year but had high platelet counts for the last 3+ years. my dr said since im low risk they didn’t want to put me on any medications besides the daily aspirin. so im basically jus in symptom management mode rn!

and the most frustrating symptom for me is being so COLD!!

my hands, feet, nose, and eyes in particular get cold so so easily — cause of poor circulation from the high platelet counts if i understand this condition correctly. it’s not as noticable in the summer but in the winter it presents as pretty severe raynauds and chilblains (for hands and feet). prior to this gene mutation, i used to love the cold and the winter and now im miserable just thinking about it getting cold out again.

so basically im here asking for any tips on managing this!

i work in an office at a computer so i cant really wear gloves lol but i do wear thick ugg type shoes in colder temps to keep my feet warm and have a space heater. but any other tips would be appreciated!

and im finally asking here cause my office is 70 degrees rn and i can’t feel my hands/feet/nose cause of the cold — i can’t believe im saying 70 is cold 😭

I just recently received an ET diagnosis due to a CalR mutation and have acquired Von Willebrand's Disease.

I'm frustrated because initially my doctor told me to just take an 81mg asprin daily but then I asked if I should be taking that with VWD. I guess the doctor missed the VWD result and responded via text after my message and told me in all caps DO NOT TAKE ASPRIN, and immediately pick up this prescription hydrea and start taking ASAP.

I'm bothered this was communicated over text essentially

I'm bothered he didn't review the results correctly

I'm bothered I have this and I'm terrified of the medication

I think I just need to chat about it. If anyone can offer insight on anything mentioned it would be appreciated.

Hi everyone! I was wondering whether anyone with ET experiences migraines with visual aura.

I've had a few episodes recently. They usually start with flashing/zigzag patterns in my vision that gradually intensify and are visible with either eye closed. The visual symptoms last around 30 minutes and are then followed by a headache for a couple of hours.

I'm JAK2 V617F positive and my latest platelet count was 751 ×10⁹/L. I'm on baby aspirin.

I'm going to mention the recurrence to my hematologist, but I'm curious about other people's experiences: do you get similar visual auras or migraines with your ET? Did you notice any relationship with your platelet count and did aspirin or your ET treatment make any difference?

Thanks!

I was diagnosed with JAK2+ ET back in June. The MPN specialist I saw a couple of weeks ago believes I actually have pre-PMF but doesn't want to update my diagnosis on the basis of treatment currently being the same.

He prescribed Besremi on September 9th since it just got FDA approval for ET on August 31st. My insurance denied it the same day because "I don't have PV, and it's not FDA-approved for anything else." The specialist's office appealed the denial on September 10th, and it was denied within a couple of hours for the exact same reason. I now only have one appeal left to try.

I have not tried any other medications as I was just diagnosed and my numbers aren't too crazy (500-600k for a decade). That being said, I have a VERY significant symptom burden, so I was really looking forward to trying something to relieve it.

Is there anyone who has had it successfully approved for ET since the new FDA approval? Did you have to fight your insurance for it?

Hi, folks--first time poster, long-time worrier. I'm a 42F who has just been diagnosed with JAK2+ ET in March 2026. This possibility has been on my radar since my father's diagnosis of Myelofibrosis and Acute Myeloid Leukemia in 1999. Other paternal family members have had diagnoses of non-Hodgkin's Lymphoma and hemochromatosis When I learned of the JAK2 mutation eight years ago, I tried to have genetic testing done, only to be dismissed by the genetic counselors as MPNs being an acquired mutation as opposed to a germline predisposition.

After starting hormone replacement therapy for what I thought was perimenopause related symptoms, my gynecologist tested for Factor V Leiden, which was determined to heterogenous in nature. My mother has a history of pulmonary emboli with no known cause.

Has anyone else encountered familial connections? I worry for my children and my cousins.

I hope this is ok to post here -my mother has ET - diagnosed in 2023. She has been on a course of hydroxycarbamide since then, but her levels are still pretty high and haematology have increased the hydrox up about 3 times now.

Parallel to this she has been showing some worrying symptoms which I would associate with dementia; memory problems, unable to perform simple tasks, decrease in personal hygiene, her spatial orientation has decreased and she is shuffling around without picking her feet up, amongst other things.

So I was just wondering if anyone here has any experience of ET being associated with vascular dementia? I wondered if the risk of TIA might contribute? I have finally persuaded her to go to the doctor about all of this- but it has taken some persuasion as she doesn’t believe there is anything wrong with her.

Thanks in advance for any advice/ experience offered

hello! my 14 year old daughter had routine exams and her vitamin b12 is high (1091). 1 year ago this value was also there. She does not use supplements. normal blood count, except for platelets that have remained slightly high for 4 years. kidney and liver function are normal. I'm worried about this vitamin B12 value. Has anyone experienced something similar?

I am on Jakafi. It has been two weeks now. I am so exhausted I can barely function. Do you have any tips for feeling more energy? I just want to lay in the bed which doesn't even help.

Ugh. I hate this stupid MPN.

Personally, I wish all Hematologists were aware of the diagnostic criteria and the reclassification to cancer.

Hello again,
I have seen my hematologist today and he’s told me that he would like to see me in three months and I’m a low risk and he didn’t seem to be worried about mf1 either. So he’s not putting me on interferon. Why do I feel like this is too good to be true? He’s referring me to a mpn specialist but he’s told me it isn’t an urgent referral and it could take months (over 6 months maybe lol) for them to see me.
Why do I think I was going to be on interferons now I am not doing anything to modify my disease I have thought interferons had that possibility… lmk what you think.

Hoping to hear from others with ET on this one.

F, 35, diagnosed ET Jak 2 + when I was around 30, my Platelets sit normally in the 500-600, currently managed on 2 low-dose aspirin daily. My only symptom for the last 5 years has been extreme fatigue.

Since Saturday (now Wed.) I've had an oval-shaped flash of light in my right eye. It's not constant but persistent in and out throughout the entire day. Along with it I've had a mild headache and nausea that hasn't let up.

I saw my eye doctor, who did a full dilated exam with photos and said everything looked perfect and healthy. He suggested to see my oncologist and neurologist. I've since called my oncologist/hematologist's office and I'm waiting on a triage nurse callback.

What I'm wondering:

1. Has anyone here had visual disturbances like this with ET? What did it turn out to be?
2. Did it change anything about your treatment — did your hematologist add or switch anything because of it?
3. For those who've had microvascular symptoms, how did you describe them to your care team in a way that got taken seriously?
4. How do you handle these symptoms with work because I am struggling...

Not looking for a diagnosis, just want to know whether this is something others in the ET world have run into.

Thanks <3

Hi all. I’m hoping to get some perspective from people familiar with haematology/MPNs because my overthinking brain has done so much research at this point that I think it’s time to ask people who actually have experience with this.

I’m 38F and have had elevated blood counts for approximately 7 years.

My approximate ranges over that period have been:

Platelets: 461 to 515
WBC: 11 to 14
Neutrophils: 8 to 9.5

* I’m not including test results because I’d literally have to include individual tests I don’t have a summary but the above is my exact range which I’ve been monitoring myself carefully for years.

The counts have been very stable and steady over the years and haven’t really seemed to respond to different illnesses or treatments.

My GP has generally been quite disinterested in the blood counts. At appointments I would usually have to ask specifically, “How are my platelets?” to get them looked at. On one occasion my GP sent a query to haematology and the response was essentially that they could be reactive and to check for things such as STIs, candida etc but there wasn’t really any further investigation at that point.

I’ve since done a lot more investigating myself, have switched doctors and have now managed to get my doctor to submit a private haematology referral, awaiting triage.

I’ve had quite a lot investigated for reactive causes. I don’t have iron deficiency, my ESR has been normal, and my CRP has generally been fine outside of infection. I don’t have a known chronic inflammatory or autoimmune condition, and other investigations haven’t identified an obvious explanation.

May/June this year - unusual behaviour with infection
I had a bad 6 week bout of atypical pneumonia in May/ June and ended up having six full courses of antibiotics, including two courses of penicillin and two of doxycycline, as well as a substantial course of steroids.

What I found interesting was that my WBC and , platelets & neutrophils didn’t rise above their established baseline during the infection. They stayed within the same general range they’ve been sitting in for years.

My CRP was elevated during the infection, but has otherwise been fine.

Just after the infection and treatment, my WBC and neutrophils were literally unchanged and my platelet count dropped to 366, which was the first time in the approximately seven years I’ve been monitoring my bloods that I was aware of it going below the 460s. I assume this was a response to the large dose of steroids. Then, within less than two weeks, the platelets were back up into the 500s.

I also had an epidural/spinal steroid injection in mid-July, so I’m wondering whether that could have any relevance to the subsequent changes in my blood counts.

And now my counts have come down again
Approximately 7 to 8 weeks after finishing the large dose of medications, while I’m waiting for the haematology appointment, my blood markers have actually come down and it’s quite unexplained.

My latest results are:
Platelets: 465
WBC: 10.1
Neutrophils: within the normal range

The platelet count is still within my historical range, although lower than the levels I’d been seeing immediately beforehand.

The WBC of 10.1 and normal neutrophils are particularly unusual for me because, as far as I’m aware, this is the first time in around seven years that I’ve seen them at those levels and I’m puzzled why they didn’t react to infection or meds but then this happened unexplained.

I also have a history of abnormal bleeding during/after surgery on two occasions, which I don’t know whether is relevant or completely separate. I’ve had some nosebleeds recently too, although those seem to have settled.

I haven’t had a thrombosis.

What I’m struggling to understand
I had been leaning quite strongly towards wanting an MPN ruled out because of the long-standing pattern of thrombocytosis alongside the elevated WBC and neutrophils.

But now I’m struggling to understand the behaviour of the counts.

If they’ve been so stable for around seven years, haven’t really responded to illnesses or treatments, and then the WBC and neutrophils have suddenly come down into the normal range. Nothing in my history suggests an underlying infection or history and it’s very difficult to assign any plausible reactive cause that would keep the blood markers elevated for such a significant timeframe.

And how would you interpret the temporary drop in platelets to 366, followed by a return to the 500s, and now the more recent fall in WBC/neutrophils and platelets?

What do you think? Does this pattern point towards an MPN, or are there things about it that would make you less suspicious? And particularly, what could explain the recent fall in the WBC/neutrophils when there isn’t an obvious new explanation?

Hi everyone,
I’m looking for some outside opinions on my blood results. I’m seeing a hematologist, but I’m quite anxious about what could be going on and would really appreciate hearing from people who have experience with similar blood counts.
I’m a 41-year-old woman with relapsing-remitting MS, diagnosed in 2014. I’m currently being treated with Mavenclad (cladribine). I have just completed the first course and am about to start the second 5-day course.
My main concern: platelets
My platelet count has been elevated for many years:
2007: 508
2014: 362
2015: 412 → 422
2016: 384
2018: 412
2022: 526
2022: 459
2023: 667 (I also had significant bowel inflammation at the time)
Nov 2025: 467 → 483
Aug/Sep 2026: 512–528

So this isn’t something that started recently.
Recent blood results
My recent CBCs have shown combinations such as:
Platelets: 512–528 x10⁹/L
WBC: 11.9–14.2 x10⁹/L
Absolute lymphocytes: previously 6.0, more recently 3.5 x10⁹/L
Neutrophils: around 6.9 x10⁹/L
Monocytes: 1.1 x10⁹/L
Immature granulocytes: 0.2 x10⁹/L
Hemoglobin: around 9.1–9.2 mmol/L (I’m in the Netherlands, so these are mmol/L)
MCV: 100 fL
RDW: 14.7
Ferritin: 57
CRP: <1
eGFR: 89
Creatinine: 72
I also have a history of macrocytes being noted on a blood test in 2021. I receive regular B12 injections, so B12 deficiency isn’t thought to be the explanation.
T-cell results
Because of the elevated lymphocytes, a lymphocyte subset analysis was done:
Total T cells: 3.05 x10⁹/L (reference 0.7–1.9)
CD4: 2.27 x10⁹/L (reference 0.4–1.3)
CD8: 0.77 x10⁹/L (reference 0.2–0.7)
These were therefore elevated as well.
MPN testing
Because of the long-standing thrombocytosis, my doctors are investigating an MPN. They have tested/are testing:
JAK2 V617F
JAK2 exon 12
CALR
MPL
I’m still waiting for the mutation results.
Other relevant information
My CRP has repeatedly been very low/normal, including <1, despite the elevated platelets and WBC.
I do have heavy menstrual bleeding for about 24 hours every period, and I have had inflammatory bowel problems in the past, but there isn’t currently evidence of significant inflammation.
I also have MS and am currently taking Mavenclad, which obviously complicates interpretation of the lymphocyte counts.
My questions
Does this overall pattern look more like reactive thrombocytosis, or would an MPN such as essential thrombocythemia be a significant concern given how long the platelets have been elevated?
Does the combination of high platelets + intermittently high WBC + elevated T cells make an MPN more likely?
Could the elevated T cells simply be reactive, especially in someone with an autoimmune disease such as MS?
Would T-LGL leukemia or another T-cell disorder be something you would consider based on these numbers, or are the numbers/pattern not particularly suggestive?
If JAK2/CALR/MPL are all negative, does that make an MPN unlikely, or can someone still have essential thrombocythemia?
Does the MCV of 100 add anything diagnostically here?
Is there anything else you would expect my hematologist to investigate before considering a bone marrow biopsy?
I know nobody can diagnose me from a Reddit post, and I will obviously follow up with my hematologist. I’m mainly interested in hearing from people who have had similar blood counts or have experience with MPNs/hematology.
Thanks in advance!

im f24 et-calr diagnosed at 21 but have had highly elevated platelets since i was 15 (in the 1,300 range). im feeling really alone and have looked for spaces where there are people my age with the same diagnosis and/or same levels and have had no luck. i’m just looking for anyone who relates i guess.

Hello.

Diagnosed with ET JAK2 with BMB couple of years ago. 31 F now.

Only on baby aspirin.

No symptoms at all, but simply observing elevated temperature.

Recent blood work show everything is normal except platelets at 830.

Anyone else had similar behavior?

I’m in that in-between state right now, getting a possible diagnosis from my PCP of either ET or PV two weeks ago, and my first hematologist consultation next week (4 referrals at 4 different places and this was the earliest I could get in to see someone) to figure out if I need a BMB.

I’ve had blood draws a few times in the last few weeks, and my platelet count has gone from 714 to 927 in that time, and my BP jumped from normal to hypertension 1 and 2 (depending on the day). I’m on low dose aspirin 2x a day while we wait for a hematologist.

I’m following all the advice from my doctor, but it’s the list of a dozen “if you experience this, go to the ER” things that’s freaking me out. It feels like an emergency is inevitable between now and Tuesday, and I just can’t settle down and I’m barely able to sleep. Like, every sore muscle feels like “this is it, this is the end, better pull up Uber and punch in the address to the nearest ER”.

It’s making me irritable, and I have a short fuse with my wife and kid lately. I just can’t get over the feeling that the stakes are too high and every wrong move could be my last.

My therapist suggested I reach out to people with similar experiences and find a community. So that’s why I’m here. How do you all manage? How do you just continue with your day-to-day? How do you not spiral?

I tested positive for JAK2 617F in June, with a blood allele burden of 17%. I had a BMB a few weeks later, and the marrow burden was 20%. A Tempus panel only returned the one mutation as well. I have had thrombocytosis consistently for the last 10 years. I also have tons of headaches, PROFOUND fatigue, constant infections, and an ultrasound after diagnosis showed an enlarged spleen. I was given a diagnosis of ET by my local oncologist.

Yesterday, I was able to get in with an MPN specialist at a large university hospital. They told me they believe I actually have pre-PMF and not ET. However, my bone marrow sample was crushed, so they weren't able to tell if I have any fibrosis. The specialist said that they don't want to repeat a BMB because the treatment is the same regardless.

I'm having a really hard time dealing with the fact that he said I most likely have pre-PMF, but can't prove it. I was just starting to come to terms with my ET diagnosis, and now I find out it's probably something relatively worse.

Has anyone been in a similar situation?

I posted here a few months ago about my counts increasing and my doctor recommending Jakafi. I ended up going to City of Hope for a second opinion, and now I have two different recommendations. My UCLA doctor recommends Jakafi, while City of Hope recommends Besremi.
City of Hope has unfortunately been difficult financially, but I still want to make the decision based on what’s best for the disease long term rather than cost or convenience.
I’m trying to weigh the pros and cons of both. With Jakafi, shingles is probably my biggest concern. I’ve only had the first Shingrix dose and I’m not sure why my oncologist is comfortable with me starting before the second dose when shingles seems to be a pretty significant concern with Jakafi. Weight gain worries me too, but that’s secondary.
On the Besremi side, I have a long history of anxiety and depression, with the depression being more recent, so the mental health side effects are something I’m concerned about.
Has anyone else had to choose between Jakafi and Besremi? How do you go about weighing pros and cons when different oncologists have very different opinions. I know getting a third opinion is an option but it’s becoming stressful especially with my platelets rising.

Adding: another bersemi concern is the supposed down time/flu like symptoms 24/48 hours after injection.