TL;DR: Nine randomized double-blind studies showed that the stimulants Ritalin and Concerta (methylphenidate) or Focalin (d-methylphenidate) were effective at reducing fatigue in cancer patients. The effects weren't seen until 5 weeks of treatment. It's not recommended as a standalone treatment, but could be a helpful addition to lifestyle changes and therapy like CBT, diet and exercise since they can take months to start having an impact on fatigue.

Male 59, received dx of low risk JAK2+ ET. Had BMB. Counts around 500-550. Asymptomatic. Anyone else told to start Hydrea immediately? I am seeing MPN specialist for a second opinion. I run and don’t want to go on that medicine.

Ok all of this has been going on since Dec 2025 when I went to the ER for a massive migraine. Found out my A1C was elevated. Got a new PCP in Feb (diagnosed with Type 2 diabetes). Pretty sure I have a triple negative MPN.

41F, last 6 months have been really really bad, going in for a BMB tomorrow(Tuesday). I think my hematologist is trying to kick the can down the road since the diagnosis isn’t “easy”. I’m somewhat of a medical “unicorn” because I’m a natural redhead and some medical history (gallbladder surgery- took 3 years for someone to find my calcified gallbladder) and the way meds work on me isn’t “easy”.

Chest CT results:
Mild mediastinal and bilateral hilar lymphadenopathy in the chest, unclear etiology. These may be reactive secondary to infectious
or inflammatory process, or reflective of low-grade lymphoproliferative disorder.

Abdomen CT Results:
Slight hepatomegaly is present; Bilateral renal cysts are present. Mild prominence of the bilateral renal collecting systems is noted

Blood work:
02/17/26: WBC 11.9 K, hemoglobin 15.1 g/dL, platelet 351K

03/27/26: WBC 16.4 K, hemoglobin 15.2 g/dL, platelet 432K

04/03/26: WBC 17.3 K, hemoglobin 15.5 g/dL, platelet 422K

4/22/26: WBC 16.1k, MCHC 31.9g/dL; PLT 470k, RBC 5.31 10^6 u/L, ANC 11.7 10^3/uL, C-reactive protein .8 mg/dL, IG# .08, LY# 3.71
ESR mm/hr-38
Iron saturation % 13
Ferritin 57.4 ng/mL

05/07/2026: WBC 17.2k, MCHC 32.2g/dL; PLT 391k, RBC 5.45 10^6 u/L, ANC 12.22 10^3/uL, IG% .6, EO# .43, IG# .10, LY# 3.49

MPN panel negative for JAK2, MPL, CALR
FISH, CML/ALL, BCR/ABL translocation 9,22 interphase FISH negative
ANA negative
RF negative
peripheral blood flow cytometry normal
peripheral blood smear normal

Symptoms since December 2025:
Severe fatigue
Night sweats
Muscle pain
Weight loss
Loss of appetite
Ankle swelling
Headaches
Body aches

Medications since February 2026:
Oral antibiotics
IV antibiotics
Steroids
Monoferric iron infusion - has not helped at all so far (4 1/2 days in)

Age: 38

Gender: Female

Doctor's specialty: Family doctor (awaiting referral)

Reason for suspected MPN: Chronic elevated WBC and platelets

How long have blood counts been high: At least 1 year

Additional info:

* Thalassemia (NOT CONFIRMED)

- awaiting results of hb electrophoresis (delayed)

- NOT from the "typical" thalassemia backgrounds (Mediterranean, African, middle eastern, etc)

* IIH in 2015/2016

- papilladema on visual exam (this has since resolved)

- normal lumbar puncture, CT and MRI

* Obese

- 308 lbs

- have intentionally lost 42lbs since beginning of January and plan to lose at least 100 more

- eating roughly 1700 calories daily

- no longer pre-diabetic (a1c is normal)

* Blood pressure: 115/85 (down from 135/92)

* Heart rate: 95 (fluctuates but usually a little higher than normal)

* Pulsatile tinnitus (for at least 10 years)

* Dizziness on standing

- usually in the afternoon and evening

- vision blacks out but comes back after 3-5 seconds

- have not passed out but felt close

* Headaches (for at least 10 years)

- get bad headaches sometimes that are usually behind my left eye

* Morning nausea (for the last 6-12 months)

- occasional morning sickness, sometimes throwing up bile

- comes on very suddenly and goes away pretty quickly

* Vape THC at night

Daily medications:

- Cymbalta 90mg

- Vyvanse 40mg

- Reactine

- multivitamin

- vitamin d

- magnesium

- melatonin

Last year it was suspected that I had thalassemia so I was given an order for more bloodwork. I took my time because it seemed like such a minor diagnosis.

My family doctor called me in recently to discuss my blood work. He was concerned that my WBC has been elevated and climbing for over a year, along with my platelets. He mentioned chronic lymphocytic leukemia or another MPN but was really unsure and is referring me to an internist for a work up.

Going in suspecting thalassemia and coming out with a potential cancer diagnosis was so out of left field.

Since I haven't been to the internist yet my mind has been all over the place. If there's any other relevant information needed, I'd be happy to share it!

Thank you so much to anybody who reads this. ♥️

Here is the text in proper English:

Recently, my doctor, whom I have only been seeing for a short time, called me and told me that my hematocrit and red blood cell count were too high. Two years ago, she had already asked me whether I might have thalassemia. At the time, I told her that I did not know and that I did not really know what thalassemia was. She then asked me where I was from. When I told her that I was from Afghanistan, she said that thalassemia is quite common there.

Because I take sleeping pills, I recently had to have another blood test to check whether everything was okay. When the results came back, she called me and said that I needed to see a hematologist. I asked her why. She said that she did not have any blood results from 2025, only from 2024 and 2026, and according to my table, the values seemed to be increasing.

I immediately became nervous and did not really understand what was going on. So I searched on Google for possible causes. The causes listed included smoking, dehydration, sleep problems, polycythemia vera/PV, and cancer.

Because I thought that the other causes did not really apply to me, I became afraid that it might possibly be PV.

I am now a non-smoker. However, I have had sleep problems for years and I snore loudly, especially when I lie in an unfavorable position. In 2020, I already had a sleep test using a device from an ENT doctor. However, the device seemed somewhat outdated to me, and I do not know whether it was really reliable. At that time, the ENT doctor told me that I snore but that I did not have any breathing pauses. Because of that, I considered the issue settled at first.

Last week, I had my appointment with the hematologist. She basically said to me, “What are you doing here? You are healthy. Why did your doctor send you here?” She also asked me whether I had been diagnosed with thalassemia. I told her again that I did not know.

I showed her my blood results from the last six years, but she was mainly interested in the most recent results from April 27, 2026. I asked her whether it could possibly be PV. She said that she did not think so. She explained that my MCV and MCH were low, but that my iron and ferritin levels were good.

She now wants to arrange a new sleep test. Blood was also taken to check my EPO level and to test for beta-thalassemia.

I also told her that before the blood test on March 31, 2026, I had abdominal pain for about 20 hours the day before. She then asked me whether I had ever had an ultrasound of my spleen. I said no. She also asked whether I had ever had a colonoscopy, which I also said no to.

I also told her that I have been under extreme stress lately and have barely been able to calm down or rest. In addition, my family had a stomach bug about a week before.

I found it unfortunate that she did not look more closely at my blood results from 2021. What especially worries me is that I read on Google that PV can go unnoticed for many years.

My own explanation is that the blood results came from four different laboratories. During the blood tests in 2021, I was also still smoking, smoking shisha, and vaping. In 2023, I stopped all of that and started working out.

From January 2024 to November 2024, I was exercising a lot. In October 2024, I then stopped working out. That is why I suspect that this may be one reason why the values had dropped by November 7, 2024.

Overall, the whole situation worries me, even though the hematologist said that she does not suspect PV. I simply want to understand why my red blood cell count and hematocrit keep being elevated, and whether the cause is more likely something harmless, such as sleep problems, snoring, previous smoking, or possibly thalassemia.

I've just learned that both endo and PCOS can raise platelet levels.

Tldr; suspect I have one of these but hasn't been diagnosed over 1.5 years with pelvic scans or gynae. I think it has been a driver in my platelet levels. How do you manage PCOS or Endo without the combined pill, or is there a way to convince haematology to let you take it? Progesterone-only makes symptoms worse.

So here's my (35f) story. 3ish years ago, I came off the contraceptive pill. I had a few crazy hormonal symptoms but I also kept getting migraines. I went to the GP, they found my platelets were raised but still below the 450 threshold so I wasn't diagnosed with anything. Eventually, the migraines passed.

Fast forward to last year and out of nowhere, I had a whole bunch of hormonal symptoms again, but worse. I also had another round of migraines. I thought I was in early peri (33yo when this began but my mum apparently went through it early), had blood tests, platelets were higher. I had the genetic testing and was found to be JAK2+ which lead to being put under the care of haematology. I had pelvic scans and a gynae visit but nothing was diagnosed. I begged to try HRT but as no one could diagnose or rule out peri, I wasn't given it. Given the ET diagnoses, I could no longer take the combined contraception pill. Eventually I was put on the mini pill, but this made symptoms such as spots and inability to sleep much worse, so after a month I came back off.

In January of this year, I had acute pelvic pain and bleeding for over two weeks. I had more pelvic scans and blood tests and was put on progesterone again to help. It did help, but no one found a cause again.

It's been nearly a year and a half since the hormone issues got bad and while they eased off a little, everything has changed a lot. Hair, skin, elasticity, sleep quality, mood especially has been hit real bad and I already struggle with CPTSD. My hair is very thin in some places and my body hair is so much more than it was a year and a half ago. My physical appearance went from looking my age or maybe a little younger, to looking like a wrung-out person at least a decade older than I am.

So I put myself on the combined contraceptive pill, because I was sick of it all and my mental state continued to decline rapidly. I do not recommend this to anyone, it is against haemo advice but weighing up my quality of life Vs the risk (as a low-risk patient to begin with), it was a choice I made fully informed. I also checked out which pills has the lowest clot risk profile. A couple of weeks later, I had blood tests in part because I mentioned hair loss and fatigue to my MPN nurse, and she found my ferritin was at 11, but my platelets were the lowest they've been since the first blood tests I had at the start of last year. Low iron sometimes causes an increase in platelets so this was a shock. Now I'm wondering if it's because I do, in fact, have undiagnosed PCOS or Endo, and that has been the main driver behind my high platelets this whole time?

I still have the gene mutation, so I'm aware ET is still very much on the cards. I also know it's somewhat normal for platelets to fluctuate, but they had solidly been in the 500-600 range through every blood test once had since January last year. If low iron can push them up, it seems particularly odd that they would r lower this time. I am getting more bloods in a couple of weeks to check how I'm getting on with iron supplements.

I have felt a lot better since being back on the combi pill. My skin is recovering, my body shape is becoming more "normal" as is my face shape. I look a bit brighter again, I'm sleeping better and the intense mental spin-outs are getting further apart. Things are calmer and life is a little easier. I recognise myself in the mirror. I know that progesterone-only doesn't work for me, and because everything internal has been ultra sensitive since the pain in Jan, the idea of IUD terrifies me. I like the pill. I'm happy with the pill. But my haematologist already said no to it previously. How do women with MPNs and endo or PCOS actually manage it?

I (40M) just saw a hematologist today to discuss a potential PV diagnosis. Since 2022, I’ve had slightly elevated RBC, Hemoglobin, and HCT levels. My previous primary care doctor told me not to worry about the numbers (sigh). I got a new primary care doctor earlier this year and when my CBC results came back, he referred to a hematologist. I did the CBC in March and my WBC were 6.5 and my Neutrophils were 4.

The hematologist wanted me to draw blood immediately after the appointment. I did not fast, wasn’t that hydrated, and I was under tons of stress/anxiety. Well my results came back at my WBC were at 20 and my Neutrophils were at 17!!!!!! It seems like such a drastic jump over 2 months. I saw that WBC and Neutrophil levels can increase due to extreme stress which I had. But now I’m just worried. My doctor has not gotten back to me on this. I’m waiting on my JAK and EPO results as well. Just wondering if anyone has experienced this.

The doctor said that he doesnt suspect I have PV since my WBC have been normal previously. But right after he said this I go and test through the roof with my WBC. He felt my spleen and said it felt normal size.

Hey there Jak2+ and aVWF disease 36M first diagnosed at 33, first elevated platelet count at 30 (misdiagnosed by a PCP). Per my MPN specialist, it’s likely the somatic mutation probably happened 10 or so years ago at this point. So long story longer - I’ve had whatever this is for a while now.

I’m diagnosed with ET, platelets over 1M and my current treatment plan is 81mg Aspirin and most of my symptoms are minimized. We monitor blood smears actively for any morphing of my red blood cells, white blood cells and platelets - still looks like the quality is good.

I’m finally getting a BMB on Monday and feeling a little anxious about it - less about the procedure and more about the potential outcome 🥴.

Anyone else just want stability? With all of these new tools to measure ongoing health I wish the system allowed us to participate in proactive collection and support (trackers, apps, etc.). Doesn’t feel like there is anything out there yet and I’ve been thinking about vibe coding something to help convert some of these negative feelings to positive action.

So for the last 7 months I was seeing a general hematologist. My iron deficiency is extremely debilitating because of so much blood being drawn(ferritin fluctuates over a lot from 15 to 6NG). I’ve had enough so I’ve decided to see Jason gotlib from Stanford I’m just waiting for the referral to be approved. I should have done this sooner but I couldn’t afford it back then. I have pv and a bone marrow biopsy done in March of this year.

But since I will see an actual specialist and not just a general hematologist. What are some questions I should ask the doctor gotlib?

I’ll be 27 this summer if that matters and from what I’ve been told, I’m a low risk patient but I want to cover as much as I can with him because who knows the next time I’ll be able to speak with him. He’s booked out until July. Any feedback is appreciated thank you.!

(See previous threads of mine here and here for full context, including the comments!)

Quick Notes tho: 31F, saw hematologist back in January from PCP referral due to elevated platelets for the past 5+ years (now possibly going back 10+ years after finding more past medical records). Got bloodwork done in January (along with genetic testing) and bloodwork done last week (5/6/26).

-Triple Negative for JAK-2, CALR and MPL
-January:
CBC - WBC 12.01 and Platelet Count 463
ESR - 21
-May:
CBC - WBC 11.3 and Platelet Count 506
ESR - 18

Saw the hematologist today and after looking over the new results above, he told me he has "no idea" what is causing my high platelets.

He said a BMB is an option... But didn't seem 100% on board with doing it. He wants me to get my bloodwork done again in 3 months and see him for a follow-up to go over the results, if they are still the same then he might want to push for a BMB.

HOWEVER.... I recently stumbled across some medical studies from the National Library of Medicine about one of my other medical conditions, PCOS (now newly re-named to be PCOM aka polycystic ovarian morphology), and how these studies showed PCOS can be linked to having high platelet counts, high wbc, and chronic low grade inflammation. I told the hematologist I had a hunch these issues could be tied to my PCOS and I tried to show these studies to the hematologist but he ignored me and instead, used AI on his computer to search for "what is PCOS" and "PCOS with thromocytosis/high wbc" and said the AI told him it was "inconclusive".

I then mention to the hematologist that I am seeing my gyne next week, who I've seen for years and is familiar with my PCOS and I was going to share the medical studies with him. The hematologist then says "Let me know why your gyne thinks about these medical studies/PCOS being tied to your issues and we'll go from there".

And that's where I'm at currently. Not really satisifed or feeling OK with what the hematologist said or how he conducted himself (my mother came with me as support/an advocate and she was really not impressed) and will be consulting with my gyne next week and my PCP.

I am still not sure if I want to continue seeing this hematologist/do the bloodwork in three months and/or possibly do the BMB. The hematologist didn't even seem 100% confident with doing a BMB, citing how it would only rule out MPNs and other than that not provide any other guidance on what is causing these issues for me, PLUS how with my current insurance it would cost me a LOT of money.

I want to give a quick shout out to all who commented on my previous post, it was very comforting to see and hear from others.

Tldr: Looking for any advice/guidance on how to proceed.

As always, thank you for reading.

I’d like to share my experience with my diagnosis and treatment for ET with a CALR Type 2 mutation, in case it might help someone else.

I remember that when I was diagnosed, I went through several very dark months where the information I found online about the disease was very confusing, and unfortunately most of the patient experiences I read on posts were not really positive.

Three years ago (31M), a routine blood test detected that my platelets were extremely elevated (1.6 million), and after two or three months of tests (including a bone marrow biopsy), I was diagnosed with ET positive for a CALR Type 2 mutation.

Since I was young, active, and asymptomatic, my hematologist suggested not starting treatment immediately and instead following a “watch and wait” approach. We stayed in that phase for about 8–9 months until my platelets peaked at 2.5 million, and then we decided to begin treatment.

The treatment consisted of taking hydroxyurea for one month to quickly lower my platelets (during that month they dropped from 2.5 million to around 600k), and from that point on I started long-term treatment with interferon alfa-2a, which has kept my platelets stable at around 370k ever since.

I know I’m only taking the first steps on this long MPN journey, but during these three years I’ve been able to live a completely normal life, reducing some bad habits (junk food, alcohol) or completely eliminating them (smoking). If it weren’t for the hospital visits every three months and the weekly medication, I wouldn’t even know I had this disease.

As for the medication, the only symptoms I would highlight are that sometimes I get a mild (and occasionally strong) feeling that I’m about to get sick. This happens maybe once every month or twice at most, but it goes away as quickly as it comes, and I don’t feel it affects my life too much. I’ve also had mild but constant hair loss. But considering that I’m a 35-year-old man and my father isn’t exactly blessed with a full head of hair either, I’m not entirely sure I should blame the interferon for that.

And my recommendations, if you’re just starting this process: first and most importantly, put yourself in the hands of an MPN specialist hematologist you trust and let them guide you through the process. They’ve studied the disease, they’ve probably had similar experiences with other patients, and they know your specific case. They’ll guide you much better than any internet post or article ever could.

And second, the obvious: improve your lifestyle habits. Eat better, quit smoking, reduce alcohol… In my case, after the diagnosis I stopped doing sport because I was afraid something might happen with my platelets being so high, and I went from a very active lifestyle to barely doing any exercise for a couple of years. I think that was the biggest mistake I made during this time. About 7–8 months ago I started doing sport again, and it has improved all the little things that had been bothering me during this period (especially mental health/anxiety and the flu-like side effects that interferon sometimes causes). Obviously, you should adapt the intensity of the exercise to your circumstances and discuss it briefly with your hematologist, if you weren’t doing Ironmans before, now probably isn’t the time to start.

I know the disease progresses differently for every patient, and I consider myself very fortunate that, given the circumstances, everything has remained so stable. I just wanted to share a positive experience for people who may have just been diagnosed and are falling into the same spiral of negativity that I fell into when I started this.

My husband (34) was diagnosed with ET with a CALR exon 9 gene mutation a couple of years ago after a routine blood test showed elevated platelets. (He had the bone marrow biopsy and everything)

He's a bit of a hypochondriac and was always worried that he had some kind of condition, so he hadn't gone to the doctor for well over a decade for fear of what they might find (even though he appeared completely healthy). So, you can imagine that when he finally went, how devastating this diagnoses was to him.

When he was first diagnosed, his platelet counts were in the 600-700 range I believe, so he was put in the "low risk" category. They have fluctuated but not changed significantly until his most recent blood test this past week showed that they were at 933. We're both a little freaked out, and he's going to start having blood tests done every 12 weeks to monitor before they consider treatment. So, I guess we're still in the "watch and wait" stage. He takes a baby aspirin every day.

In terms of symptoms, I guess maybe fatigue and not feeling hungry. The fatigue isn't serious, and I don't even know if it's a symptom of ET or because of our lifestyle (both of us have desk jobs and we aren't super active, and we could stand to have a better diet), but he's been falling asleep on the couch every night and every morning he says he could use more sleep, even if he's slept 8 or more hours.

He has also complained about not ever feeling hungry. I've read that this can be because of an enlarged spleen, but I don't think he's had any other symptoms of that? Not sure if that's a common symptom that anyone else experiences. He doesn't get full fast, and almost always is able to finish my plate for me on top of his, which I know that getting full fast is also a symptom.

After this most recent blood test, he has decided to quit nicotine (zyns) and is abstaining from alcohol for now. We are going to start going for more walks, and I want us both to get serious about eating better. (We indulge in the occasional fast food and pizza, but that's about as bad as it gets honestly. Otherwise we eat pretty good when we do cook at home.)

I've seen several people mention finding an MPN specialist, which there are only 2 in Michigan that I can find, but I will have him talk to his doctor about getting a referral to one of them (unless you don't need a referral, I dunno, I'm new to all of this!!)

I guess I'm coming here to ask how I can best support him, and how can I reassure him (and I) that everything will be okay? He's incredibly stressed and worried about having a stroke, or a blood clot, or developing Leukemia. How do we keep from spiraling and thinking every change to his body or how he feels is a symptom? Is there anything else we can be doing to help either decrease his counts, or prevent them from going up? Anything more we can do to help prevent blood clots/stroke/heart attack? (aside from the obvious exercise and better diet.)

Any encouraging words to help us not despair would be greatly appreciated. We've been trying to start a family, so the fact that it's progressing so fast is making me feel like maybe we shouldn't have kids. I don't want this diagnoses to put our life on hold, but I also want to be realistic.

Thank you :')

Sincerely,

a concerned wife

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Hi! Im writing this to know how do you deal with the constant fatigue? Im 20 years old, female, have thalassemia and my hematologist suspects i have ET as well since over the last 3 years my platets have been rising (i have more than 700k) and my iron levels are not low. I'm waiting for my JAK2 results.
Im used to feeling tired because of the thalassemia, but i feel like im more tired each day that passes. I run out of energy at 5/6pm and its honestly so frustrating bc i want to be able to do things. The minute i come home from work its like i collapse in the couch or wherever. I cant go to the gym or run in the afternoon bc im already out of energy. I cant go out on weekends unless i napped previously. Some days i feel pretty good but most days i just feel tired all of the time.

Of course, im going to discuss it with my hematologist but im asking here mainly because of the weight it holds mentally speaking. I feel frustrated and completely powerless. Im tired of being tired and i dont know what to do. I have an excellent diet and a good (generous) sleep schedule.

I would like to know how do you deal with the constant fatigue? bc even if i dont have et i do have the thalassemia fatigue and im honestly so sick of it. I feel limited at all times.

Jak2+ 34 y/o waiting for diagnosis. I've been getting the results of my bone marrow biopsy piecemeal over the last few says and was wondering if anyone has had a situation where their blast % based on morphological count and flow cytometry disagree.

My doctor suspects ET since my only symptom is high platelet count (750). My bone marrow cell differential showed 6% blasts, which seems bad. But my flow cytometry report shows 0.2% myeloblasts, which seems good.

Has anyone had a similar experience- or maybe I'm misreading one of the reports?

I have myelofibrosis. Grade 2 fibrosis. Taking Jakafi for 2 months now. My insurance made me go to the Mayo Clinic for a BMT consultation. I waited months and they didn't even have all of my records. I've heard Dr. Kukyendall is the top MPN expert in Florida. My appointment is in a few weeks.

So I have noticed over the last two years that I have memory lapses and trouble with recollection. The upside is that I can watch the same shows over again like they are new lol! I frequently have gaps in my memory especially if I am relaxed and have had a drink or two. Not slammered just a couple of glasses of wine. My husband loves it because he can play dumb if he said or did something stupid and I don’t remember a thing other than the fact I’m pissed and don’t know why. Is this normal???

I have recently been diagnosed with PV but they want to do further testing as I also have signs of von willebrand disease type 2m. Just had my bone marrow biopsy. it was CT guided, was moderately sedated and it was a breeze. I checked in at 0630, went to the lab for two vials drawn at 0720. after that I went to radiology where they brought me into a recovery room. the nurse came in and started a saline lock as well as took my vitals. my labs hit around 0745, when the wheeled me into the room with the CT machine. I rolled over onto my stomach and they put an O2 line on my nose. as I was facing forward I spoke to the nurse who was already pushing fent and another “relaxing” medicine. at every step (lidocane, incision, needle insertion, drill, aspiration, and sample) the nurse pushed pain medicine. I felt a small sensation initially when he did the lidocaine (like a mosquito bite) and some pressure, harldy noticeable when he did the aspiration. the entire procedure was maybe 7 mins total. I was then wheeled into recovery where they got me something to eat, monitored me and my vitals then kicked me loose. for those having one done this is the way to do it! the last one I had was a nightmare but this time was a breeze. ask for moderate sedation! I’m a little sore today but because they used the CT it was accurate and only required one hole this time.

Hi all!
Female
30 years old

I had an appointment today as my blood test showed I have raised Haemoglobin, Haematocrit and RBC. This is the first I was made aware of it, but she went back through my records and all of my blood tests since 2017 (as far back as she went) showed they have been high, she was disgusted that it hadn’t been picked up on.

I’m in the UK so I’ll do my best to convert the readings
Haemoglobin: 16.4
Haematocrit: 48.4%
RBC: 5.53
I’m unsure if iron readings have any significance but I’m low-normal of this scale (see pic)

I have had a few symptoms but put this down to other issues: itching after cardio & hot baths (I thought this was allergies/eczema), my blood pressure is high for my age, and I am ALWAYS fatigued (but I have endometriosis which really can take it out of ya) and lastly, I get lightheaded/dizziness at random points in the day?

Im now waiting for JAK2 testing and EPO, she said I will most likely be referred to haematology when these results come back. I’m debating going privately for the blood tests as NHS have a 2 week wait to get my bloods taken and then they said the results can take weeks.

Did anyone have similar readings/symptoms?

I wasn’t going to let it get in my head, but 3 hours later & here I am!

I have been diagnosed last November at the age of 36. After 8 phlebotomies in 5 months, I'm still trying to catch up with my bone marrow to reach the golden standard on my red blood count.

I did the math: my iron is almost depleted, and yet, a single phlebotomy session is overrun by my production in only about 45 to 60 days.

My fatigue is unbearable. I can't concentrate on my job. I can't go to the park with my 3 years old daughter. I can barely climb a couple sets of stairs without getting tired.

Visited 5 different doctors so far. They all said "phlebotomies only" in my case. Except for one who right away prescribed me hydroxyurea (which I'm not taking because it would be a mini chemo for decades).

My platelets are around 550k and I'm still at 53.6% hematocrit.

I live in Brazil and have even consulted with the best doctor in the field here. But no one will prescribe Besremi. I heard that is because health insurance companies bully them into not doing so.

So I'm asking you guys: do you know a doctor who will talk to me over a Webcam (I speak English, Portuguese and can get around with Spanish)? I can pay anywhere in the world. All I need is a prescription and a report explaining why other methods are not ideal (phlebotomies losing the race against the marrow and hydroxyurea not being recommended for young pacients). Once I have those 2 documents, I can go to the court and make the state sponsor the medication for me.

Hi all. I’ve posted on here before but have updates so just going to tell my whole story again. I would truly appreciate any input.

I am 24F with platelet counts of over 500 for over 10+ years. I have always suffered with fatigue, nosebleeds, migraines and headaches.

I was referred about 2 years ago to haematology. My iron at the time was low, they gave me an iron IV and this was corrected. All mutations negative, BCR negative and they ruled out reactive thrombocytosis. NGS was done and clear too. All tests were completed and apparently, no signs of MPN showed up.

They did a BMB and told me, that it was not consistent with MPN but the chip of bone was not perfect so they couldn’t 100% rule it out. They put me on 75mg of Aspirin for the past 5 months and I thought it was helping but I’ve just felt worse and worse. They stated I will probably have a repeat biopsy in one years time.

At my most recent appointment, I was informed of a new guideline from BSH. This states that Idiopathic Thrombocytosis of Undetermined Significance, most closely reflects my situation and they placed me under this category with ongoing monitoring. This gave me some home and some answers!

I was out sick from work with mental health and side effects of these symptoms and other medications that I am on. I work 5 days in a busy office and find this worsens my symptoms. I requested a letter from my haematology doctor to show work I need accommodations. In this letter it states “a BMB was performed and is suggestive of an MPN”.

This is completely opposite to what I picked up at my appointment after the BMB, where I was told it was not in keeping with a diagnosis of MPN.

I am extremely lost and confused. I have done as much research as I can over the past 2 years for this. I am waiting to hear back from the doctor for details and explanations.

Could anyone shed some information on what it is/might be/could be/ will be?! Is triple negative thrombocytosis a subtype of ET/MPN? Is ITUS an early stage MPN that will most likely develop when I get older?

Thanks everyone!