28F, I am a “truely triple negative” essential thrombocytopenia patient. I am just curious as to what pregnancy looks like for someone with ET?

My Dr stated today stated that before my partner and I even think about having children we are going to have to create a plan. Is this the standard? I’ve honestly never really had anything negative come out of having essential thrombocytopenia. I have ‘had’ it since 2021 and in the last 5 years I have been monitored every three months and been placed on aspirin, to be taken twice a week. It was originally more but I started to bleed internally. I will attach my results for the last year (November missing because it was done overseas). I’m just wondering what did pregnancy look like for you? Were there many changes you had to make?

Movement wise I currently take 10k steps a day and strength train 4 times a week, I am seen as relatively healthy in all other aspects of my life apart from my blood test.

Hi! I feel bad for even being scared about such trivial numbers, but the brain fears what the brain fears.

Blood cell counts are within normal range and what not.

I'm a 27F and we suspect I previously had a clot on my portal vein sometime between 2020 & 2025, as my left lobe is atrophied (and not regrowing) but there is currently no evidence of a clot remaining.

I know that under 1% is so low, but that's still like a 150% increase in 6 months.

My hematologist has made no mention of CHIPs and I think I read I maybe don't count yet because it's so low?

Besides just having general anxiety over this as a concept still, my main question is should my d-dimer be checked regularly?

Otherwise, I dunno. Talk to me oh wise and troubled friends.

Hello all!
I’ve been luring here for a few weeks now in hopes that I would feel the need to post here but, here I am.

36/M

Reason for doctor suspecting MPN: previous unexplained DVT

High Blood Levels: since February 2025, but since have come down to normal as of march 2026

I was hospitalized last February (2025) with a blood clot near my liver. (Categorized as a Deep Vein Thrombosis)
I was out on blood thinners and the hematologist assigned to me was very thorough in her testing and investigation of the why I got a DVT. Ultimately I was negative for everything. I was put on Elequis (blood thinners) and was eventually told that I would have to get a Bone Marrow Biopsy. Which I did. The test results came back inconclusive. The BMB study had said that it wasn’t a particularly good sample to begin with apparently but my bone marrow did not clearly fit a specific diagnosis like PV though the changes in my marrow seem to suggest a type of MPN. They decided to call it NOS (Not Otherwise Specified)
My doctor ultimately recommended that I get a second opinion from a Benign Hematologist.
I eventually found one not too far from me in the medical center of Houston, TX.
I was put on Therapeutic Phlebotomy to get my blood back in normal range. Once my blood was back in normal range she put me on Hydroxyurea. She didn’t really explain as to why we’re not looking for secondary causes. She stated that all my results highly suggest that I have PV so we’re moving forward with that diagnosis and seeing how I react to taking the Hydroxyurea.
Since the phlebotomy my hemoglobin and hematacrit have been on the higher end of normal but still within range. My platelets have not ever been over 300. What am I missing here?!

I was just diagnosed with ET this morning by my hematologist. I have CALR type 1, and haven't had any thrombosis events yet, so she put me at very low risk. I also have fibrosis 1-2 out of 3, and collagen 1 out of 3, but she's not worried about it. I'm 38 F.

I'm sure she's making the right decision, because I don't want to start interferon unless I really need to.

But I do have platelets going around 1200-1400, and I was wondering if anyone has experience with this?

My first von Willebrand test was inconclusive, so I'm redoing it tomorrow, which means I'm also off of aspirin while we wait for that.

Anyway, anyone else with extreme thrombocytosis and no treatment?

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.

I (40m) was recently referred to a hematologist on a PV suspicion. For the last few years, my CBC has yielded elevated RBC, Hemoglobin, and HCT levels. My WBC and platelets have always been in the normal range.

I just received my results of the JAK2 V617f test and it came back negative. My EPO was 6.5.

The hematologist who is also MPN specialist here in Arizona, said that if my JAK2 test came back negative that I very unlikely have PV. He said the next steps would be to get me in for a sleep study and to get a CT scan of my kidneys and liver. But I’m reading my test results and it says if PV is still suspected, to test for the other JAK exon mutations. My doctor said nothing about more JAK testing. Should I advocate for the additional testing? I’m just confused about this whole process.l want to make sure I’m asking the right questions for my follow up appointment. Thank you!!

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.

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)

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?

Hi went from 45 every weeks to 90 every two weeks and now 135 every 3 weeks. 47 (f) had clots in Porto vein, spleen and lungs in November and now diagnosed jak2 positive and Leiden V positive. My numbers platelets are lowish (138)but they say no fibrose. My other numbers are in normal area but the low end. They called it MPN- unclassified but if they would have to choose a diagnose after BMB they say ET. Anyone the same out there - my head thinks MF but doctor says my clots disguise my numbers 🙄 Spleen is 14,5 and they say again probably because of clots and not the MPN itself. Regarding my dose would like to lower it because coughing again and think maybe 135 is to much at once. Would prefer 45 a week again. Can now read it is only for one time use. The hospital gave me new needles and just got me to split up the dose - anyone out there doing the same ?

​

1. Age: 38

2. Gender: Female

3. Type of Doctor You Are Seeing: PCP (primary care)

4. Reason My Doctor Suspects an MPN / what’s going on:

My PCP is sending me for more tests and used ICD-10 D75.1 (Secondary polycythemia). I also noticed “secondary polycythemia” was added to my chart/problem list, but we haven’t discussed it yet. This seems to be a workup for why my hematocrit/hemoglobin/RBC have been intermittently high for years, plus platelets often high or high-normal. No mutation testing or bone marrow biopsy yet. My doc also had her due date Thursday so I'm sure she's busy.

5. Available Test Results + reference ranges (chronological order, this took me a long time to write up):

01/22/2021 (CBC):
WBC 7.4 (3.8–10.8 Thousand/µL).
RBC 5.76 **H** (3.80–5.10 Million/µL).
Hgb 15.7 **H** (11.7–15.5 g/dL).
Hct 48.3 **H** (35.0–45.0%).
Platelets 455 **H** (140–400 Thousand/µL).

04/05/2021 (CBC):
WBC 8.1 (3.8–10.8 Thousand/µL).
RBC 5.27 **H** (3.80–5.10 Million/µL).
Hgb 14.8 (11.7–15.5 g/dL).
Hct 45.2 **H** (35.0–45.0%).
Platelets 464 **H** (140–400 Thousand/µL).

11/12/2021 (CBC + EPO + ferritin) (I ordered these myself):
WBC 8.0 (3.8–10.8 Thousand/µL).
RBC 5.66 **H** (3.80–5.10 Million/µL).
Hgb 15.5 (11.7–15.5 g/dL).
Hct 46.8 **H** (35.0–45.0%).
Platelets 457 **H** (140–400 Thousand/µL).
EPO 3.7 (2.6–18.5 mIU/mL).
Ferritin 72 (16–154 ng/mL).

05/15/2023 (CBC):
WBC 8.2 (3.8–10.8 Thousand/µL).
RBC 5.67 **H** (3.80–5.10 Million/µL).
Hgb 15.6 **H** (11.7–15.5 g/dL).
Hct 47.3 **H** (35.0–45.0%).
Platelets 427 **H** (140–400 Thousand/µL).
(Also had hs-CRP >10 around then; I had a concussion around that time.).

09/25/2023 (CBC):
WBC 8.4 (3.8–10.8 Thousand/µL).
RBC 5.45 **H** (3.80–5.10 Million/µL).
Hgb 15.1 (11.7–15.5 g/dL).
Hct 45.9 **H** (35.0–45.0%).
Platelets 452 **H** (140–400 Thousand/µL).

04/29/2024 (CBC):
WBC 8.1 (3.8–10.8 Thousand/µL).
RBC 5.09 (3.80–5.10 Million/µL).
Hgb 13.7 (11.7–15.5 g/dL).
Hct 42.5 (35.0–45.0%).
Platelets 418 **H** (140–400 Thousand/µL).

11/11/2024 (CBC) — weight ~100 kg / 220 lb:
WBC 6.4 (3.4–10.8 x10E3/µL).
RBC 5.73 **H** (3.77–5.28 x10E6/µL).
Hgb 15.5 (11.1–15.9 g/dL).
Hct 48.8 **H** (34.0–46.6%).
Platelets 408 (150–450 x10E3/µL).
A1c 5.7 **H** (4.8–5.6%) this was enough to add prediabetes on my chart :(.

02/28/2025 (CBC) — weight ~180 lb: WBC 9.0 (3.4–10.8)
RBC 5.23 (3.77–5.28).
Hgb 14.5 (11.1–15.9).
Hct 44.2 (34.0–46.6).
Platelets 428 (150–450)
A1c 5.5 (4.8–5.6) my prediabetes resolved with weight loss

08/06/2025 (Iron/TIBC/Ferritin) I had hair loss from weight loss and we were just checking it wasnt anything else, I weighed around 150-140 I think:
Iron 47 (27–159 µg/dL)
TIBC 272 (250–450 µg/dL)
Iron saturation 17% (15–55%)
Ferritin 239 **H** (15–150 ng/mL)

02/13/2026 (CBC) — weight ~140 lb: WBC 7.6 (3.4–10.8)
RBC 5.66 **H** (3.77–5.28)
Hgb 16.1 **H** (11.1–15.9)
Hct 48.0 **H** (34.0–46.6)
Platelets 464 **H** (150–450)

EPO / mutations / biopsy:

EPO: 3.7 (normal range above)

JAK2/CALR/MPL: not tested yet

Bone marrow biopsy: not done

Tests my PCP has ordered now (ICD-10 D75.1): CBC w/ differential + platelet Fe + TIBC + Ferritin

6. How long counts have been high:

At least since Jan 2021 (4+ years). Hct/Hgb are intermittently high; platelets often elevated.

Other relevant history / possible secondary causes:

I don’t think I have sleep apnea (no snoring); spouse does have OSA.

Well-controlled asthma; lungs sound great. I'm a non-smoker; live near sea level; working CO detectors.

BP tends to be low/normal (e.g., 104/62 today).

IST treated with low-dose beta blocker (metoprolol 6.25 mg/day, tapering down from 12.5 mg/day).

Prior NAFLD on ultrasound (now improved/reversed); I largely quit alcohol to help liver. I do still drink on occassion

Significant weight loss since Nov 2024.

Question: With this pattern (high Hct/Hgb at times + platelets in the 400s for years, normal EPO), does this look more like secondary/relative erythrocytosis + reactive thrombocytosis, or does it warrant MPN testing (JAK2 etc.)?

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.

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.

(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

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.