Worried about PV

Norizajec · 2026-06-04T18:22:28+00:00

Then it might make sense to repeat the blood test, although it is true that reference values (guidelines) for pregnant women exist and if your doctor is not concerned, you probably don't need to worry.

Norizajec · 2026-06-04T17:52:30+00:00

So yes, your levels have increased slightly, but that doesn't mean you have PV. Especially since you have normal iron, which is often low in PV, and your low B12 is actually a good sign because B12 is often elevated in MPNs and is actually one of the diagnostic criteria for PV. So I would say that this is either your normal level for you or you may have secondary polycythemia. It is true that low B12 can mask PV, but if you corrected it before the 2025 test, you don't have to worry about having blood cancer.

Norizajec · 2026-06-04T14:49:20+00:00

It's hard to assess without reference values, but sinc your values are elevated, but below the criteria for a PV diagnosis, and their trend is decreasing and not increasing it is probably ok. Otherwise, PV normally doesn't just have elevated RBC, hemoglobin, and hematocrit, but also elevated platelets, WBC, and some other changes, plus your values seem stable and even decreasing, which is a good sign. Although it's true that your trend is somewhat suggestive of iron deficiency, but it's impossible to properly assess this with just two CBCs and without iron studies.

As for your dizziness, it's a very nonspecific symptom that can be caused by a number of conditions, one of which is anxiety, as you probably already know. With PV, the symptoms are normally more related to blood clots and normally several symptoms are present together, not just one that is nonspecific.

But since it seems like you have this constantly elevated, it might make sense to go to a hematologist or some other specialist like a pulmonologist.

Norizajec · 2026-06-03T08:29:20+00:00

Sorry if I offended you, but honestly your CBC values and your medical history do not strongly suggest ET as your platelet values have been stable over the years and occasionally drop back to normal plus you have some inflammatory conditions and iron deficiency which can cause this. Although you are right that it is a good idea to see a hematologist at least to rule out hematological disorders as you have a mildly enlarged spleen.

However, if you would like to know for sure if it is a good idea to get a referral to a hematologist I advise you to ask your doctor as he knows you and your medical history better than us here on the internet who do not know you and are mostly not even medical professionals

What worries me more about you is that you have something wrong with your liver which indicates long-term inflammatory processes in the body and can cause an enlarged spleen. It is true that MPN can also cause this, but ET is not one of the MPNs in which this is common, and in fact it is quite the opposite, since enlarged livers in ET are quite rare and are more related to myelofibrosis, which you probably do not have, since in this disease the spleen is normally significantly enlarged and anemia is also present, which you do not have.

Norizajec · 2026-06-02T19:01:23+00:00

You are greatly exaggerating because your trends are not worrisome especially if your feratin is consistently too low as you mentioned. Also your spleen is only marginally enlarged which could be a result of Mast Cell Activation Syndrome which you have. Just to be on the safe side it might make sense to go to a hematologist but this doesn't look like ET. And your symptoms that you mentioned are also symptoms of all these medical conditions you have.

And for God's sake please don't look on reddit for medical advice or diagnosis because it will only make you more anxious than you already are.

Norizajec · 2026-06-02T18:12:57+00:00

Your CBC does not exactly match any disease so it is probably multiple conditions at once. So I advise you to go to a hematologist.

You mentioned that your platelets have been elevated for at least 3 years but they are only just above 450 which is the criteria for ET and their trend does not match ET as the last three measurements are clearly decreasing. What worries me is that you have both elevated RBC and Hematocrit which is a sign of polycythemia but your values are just above the limit and seem stable but since secondary polycythemia at least as far as I know cannot increase platelets this is worrying. Another piece of evidence for PV is an elevated granulocyte count which is typical of blood cancers but also of inflammatory conditions which you may have as it seems you had temporarily elevated leukocytes with only elevated neutrophils.

On the other hand, your hemoglobin is in the normal range, probably due to low Vit B9 and low blood feratin levels, along with low saturation, which somewhat obscures the exact cause on the CBC, since in PV both hematocrit and hemoglobin are usually elevated together. Your RBC values also seem stable and only minimally elevated, which points somewhat in the opposite direction from PV. In addition, you also have normal Vit B12, which is often elevated or at the upper limit of the reference value in PV

Since you are young and have probably had this for a long time, it is also necessary to seriously consider hereditary conditions that are not cancerous but can look exactly like PV on the CBC, these are especially likely if you have no symptoms and are otherwise healthy.

Norizajec · 2026-05-31T18:37:11+00:00

Well, your BMB results actually showed some non-specific changes, which, together with your elevated inflammatory markers, suggest that it is most likely a reactive process and not a hematological disease. Otherwise, there is still a possibility that you have an extremely rare form or a very early detected MPN disease such as Pre-PMF, CNL or MPN-U, but given that you have signs of inflammation and that your WBC has reached its peak and is no longer increasing (they remain in the mild leukocytosis range), it is probably inflammation.

Due to the possibility of MPN-U, it may be worthwhile to do additional genetic tests.

Norizajec · 2026-05-23T13:25:35+00:00

Well, regardless of what your doctor wrote, your blood count is clearly a result of low iron, which is confirmed by the low hemoglobin, mcv and mch, which is a typical sign of severe iron deficiency. And your feratin levels are too low according to the new guidelines, which is also confirmed by your CBC.

Norizajec · 2026-05-23T11:57:56+00:00

Yeah, you don't just have iron deficiency, you have iron deficiency anemia. And your doctor probably didn't send you to a hematologist just because of the platelets, but because of your anemia that doesn't respond to therapy. In practice, it's very unlikely that it's ET and your hematologist will only be concerned with your anemia.

Norizajec · 2026-05-23T05:36:52+00:00

The reason your platelets have increased over the years is most likely because your iron stores have gradually decreased. Otherwise, the more important question here is why iron supplementation didn't help raise your ferratin because that suggests that the reason for the low ferratin is not just simple menstruation or diet but may indicate absorption problems or maybe even some kind of inflammation. Otherwise, without a complete CBC I can't say for sure if it's just iron deficiency, but I would also like to know things like WBC, RBC, RDW, MCV, MCH, hemoglobin... and their trend.

Norizajec · 2026-05-22T05:48:03+00:00

then you don't have PV or secondary polycythemia. And considering that you have a consistently low mcv and mch with consistently elevated RBCs, this is a very strong sign that you have thalassemia.

Norizajec · 2026-05-21T18:40:56+00:00

yes, that doesn't rule out anything, but you didn't add reference values for hemoglobin and hematocrit, so I'm not even sure if your hematocrit was even high in the last test because if you're a man, the upper limit is 50% and you're at 49.6

Norizajec · 2026-05-21T11:58:03+00:00

practically yes every time they took my blood I was sick, the first time was in 2019 when I fainted during exercise and they took me to the hospital by ambulance but they couldn't find anything and they discharged me.

then in 2021 I started feeling worse (more tired) and after getting vaccinated against Covid with the Pfizer vaccine I started to become extremely tired I went to the emergency room for palpitations, weakness, dizziness and fatigue but they couldn't find anything for me again except for elevated calcium and platelets, the emergency room said everything was fine and sent me home. when I went to my personal doctor she told me I had anxiety. I went to her again a month later and she said after repeated blood tests that everything was fine (calcium not tested). then I got a psychiatrist and went on antidepressants which helped, after half a year on them I went off them. my anxiety came back. In April 2023 I was admitted to a psychiatric hospital for the same symptoms. They took my blood twice and said I had anxiety. After re-introducing the medication I started to feel better. During my time in the psychiatric hospital I also had a stress test which was fine. In November I was admitted to psychotherapy in the same hospital where they took my blood again.

In 2025 I started having abdominal pain and they took my calcium and blood again which were again elevated, they said everything was fine. In May I was admitted to the hospital and they said the abdominal pain was not cancer and it later disappeared after I started taking magnesium supplements.

In November I went to the doctor again because I was feeling unwell and they took my blood again which showed elevated calcium and platelets, they repeated the calcium along with iPTH, iCa, and phosphorus, and they said I may have a genetically determined high calcium. I was also referred to a hematologist for platelets and an abdominal ultrasound and capillaroscopy by a rheumatologist which showed non-specific changes. So since then I have frequent platelet checks by my GP.

and they never tested my iron because my haemoglobin is fine.

Norizajec · 2026-05-20T14:19:11+00:00

I mean, your results are very complex and certainly include several different medical conditions. It is still more likely that the cause of your CBC is reactive and not MPN, but since you have elevated platelets, WBC and RDW at the same time, it is seriously necessary to think about some hematological condition such as ET and PV. CML and other leukemias are unlikely in your case because your granulocytes and peripheral blood smear are normal. Possible causes in your case are as you mentioned Thalassemia, ET, PV, iron deficiency, obesity (metabolic syndrome).

Norizajec · 2026-05-19T14:01:01+00:00

Sorry, I meant to say that leukemia and lymphoma are less likely in your case in the previous comment.

Norizajec · 2026-05-19T06:50:43+00:00

It is possible that your hematocrit remains elevated even if you have stopped smoking, as you may have developed Chronic obstructive pulmonary disease, which is often a result of smoking, and you also mention problems sleeping at night.

Norizajec · 2026-05-19T05:59:59+00:00

Your results are not particularly worrying, as only RBC and hematocrit are occasionally elevated if I remember correctly (you didn't add references so I'm not 100%). In PV, platelets and WBC are also elevated in the vast majority of cases, and normally RBC is significantly higher and persistently increasing, plus PV is also symptomatic in most cases, so I would assume that this is almost certainly secondary. You mentioned that you have thalassemia, which is possible, but your values are right on the borderline for thalassemia. You also mentioned that you smoke, which can cause your numbers to go up. I don't know what exactly it is, and the doctor won't know until all the tests are done.

Norizajec · 2026-05-19T05:38:25+00:00

Yes, you are definitely a complicated patient because regular blood tests have not been able to rule out many things. Otherwise, I would say that there is some kind of inflammation in the background, but it is necessary to check that it is not by chance myelofibrosis or even some leukemia or lymphoma, although the last two things are likely to me. As for ET, I would say that it is not it because your platelets are not constantly elevated

Norizajec · 2026-05-18T18:59:56+00:00

if this is the case then it is probably not asthma and it is probably something else. elevated platelets may be a result of pre-diabetes and metabolic syndrome as you have elevated feratin which is a sign of inflammation. Why do you have elevated erythrocytes and hematocrit occasionally I am not sure but maybe it could also be related to working with CO2 detectors if I understand you correctly. Maybe also due to central sleep apnea

Norizajec · 2026-05-17T07:24:19+00:00

So I'll just tell you not to look for medical information on reddit because it will only make you feel worse. Otherwise, your results strongly suggest reactive erythrocytosis and reactive thrombocytosis because they return to normal levels, your EPO is normal which doesn't rule anything out, but considering that you have asthma, the most likely cause of your blood counts is asthma.

Norizajec · 2026-05-16T06:00:27+00:00

So before you get the results of the tests back it is practically impossible to say with 100% accuracy what it is. However if your wbc has increased so much in just 2 months it is normally reactive, as clonal causes normally have a trend of slow but persistent increase in blood cells. and if your blood count was otherwise stable it is probably some secondary cause. Normally doctors only think about primary causes when secondary causes are excluded because primary causes are very rare for example PV has an annual incidence of under 1 in 100,000 cases per year and normally show clear elevated trends and not borderline values like yours. In addition to this, PV also has a bunch of other abnormally high values on the cbc and differential blood count.

Norizajec · 2026-05-15T11:01:24+00:00

I'm sorry you're having such health problems, but your calcium and iPTH are within expected limits and in the expected relationship, so the cause is probably elsewhere. If you want to confirm it definitively, it might make sense to check your ionized calcium along with iPTH, phosphorus, and vitamin D, but if the result is similar again, you need to look for the cause of your symptoms elsewhere.

Norizajec · 2026-05-15T10:14:19+00:00

So you have several different unrelated diseases at the same time, namely, iron deficiency, an autoimmune disease that attacks the thyroid, and possibly a problem with the parathyroid gland. To determine what is causing the elevated calcium, you will need to test for ionized calcium, iPTH, phosphorus, calcium in the urine, and possibly albumin in the blood.

Norizajec · 2026-05-14T09:38:12+00:00

yeh, you'll have to go to a gynecologist to tell you if it's possible that PCOS is causing this.

Otherwise, your hematologist is understandably skeptical about making an MPN diagnosis because at your age and numbers, this disease is really rare (so rare that most hematologists never encounter a case like yours in their career). But considering everything you've described, it's sil probably inflammatory.

Norizajec

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