Confusing results: Hi everyone, Before testing i... - MPN Voice

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Confusing results

Vigiindia
Vigiindia

Hi everyone,

Before testing i have HB 20.7(17)

PCV-57(52)

RBC-5.85(5.5)

Platelates and WBC normal

Now i have all test results in my hand

jack2v617f-NEGATIVE

jack2exon 12-NEGATIVE

EPO(normal range 4-29)-7

Bone marrow Biopsy -normocelluler with some increased in megakaryocytes and Erthroid cell,myloid cell normal

BCR-ABL-Negative

My hematologists said that i have secondary polycythemia bcs of smoke,drink,and chewing tobacco habits every day

is that secondary polycythemia or PV?

If secondary can it go away after quitting all habits?

Am so confused!!

7 Replies
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Mazcd
MazcdAdministrator

Hi Vigiindia, you need to speak to your haematologist about this. Maz

Vigiindia
Vigiindia
in reply to Mazcd

Thanks Maz for ur quick reply

Yes i had a discussion with my hematologist regarding this and he is confident that after quitting all habits secondary polycythemia will go way after 1 or 2 years

Hey Vigiiindia,

Hope you are doing well and managed to quit smoking if not work out a plan to gradually quit.

I have secondary polycythemia as well

And your blood counts look like what mine was.

I have however decreased my smoking but still have not quit.

Your blood counts will go back to normal within a week if it is secondary polycythemia.

I had quit cold turkey for a week and saw my hgb go from 19 to 16 without anything this was during my first visit. To the hema, i was trying to see if i could get normal counts then he would say its cause of smoking we need not do these tests. But he still made me do it to clear any doubts and while i was waiting for the test results i was very tensed and got back to it and levels went back up.

Try to maintain good hydration, if i go on fasting for my test in the morning with no liquids consumed the levels are on higher side but when i go around evening for the test the levels are lower, but if i spend most of the day outdoors due to my work smoke very few and do a test in the evening its just above the border.

Whenever I go for my phlebotomy i keep regretting my choice to smoke my first cig 15 years back, if i did not i wouldnt have needed to go through all this.

Alcohol causes dehydration, best avoid it.

When i was in college my max hgb levels were 17-18, i used to smoke that time as well but be outdoors most of the day. After college i would be working in closed airconditioned rooms and when i would get out i would sweat alot.

My levels then reached a maximum of 20.6 the highest i ever had.

Once i moved to a job involving me being outdoors on the field and drinking more water and less sodas and coffee my levels were mostly 17.5-18.7 but would spike up whenever i failed to hydrated or stayed indoors working on edits and smoking.

Hope you do well and get back in shape.

Please quit smoking in whichever way you feel right for you and limit alcohol and maintain good hydration as well as breathing exercises.

Vigiindia
Vigiindia
in reply to Niggy91

Thanks Niggy91

How many years you have it?

Yes your exams and results exactly same as mine.if i looked back i had it before six years and never cause any issues.my HB always on higher side from six years.

Also i have notice from old CBC results that i actually starts smoking and drinking exactly six years ago and be it causing polycythemia.

Now currently My HB again rise up after 2phlebotomy s since 9months.

After initially quits smoking and drinking blood recovers very well and RBC up and down little bit.

Do you need phlebotomy for SP??

Have you on any meds?

Also My MCH and MCH are on always higher side which is not present with PV!

Niggy91
Niggy91
in reply to Vigiindia

Only my hgb rbc and hct are on higher side and sometimes lymphocytes, hematologist said thats cause of smoking.

No medicines for me and my hematologist told me to try not going to other doctors as they will try giving medicines that you do not need or make you do repeat tests.

In the same hospital my dad had seen another hematologist for his high eosionophils, the doctor made him do bone marrow biopsy twice. And further more tests totalling about 150,000 INR only to then give him a tablet for deworming worth 15 bucks and his levels were fine.

My dad is an ex-smoker he would smoke 2 packs a day his hgb and rbc is on the higher side around 18.

I do phlebotomies whenver hct goes above 55 and maintain around 50 doctors advice was bringing it too low may cause issues. Once based on my family doctors request i did try and get it to 48 with phlebotomy and stared feeling dizzy and weak.

Another thing is some of the labs have errors in reporting.

I would go to one lab SRL always and recently after two phlebotomies the level did not drop so i did a blood test at apollo hospital not only is their normal range different the level was lower.

Their reference range for hgb is 13-18

Hct 45-54%

Rbc 4.5-6.5

On trying to research on this i found that most places and doctors consider that normal. But anyway its on individual diagnosis and what the doctor says.

Incase you have doubt you are free to walk into another hematologist.

I believe you are in India too?

We are lucky that we can see any doctor we wish anytime withour waiting and do blood tests on our own and see a doctor quick.

Do try more path labs for the cbc test if you feel your reports maybe misleading.

Niggy91
Niggy91
in reply to Vigiindia

For me I had no reports besides one in 2 years to check with.

In 2009 i had done a random blood count they reference range was 13-18 and my level was 17.5 rbc was slightly higher around 6.6 and which ever doctor i visited like gastro or derma would look at the report and say i was a smoker.

Even the lab in my area used to keep a reference range of 18 later they made it 17 and hct 40-50% and rbc 4.5-5.5

My levels are fine in colder climates summers it does go up.

I only did 3-4 phlebotomies 2014-2015 then all fine then recently since april it was near 20

Niggy91
Niggy91
in reply to Vigiindia

Also my hematologist had made me do a mthfr mutation and homocystiene test.

Found that i am a compound heterozygous mutation for mthfr gene and my homocystiene levels were high.

Was put on Homocheck capsules and levels went normal.

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