Secondary polycythemia

[jamieb977]

Hi Ive just joined, I have quite bad asthma and was reffered to a clinc without did various blood tests and found raised hb and heaomocrit levels and i then saw a heamototolgist who diagnosed secondary polycythemia likely due to smoking for 25 years with asthma.I'm awaiting blood tests to confirm if it's not primary with the gene mutation in bone marrow

I have obviously Googled things and any information anyone can give would be great, it's hard to know if my fatigue tight chest, intolerance to heat is due to that or my asthma.

I am trying to drink more water I probably didn't drink enough before at all and although I'm still smoking I am going to give up very soon.

I've attached a screen shot of my blood levels, is this high enough to cause noticeable symptoms?

Also I've read secondary can be resolved by stopping the thing that caused it I.e smoking would that make a noticeable difference, would the blood levels go back to normal or near normal?

Thanks for any help

[RoundTheWorld]

Hi Jamie. Sorry to read you are having tricky symptoms. I can't see your blood results but the specialist told me that the link between symptoms and blood counts/amount of mutation (if you have it) isn't linear - so I assume patients with similar counts have different experiences.

My understanding (others will be better informed) is that if you have secondary polycythemia removing the cause will resolve symptoms. If you can manage to stop smoking that would help reduce risk of thrombosis (re. counts - HCT level is important for this). Fatigue is definitely caused by polycythemia and I have temp control issues (although other causes could contribute). Breathlessness can be a symptom of MPNs but more likely if you have an enlarged spleen.

Staying hydrated is important, as is getting some mild regular exercise (walking counts).

Good luck with the test results. Wish you all the best.

[jamieb977 in reply to RoundTheWorld]

Thank you round the world,

I assumed the higher the blood levels the more symptomatic you would be, I don't know why the screenshot is blury but the levels are below, when I looked for normal range they wernt much higher

Hb = 181

Neuts = 7.42

Thank you yes they advised me to drink 3 ltrs of water a day, I think I'm managing about 2 right now.

I definitely suffer fatigue but I always assumed it was my asthma, also I remember as far back as 2009 nhs workers commenting on how my blood was thick when having a blood test.

[Luvlyhubby in reply to jamieb977]

My husband was diagnosed with Polycythaemia Vera with Jak2 10mths ago. The day he went to see the Haematologist (who is brilliant) he gave up smoking,tho he still vapes- NON nicotine, which the Haematologist said was okafter 50yrs! Really proud of him, wish he'd done it much sooner, as he has found it quite easy giving up. He's on Hydroxycarbamide 500mg pday (takes it @ bedtime) & hasn't had any side effects (fingers crossed) except some bruising, which after blood tests showed it was due to meds as also on asprin (he was on a hr dose, which was reduced). He has also upped his water intake. Good Luck hope all goes well

[jamieb977 in reply to RoundTheWorld]

Thanks, very informative I have allergic asthma so with pollen high it's a struggle atm with chest and fatigue especially on hot days. I do around 15k steps on weekdays as I work and then do some walking after so try to keep active, I'm slim

[EPguy]

You're right about removing the "primary" cause. 2ndary Polycythemia means it's caused by (secondary to) another condition. High altitude is one example. Smoking is a well known cause to the extent it gets an actual name "Smoker's Polycythemia", example here:

scivisionpub.com/pdfs/smoke...

"Smoking deprives the bone marrow of oxygen that pushes its production of red blood cells (RBCs), the carriers of oxygen."

Do you check your blood Ox levels?

Polycythemia Vera (true) means the "true" cause in directly in the MPN type Polycythemia.

--

EPO is another blood count of interest:

I have the MPN PV, but have an interest in 2ndary because my EPO (erythropoietin ) is well over range, which is not suppose to happen. Low EPO is common in regular PV while high EPO is known with 2ndary PV.

"Secondary polycythemia is caused by some other condition in your body, usually the excess production of the hormone erythropoietin, or EPO"

webmd.com/a-to-z-guides/wha...

This report also has an easy to read list of causes.

You might want to ask your Dr about checking it your EPO. But at the base it does point to the smoking history esp if the Jak2 test is negative.

[jamieb977 in reply to EPguy]

Thanks, the consultant arranged blood tests that I think he's going to discuss with me at next appointment, says on the letter jak2 mutation and mpn sequential analysis

I'll see what he says when I go back and go from there but I will try to remember asking about the EPO

[hunter5582]

Your situation could definitely be secondary PV. The simple process equation is

Asthma + Smoking = Hypoxemia = Erythrocytosis.

Anything that decreases the oxygen supply to the body will cause an increase in erythropoietin which is the trigger for the production of red blood cells. This is normal body function. A more full understanding of your current erythrocyte numbers (HGB) would require also looking at RBC count, Hematocrit, and other values that describe the red blood cells.

The mild elevation in Neutrophils could be triggered by any mild infection. It would only be a concern if it was a consistent pattern that presents over multiple CBCs.

Ruling out Polycythemia Vera is certainly in your best interests. The implications and treatment for PV is quite different than for secondary polycythemia. Your hematologist can do the best job explaining this.

Assuming that this is secondary polycythemia, then I expect you already know that you must stop smoking. Do not wait. Your life may depend upon it. Your quality of life depends on quitting too.

If this is secondary polycythemia than quitting smoking and treating the asthma effectively should return the red blood cell values to normal. Your hematologist can explain this in more detail.

Wishing you success moving forward.

[jamieb977 in reply to hunter5582]

I just looked at a recent blood test on 20th June and rbc and heaomocrit were both in normal range but I can see wbc slightly raised, on screenshot along with hb and neuts

I'm not going to lie I've not had healthy life, smoking drinking etc and giving up completely will likely be the hardest thing I'll ever have to do but it's serious like you say so have to find the willpower to do it

Results

[hunter5582 in reply to jamieb977]

Quitting smoking is not something you have to do on your own. It is not just about willpower. Nicotine addiction can be just as difficult as opioid addiction to deal with. Fortunately, there is medical assistance available. You can find an appropriate treatment plan in consultation with your care team. Some doctors have expertise in addictions medicine., which is helpful in smoking cessation.

Wishing you success moving forward.

[DJK12]

This isn't a scientific reply but by coincidence in an obituary today for the wonderful comedian Bob Newhart it said he was diagnosed with secondary polycythemia in 1985 and that he was a heavy smoker. It also said he stopped smoking shortly afterwards - he lived to 94.

[jamieb977 in reply to DJK12]

94 and living another 40 years later isn't bad going at all, will use that for inspiration. To be honest I've not heard of him

[DJK12 in reply to jamieb977]

Yes I'm showing my age (nowhere near 94 though) regarding Bob Newhart! I hope you get lots of help with giving up smoking. I've never smoked but my husband, also an asthmatic, did and managed to crack it - good luck.