Stable hb and hct decreased

Hi it's me again......sorry for posting so frequently as this is the only place where I think I can find answers.My hematologist is saying ur hct is not that high and if you are feeling symptoms,go for venesection.I only had 1 unit venesection in may 19 and my hb count is still 16.6 and at that time it was 18.3.hct was never too high.

I did my last cbc on 11th July and that time also my hb was 16.6 and hct 50.how can my hct decrease on its own and hb remain stable without venesection.iam jak2 neg.only my rbc count is climbing and now it is 5.67.Now iam fearing it's something secondary.i had all the possible tests only CT scan and colonoscopy is left.....idk what to do

[Hidden]

And my current hct value is 49....

[mustabshra]

Hi vipulm,

Did u got ur bone marrow biopsy.?

[Hidden in reply to mustabshra]

No di.dr didn't say there was a need.....can't go for it without dr prescription.

[Aime]

Hi, never be sorry for posting - we are all here for one another. I’m no medic so I can only comment from my own experiences. Quite often I’ve wondered at my hct results which have gone up or down without intervention through venesections or any other good reason. I’m not sure if your state of hydration at the time the blood is taken, has a lot to do with the counts .

I wouldn’t immediately jump to the conclusion that your PV is due to secondary reasons until you find out for sure. I was the same, super anxious about the results of the tests and worried myself sick for no good reason and my news was good -all my tests were clear.

Try not to worry, I know it is so difficult not to but you can make yourself ill by being so anxious. Keep posting - we are all here to help.

Kindest regards Aime xx😺😺

[Hidden in reply to Aime]

Aime main thing is getting pv at my age is very very rare .....that's your I'm worried it's something secondary......and I'm losing it now..... totally fed up and frustrated of this thing whatever it is ...

It would have been better if my jak2 came positive....atleast I wud hv known what I have......

[MPort]

Hi Vipulm,

As Aime says we are not medics and can only reply from our own experience. My experience is that there is a recommended no for HCT and HGB for PV that we should aim for. It is different for male and female and may be variable for the individual.

I think from memory the high HCT for females is 44. I don't recall male top figure. But it is close to that so your counts are above that. My cut off is 42 so I have venesections above this no. I have met haematologists on my travels who don't know the PV relationship with higher HCT, thicker blood and possible problems. It is possible your haem is like this. He will refer to the info below in quotes which is for non PV people. If it was me i would consider getting a second opinion.

''The normal range for hemoglobin is: For men, 13.5 to 17.5 grams per deciliter. For women, 12.0 to 15.5 grams per deciliter.Dec 22, 2017''

Your second question is about HGB and HCT relationship. The HCT is how much of your blood is red blood cells. The percentage. So your figure of 50 is 50%. The HGB is more to do with the contents of the red cells. But as a rough guide HGB X 3 equals HCT. As in earlier post dyhydration can change results. And probably other things too.

This is how I understand our PV/HCT/HGB relationship. It is given on the understanding that I am not a professional.

Best of luck in your PV travels.

Mairead

[Hidden in reply to MPort]

Thank you for posting...I'll definitely go for a second opinion.....I have also read that hct target value they set is 45 for men....mine is quite on the higher side....my main worry is that is it secondary polycythemia.....I'll go for a CT scan of brain on Saturday.....so scared....

Dont know if I should go thru colonoscopy as well,my usg of abdomen was normal only

[Aime in reply to Hidden]

Hi, my haem has set my hct to .45, so anything over .44 means a venesection. I still have PV even although I’m jak2 negative. I was told it means I’m positive to a different mutation but the treatment is the same no matter what. You will feel better once you’ve had all your tests and results. In the meantime, you need to find a way to deal with all the stress this causes. Some ways which have helped me are: techniques in moodgym.com, emotions are governed by what you are thinking about- so happier thoughts (eg with me it’s my mischievous grandkids), mean I feel happier, less stressed. If I am feeling really sorry for myself - which I do sometimes, I watch a hospital programme which makes me realise I’m luckier than most.

I also sought help from my GP and ended up on anti anxiety meds which helped tremendously. I hope some of this helps you come to terms with what you have and also you find your way to deal with it.

Kind regards

Aime x😺

[Gloriusezra]

How the sleep study result?

[Hidden in reply to Gloriusezra]

Not helpful....there were some distortion in brain signals.so iam scheduled for another sleep test on 31st aug.dr told even if there is sleep apnea,it's very mild....I also don't think it's sleep apnea as I'm so thin..

[Gloriusezra in reply to Hidden]

Oohh.. Okay.. Dont worry to much.. Keep hydrated and eat healthy..

God bless..

[Dvpk24 in reply to Hidden]

Hi. Have you found out whats going on with you. I am asking since i have a family member in same case.

[kavin2019]

Pl ease inform your status.