feel at my best when haematocrit is between 39 and 42

[Loubprv]

Hello all

I feel at my best when my haematocrit is between 38/39 and 42.

I have a bit of difficulty getting my haematologist to understand this - he says as long as it’s around 45/46 it’s ok.

would be most interested to hear your views please

Louise

[saltmarsh]

I can only tell you what my experience is and with my hematocrit running between 42 and 44 I don't have issues similar to yours. My issue seems to be that I occasionally need some extra iron - I can feel the difference when I add it in small doses. My doctor is ok with that as he recognizes every patient is different. So my suggestion is that you do some research to see if you can find an answer for yourself. You know what you're feeling. It's up to the doctor to recognize that. Good luck.

[sycamoreone]

I feel exactly the same as you! 39 to 42 is perfect for me. Any higher and the migraines become a problem... Lived with PV now for 21 years and I know what level is best for me. Regards, Susan 😊

[Loubprv Volunteer in reply to sycamoreone]

Thanks Susan. I think we know our own bodies best!

[Bobadog]

Hi,

I agree with you.When my haematicrit peaked at .45/46,I felt quite unwell,with fatigue,severe lethargy etc.My energy levels improved drastically .40-42.I think everyone’s haematology is extremely variable and your ‘comfortable’ levels should be respected by your haematologist.

I am now taking Ruxolitinib which has stabilised the h/c to .39/40

All the very best,

Bobbie

[hunter5582]

You know your own body best. The best doctors listen to their patients and believe them. Many MPN Specialists use 42% as the target for female PV patients. This is based on the differences in female physiology.

There is more to treating PV than reducing risk of thrombosis. Improving quality of life is equally important. If you find that keeping HCT < 42% improves your quality of life, then 42% is the appropriate goal. This is your prerogative to determine.

Your MPN care provider should consider your experience with managing PV in setting treatment goals along with consideration of the often used goal in the MPN treatment community of 42% for females. If your provider is unwilling to do this then it is time to select a new provider. We all need providers who will work with us to achieve our treatment goals.

Wishing you success moving forward.

[Loubprv Volunteer in reply to hunter5582]

Thanks Hunter. In actual fact my haematologist is one of the best in the country ( a Prof of mpn) and I do in fact trust his judgement - but not on this point. Think I’ll have to have strong words!! Louise

[T1960 in reply to hunter5582]

Such good advice Hunter. I completely agree. I am going to talk to my specialist on Wednesday. I have been unwell and off work for the last 3 weeks due to high hematocrit and feeling........! This has happened a few times now. My question to you is how do I convince my specialist that I feel rotten. Headache's ugh!!! And other stuff. Thanks for all your advice on this forum. X

[hunter5582 in reply to T1960]

Good doctors listen to their patients and believe them. You have to be clear and direct about your observations regarding how you feel, what you experience, and what you have observed regarding correlation with HCT. Setting a target at 42% for a female is very reasonable and common with many MPN-expert providers, though not all. If that is what you think the target should be based on your experience lining with PV, then that is what the target should be.

There should be no need to convince a provider that you are experiencing symptoms when you are in fact experiencing them. Some people find it helpful to keep a symptom log. There are apps that do this as well. this helps to provide and accurate picture regarding what is going on.

Assertive patients receive higher quality care, Passive patients do not. Suggest that this is a time to be assertive.

[T1960 in reply to hunter5582]

Thank you for your advice and support. I shall be assertive tomorrow and explain my difficulties. As always Hunter you provide sound advice X hope you are keeping well.

[BloodyMPNS]

Hi Lou, I’m the same as you and insist on a venesection over 42 as headaches set in above that number. My consultant doesn’t seem to think that my headaches are anything to do with my counts as he says they’re good but I do believe we know our own bodies best and refuse to wait until I hit 45. Good luck to you. Mel x

[Loubprv Volunteer in reply to BloodyMPNS]

Thanks Mel x

[rubyrubyruby]

my target is 0.45 and they won’t do anything under this. I’m not sure how much of not feeling great is down to hormones, being anaemic or my HCT levels

[Cityreach]

Hi Loubprv

I am similar too, the lower HCT the better I feel and less itching I am under Guys and have a target of below 43 this has been the case for the last year now so if over 43 I have venesection, I had no issues with Guys agreeing this target to trial and just stuck with it

I hope you manage to get it sorted out ask for a new trial target

[Loubprv Volunteer in reply to Cityreach]

Thanks that’s useful to know Louise

[Exeter21]

yes 39 seems my best healthy spot but not much lower but hard to stay on it 👌

[ainslie]

it’s a common problem, some haems like to stick to rule book but some are flexible, the lower the Hct the lower the risk so it makes sense to lower it to where you feel best within reason, 38 is quite common for female, mine as a male is best around 40

[Loubprv Volunteer in reply to ainslie]

Thanks Ainslie x

[mark382]

I feel at my best at 43. Fortunately my haematologist goes with how I feel, subject to not making me too anaemic. I know they keep you below 45, but if I feel rubbish and I'm at 44 they'll do a venesection. PV for 16 years on Aspirin and venesection.

[Loubprv Volunteer in reply to mark382]

Thanks so much. I m hoarding the evidence!

[falconered53]

I have had your exact experience. After years of noticing that I felt better when hematocrit was around 42, I kept being told that as long as it was below 45 I was good. I kept insisting and doc finally agreed to change the target. Then I had to argue for more frequent phlebotomies to get the number low enough to maintain in the 42 or below target between phlebotomies. You must insist. Point out that most experts now make 42 the target for women, who have a lower blood volume than men. Research and bring evidence with you. Or ask for a second opinion, especially with an MPN specialist. These last two years since my doctor authorized the target to be 42 or lower, I have felt so much better. Good I’m luck to you. Be insistent - it’s your quality of life at stake.

[Loubprv Volunteer in reply to falconered53]

Excellent thanks so much. My haematologist is a prof of mpns and actually brilliant but I can see I shall have to have strong words! Louise

[T1960 in reply to falconered53]

Great advice. Will do this on Wednesday 👍 x have felt rotten recently

[Hollyhedge]

Hi, my first haematologist said he would like to keep me at 40 or just under. Other people managing my care along the way, have argued that 45 is the level I should be at. I then have to refer them to the first set of notes stating this, and asking to get a venesection or two, to get me down to that or just under. I agree wholeheartedly with you. I feel much better when at this lower level. My current haematologist works with me and is happy to go along with my wishes so happy days. Hope you can get this sorted.Best wishes

Catrin

[Loubprv Volunteer in reply to Hollyhedge]

Thanks so much Catrin! I m storing up the arguments Louise xx

[Innessant]

I have had PV for 10 years and normally try to keep the HCT levels at 40-50. Recently, despite being fit I noticed it started to creep up to 63. A few headaches came back. So I am now trying with more phlebotomies and 1000mg HU per day to get it back to 45. My point is that I dont know why it should creep up.And in my case my body seems to tolerate pretty well (M,67). I am a bit surpised how some people micromanage their bloods to an extreme degree. On a positive note I am feeling very well and defeated diabetes by diet and exercise recently.