Haematocrit for those with PV

[Foss33]

Hi,

I am due to go for my next check up at the hospital tomorrow and wondered what levels others had their HCT maintained at?

I am female, in my 30's and my PV is managed by Venesection and Aspirin at the moment, my haem aims to keep my HCT at 45, but I thought it should be lower for female.

I have gone 6 weeks since my last visit to the hospital and usually it is only 4, for the last week I have been really tired, it will be interesting to see whay my hct is tomorrow and if it is that that is causing the fatigue.

I would appreciate any feedback, it would be also interesting to know do any of you guys keep a note of your blood results and track your symptoms? does this help? I have never been bold enough to ask for copies of my results to take away but it makes sense to monitor myself how I am feeling.

Thanks all

Andrea

[Aime]

Hi Andrea, Mine is maintained at 45 or below. I was told by haematologist and clinic nurse and GP that I might feel better higher or lower - everyone is different. I know higher won't work for me but would like to try it lower. Maz sent me information on fatigue and blood levels. It is worth a read because there is not necessarily a connection between blood levels and fatigue for everyone. I have tried to make sense of my fatigue and other symptoms in relation to blood counts but have not succeeded. Hope this helps,

[LouisePRV Volunteer]

Dear Andrea, like Aime my haematocrit tends to hover around the 45 mark.

Have a feeling it might be slightly higher at the moment, but I feel fine. I take hydroxicarbamide and have a couple of venesections a year.

I'm writing an article at the moment for the American branch of mpd voice ( mpn voice) about diet and fatigue.

I have found that since controlling my diet with an iron rod my fatigue has almost disappeared.

I quite understand that this may not work for everyone, and indeed is extremely hard to stick to - you also need to check out nutrition with a naturopath or nutritionist to make sure it's ok- but for me it's worth it.

You may like to have a look at the mpn newsletter - should be findable on google.

Hopefully my article might be printed in next month's newsletter.

Best wishes

Louise

[PVPVPV]

Mine is 0.45 (male, 60). If it gets above, I have a venesection, which happens about every 3 months. I think I'm right in saying that your consultant/nurse automatically writes to your GP reviewing your case and listing your blood counts AND should ask you whether you want a copy to be sent to you as well. In this way, you can keep a record. But you could ask for a print out as well.Sometimes it's useful to see a graph or table. It's only a few seconds for them to do this. Perhaps I'm lucky in having a very pleasant and efficient team taking care of me - I can ring up and ask to speak to a named individual if I have any concerns, though I've never done that. I wouldnt worry about asking for a print out, just do it (as they say these days) and also ask about the female/male issue.

As for fatigue, there could be many reasons. Nearly every MPD patient seems to have this problem, judging by the online discussion lists, but I don't as yet have this problem. This may be physiological or may be down to life-style / nutrition / mental state / general health. Do you have an exercise programme or outdoor activities or have you tried? Good luck.

[jane13]

Hi Andrea,

I ask for key blood results from the haematologist each visit and write them down at the time: HCT, platelets, white and red levels.

BW

Jane

[harleydavidson]

Hi Andrea

I have always been venesected when HCT goes above 45, I am a 46 year old female, diagnosed 8 years ago. I have a monthly blood test and phone the day unit the following day and write down every level, HB to basophils. This is because I like to keep a check on what's going on for my own peace of mind. Always ask for what you want, they are your blood results. Take care. Melanie

[geordie]

Hi I have been diagnosed with PV for over a year now after having a number of minor strokes. My HCT is maintained at 42 or below. I have 4 weekly blood tests and venesected when required. Fatigue is a consent problem with me along with hot seats both have no relationship with the level of my HCT.

[KevinJH]

My haem gave me a pre-printed sheet local to our area for those specifically using Hydroxy to keep a record of the 'main' areas of concern. On checking, my last three hct readings have been .45 but this time around - last week - it dropped to .44 which he was happy with. And if he's happy, then so am I Notwithstanding that, I've kept my own record from day one of these particular results anyway and the haem's have all been quite happy to tell me what they are/were so I could jot them down.

[jogging1]

Hi I was diagnosed with PV March 2012 after having a stroke. My PV is now controlled by Hydroxycarbamide x 2 500mg daily. For the last eight months I have not needed venesections .Hydroxycaramide is working fine for me. Went to see my haemaologist yesterday and my haematocrit is 36. When I was first admitted last March it was 54. My consultant always give me a print out of my blood results. By thre way I am female age 47.

[Foss33]

Thanks everyone you have all given me some interesting feedback here.

I went along to the hospital yesterday and my hct was.42 so no venesection needed. Perhaps I should look into diet and excercise more. I am finding it difficult at the moment being back at work full time and with 2 young children the last thing I want to do with my evenings is excercise but perhaps need to make time if it will make me feel better.

I did ask for my results, the doctor turned his screen around to let me jot them down but I must say I really got the impression I was inconveniencing him. I upset him even more when I asked him to sign my form to request free prescriptions, he was horrified.

I have mentioned in prevoius posts I don't feel I get to strike up any kind of relationship with the doctors at my hospital and I never see the same one twice, I have since yesterdays appointment asked for that consistency and they are happy for me to request a specific doctor when I go.

Thanks again for all of your help

Andrea

[KevinJH in reply to Foss33]

Good for you Andrea - it's your (our everyone else's who's in the same boat here) right to receive free prescriptions and if he was horrified, well - he ought to be careful not to get too stressed out as he might end up in the boat with us. And as for inconveniencing him - tough banana's. There's been a lot of talk recently on the radio and in the press about medico's being more sympathetic to people's conditions - specifically cancer related ones - so maybe he should take note. I'm sure they're in the minority going by some of the feedback we see here but it's just your luck you've pulled a short straw there. Stick to your guns Andrea and get the treatment and attention that you deserve

p.s. great hct result btw.....

God bless

[Foss33]

Thanks Kevin.

I appreciate your kind words and I too am glad I stood my ground , I surprised myself. Just wish it didn't have to be like that.

His opening line when I asked him to sign it was "There are lots of patients in this hospital having intense treatment who aren't entitled to free prescriptins, I don't see why I should" Now I am a very placid person and never complain or stand up for myself even when I should but I immediatley saw red and just asked for the form back and told him to forget it. I reminded him that it was his colleague that had advised me to bring it along with me as my maternity exemption certificate is about to expire. He the reluctantly signed it and siad "I guess you come under this section" and ticked the 'C' word box.

Hey ho - that is all behind me now, I won't be seeing him again like you said great news about my hct, perhaps things are settling down now that I am a year down the line and my body is getting back to normal after pregnancy.

Take care

Andrea

[Sheryljean]

Hi! I am in the US and I am scheduled to have my labs done every two weeks and then I see my hematologist a week after. Since she put me on JAKAFI, twice a day, my numbers are dropping. I am now at 42.1,which was down from 43.6 from before. With luck, she said that I’d I can maintain these numbers for a mo th, then she will let me try taking the meds once a day. I have not had any phlebotomies since January, just hydration infusions, which help tremendously

Good luck and keep us posted on your numbers!❤️