Hematocrit level: Hello everyone ☺ Hi I am in the... - MPN Voice

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Hematocrit level

Mauritiu profile image

Hello everyone ☺

Hi I am in the UK and my haematologist likes my hematocrit at 45, I am female 57, diagnosed in September 2021 no health issues or previous blood clots. Hematocrit was 47 at diagnosis, 7 venesections, took it to 44.3 in November last year. I felt great for about 3 weeks, best I had felt for around a year! Feeling not good again, fatigued, headaches, nauseous, whooshing in my head 😔sweating,platelets have gone from 600 to 800 over this time.

Hematocrit at 44.8 just now, blood tests every 2 weeks just now.

I was wondering if anyone's haematologist gauges a venesection on current symptoms, rather than recommend Hematocrit level.

I wonder if I am better at 44!

Still new to all this!!

I would appreciate your thoughts or how your levels are managed. 😁

40 Replies

Hi Mauritiu, welcome to this friendly forum. Have a look at the MPN voice website too where you will find trustworthy information. My haematologist works on the principal that hematocrit of .45 and above is controlled by venesection. I think if your other counts settle to normal levels and you are happy being around .44, then make sure your haematologist knows this.

The important thing is that you have some control over your treatment. Always write down questions you want answered and once you can again, take someone with you to appointments, as it is difficult to remember everything that is said. Above all, keep posting here as there are so many lovely people on this forum.

Kindest regards Aime x😻😻

Mauritiu profile image
Mauritiu in reply to Aime

Hi, thank you for your helpful reply. I guess it is still early days on working out how often I might need a venesection. I do feel really not good just now , hopefully it will settle. I am seeing my haematologist in a few weeks so will be able to discuss levels then . I might have a chat to the nurses at the unit when I am next in for a blood test. We are lucky to have this group to chat with 🥰🥰🥰

Aime profile image
Aime in reply to Mauritiu

Make sure you are well hydrated and eat as healthy as possible. I don’t always as I have a weakness for chocolate!🤣

Sorry, pressed reply button too quick. I think if you give in when you’re tired also and take a rest that helps a bit. Definitely have a chat with the nurses. Have you got a definite diagnosis yet? If so and you have an MPN, this forum and the website I mentioned will help you a lot. Kindest regards Aime 😻

Mauritiu profile image
Mauritiu in reply to Aime

I do try to be healthy as possible but not always 🤣 you have to live a bit too 🥰I will chat to the nurses, I am getting to know them all a bit better now 😁

Yes I was diagnosed with PV in September 21, jak2 positive, all a bit of a shock at the time. I see a haematologist not sure about MPNs in my area.

Thank you again for your replies, I hope you are well 😁

Gillian

Aime profile image
Aime in reply to Mauritiu

That’s good you seem to have medics who listen. Sometimes they don’t. Maz, our editor, lead and she probably does plenty of other jobs too, can help with providing names of MPN specialists and can also allocate you a buddy - just someone to talk to who understands what you’re going through. You will find the folk on this forum are amazing : friendly, supportive, always around and willing to help. This forum helped me so much when I was first diagnosed and continues to do so.😻😻

Mauritiu profile image
Mauritiu in reply to Aime

Thank youIt would be useful to know of any MONs I my area, I am in Perth, NHS Tayside. My haematologist works between Perth and Ninewells Hospital in Dundee.

I was thinking about a buddy, but maybe down the line a bit 😁😁

Thank you for you help

Aime profile image
Aime in reply to Mauritiu

Hi Gillian, I live in the north east of Scotland and fall under care of haematology at ARI. I have had second opinions from Dr Mark Drummond who works for nhs Glasgow (I think) but I have seen him through my health insurance privately and he is really good, very easy to talk to and thorough. Worth keeping his name in mind. 😻😻

Mauritiu profile image
Mauritiu in reply to Aime

Thank you, I did find his name and keep that in mind, will see how I go over the next few weeks, blood test next Monday.I do feel better today. Yesterday I swan twice as long as I usually do, then spend the afternoon tidying up the spare room. I think I over did it! I am not good at resting 😕

Aime profile image
Aime in reply to Mauritiu

Snap as far as resting goes! I can’t seem to switch off when I know there are things to do and I’ve got energy but regret it as next day is wasted as I’m in a heap!x😻

EleanorPV profile image
EleanorPV in reply to Mauritiu

Another Scottish MPNer here. Have a look at Maggie’s in Dundee and Fife. They both run haematology groups.

Faithrae profile image
Faithrae in reply to Mauritiu

Hi, I was also diagnosed with Polycythemia Vera in September of 2021! Something in common. Im in Texas. Girl how are you feeling? I have been tired lately. A bit depressed.

Loubprv profile image
LoubprvVolunteer

HiI was diagnosed 13 years ago aged 54 with a haematocrit of 74!

I find I m at my best with a haematocrit of between 39 and 42.

If it heads towards 44 I ask for a venesection and fortunately I have a superb haematologist who is an Mpn specialist and quite understands. If your haematologist doesn’t have that many PV patients he maybe doesn’t understand. Be straightforward. These people are not gods!

You have to be your own project manager.

You ll be fine. X

Mauritiu profile image
Mauritiu in reply to Loubprv

Hi👋 Thank you for your reply, 74!!! I feel dizzy at the thought of that level! My haematologist does seam quite knowledgeable and I have always felt she answered my questions and have left feeling supported. I am a nurse myself of 38 years so I have had plenty experience with doctors, usually telling them what I want them to do 🤣🤣🤣 but this is all new to me and trying to learn a I can.

I hope you are well

Kind regards

Gillian

Loubprv profile image
LoubprvVolunteer

Thanks Gillian I m really well. I was lucky enough to retire when I was diagnosed, and at the ripe old age of 68 (almost!) I don’t get out of bed until 9,30 or even later if I feel like it. I walk the dog for an hour and a half a day - so all will be well for you too. Diagnosis is something of a shock isn’t it? Frightening even. What is this strange thing we ve never heard of?However two years in ( and it will fly by) and you ll probably forget you even have PV most of the time. X

Mauritiu profile image
Mauritiu in reply to Loubprv

Good to hear 😄I retired at 55, I was very lucky to be able too. I worked in mental health and you could retire early. I did go back to work two days a week administrating the covid vaccinations with I really enjoyed but stopped in November, lady of leasure now, walking , yoga and swimming outdoors 😄

My diagnosis was a shock and yes no one has heard if it!! An education for family n friends 🥰

Many MPN Specialists use gender adjusted HCT targets. 45% for males. 43/42% for females. This is to control for thrombosis risk and to reduce hyperviscosity. Do note that HCT is a very fuzzy number which is affected by plasma volume, not just red cell mass.

Some of what you are describing could be related to hyperviscosity. Other aspects sound like microvascular symptoms. It is important to know that there is more to treating PV than controlling HCT, though that is a key component. Controlling symptoms is always important in treating PV or any other MPN. There is more to controlling symptoms than venesections alone.

Not sure if your hematologist is a MPN Specialist. If not, it would be a very good idea to consult with one. Just in case you have not seen it, here is a list.

mpnforum.com/list-hem./

You know your own body best. It is not your doctor's treatment goals that drive your treatment. It is your treatment goals that need to drive treatment decisions. It is up to you to let your doctor know what your treatment priorities are. Hopefully you doctor will listen and respect your right to set goals. Doctors are not mind readers and we have to direct them regarding what we want from our treatment. Good doctors always respect the paritents right to assert their needs.

All the best.

Mauritiu profile image
Mauritiu in reply to hunter5582

Thank you for your reply. I was quite shocked how good I felt when my hematocrit was lower.I guess feeling unwell for so long I just normalised it!

I am quite confident in my haematologist and I will discuss symptoms in relation to hematocrit levels. Also my platelets are increasing, perhaps this it playing a part.

hunter5582 profile image
hunter5582 in reply to Mauritiu

Glad to hear you have a good working relationship with your hematologist. I would be sure to discuss gender-adjusted HCT goal and the fact that you clearly feel better when your HCT is lower than 44%.

Note that venesections will often cause reactive thrombocytosis. This is normal. There are two reasons for this. Your body reacts to a venesection the same as a major bleeding incident where you have lost 500ml of blood. In addition, venesections deplete your iron levels. Inducing chronic iron deficiency is the point of venesections since it controls erythrocytosis. While iron deficiency without anemia helps to mange the PV it can have its own side effects, including increased thrombocytosis. I learned the latter when it happened to me. Venesection-induced iron deficiency pushed my thrombocytosis up by about 200K.

hope you get is all sorted out ASAP.

Just to add to the mix - the MPN team at UCLH in London aim to keep the hematocrit level below .43 for those with PV. At my next medical consultation I'm going to discuss a lower threshold as, now that it is year since diagnosis, I have a better understanding of the pattern of symptoms in relation to the timing of venesections. Keeping a symptom diary has been helpful.

Hi MauritiusWelcome to the gang!

I’m 56, was diagnosed with PV back in 2012, and am also in the UK.

Ever since my journey began, my consultant has been aiming to keep my HCT no higher than 45 (I was 61 at DX!!!) - yet most of our American friends seem to be way lower at 42 or less.

I’ve been on Pegasys for the last 18mnths, when my platelets climbed to 950, but still my HCT has to be kept below 45 with a very occasional venesection.

We’re all so different, so tell your consultant how you feel about aiming for slightly lower HCT. They may well agree 😊

Mauritiu profile image
Mauritiu in reply to MistyBlue2

It's interesting that in the US they seam to go for a lower hematocrit 🤔

Hi, I was diagnosed with PV when I was 55 and my HCT for the first 18months was controlled by venisections but my platelets were still high. I told my consultant about my symptoms and at that point I was put on Hydroxycarbamide. Your symptoms are likely to be a result of your high platelets.

I still get PV symptoms that are not related to my blood levels.

Please make your consultant or clinic nurse of your symptoms.

Mauritiu profile image
Mauritiu in reply to Cakeface

Hi Thank you for you helpful reply. I had not considered my platelets level, do you know what is considered a high platelet count?, mine is 800 just now 😊

Cakeface profile image
Cakeface in reply to Mauritiu

Hi, my consultant told me that they should be under 400. I'm assuming that's general and not a personal target.

hunter5582 profile image
hunter5582 in reply to Mauritiu

While the Reference Range for platelets can vary by lab, WHO diagnostic criteria for thombocytosis is 450. 800 is a significant level of thrombocytosis. It may or may not be an issue based on your presentation of PV. It is worth talking to your hematologist about.

Mauritiu profile image
Mauritiu in reply to hunter5582

Thank you for this information, I will discuss this on my next appointment.

I get very confused. I have pv and high platelets and my haemo told me I couldn’t have venesections as body thinks it is under attack and produces more platelets. Maybe other factors come into it that I am not aware of but might be worth asking the question as there are alternative treatments out there

Sorry to go off topic, but my last haematocrit was .451 and nothing was flagged, For two years now I've only been watched to see if I have PV or not (full bloods every 4 -6 months). Should I be worried? I feel OK.

Mauritiu profile image
Mauritiu in reply to Lettie_WP

Hiya, I don't really know, perhaps another conversation with your Doctor with your concerns 😊

I have PV and feel best between 40 and 42. Since you're so new to this, maybe keep note of symptoms as they appear and you can see if there is a correlation over time and give that info to your doctor.

HiExpert Haems treat symptoms first then counts, the NHS here has women and men at Hct 45, in the US it’s 45 men and women 42/43, some women feel better with HCT as low as 38, if your Haem won’t allow you to lower your HCT to try it you could get a second opinion or see a expert Haem who can then write to your local Haem, that can work well.

If all that fails maybe time to try a new Haem if poss. Patients should feel well first and counts second.

I hope that helps

Hi Mauritiu, I am PV Jak2, diagnosed at age 65, 10 years ago. For a long time my hemotologist aimed at hematocrit of 45 for me, but I noticed how much worse I always felt when it was nearly time for a phlebotomy. As a woman I suggested we aim for 42 as recommended for women in the literature. It took several phlebs to get me below 42 but what difference it has made in symptoms. I can always tell when my numbers are rising! Our bodies can tell us what they need and CBCs etc. can confirm what we already know. Be an advocate for yourself! The doctors have so much to learn about this rare disease. Learn all you can and speak up.Good luck on your journey.

Regards, Ellen

Hi, Mauritiu..I am 68 andI too feel better with lower hematocrit levels. My optimum is at the low end of acceptable, 42. As the levels start to climb, the symptoms worsen...fatigue, shortness of breath, numbness and burning in extremities, headaches and muscle and joint pain-to name a few. I meet with my oncologist every six weeks and do a CBC before to see where platelets and hematocrit numbers are. I was diagnosed with ET in 2016 and a year later with PV.

My oncologist is careful to only do series of blood phelbotomies spacing them 2 weeks apart with CBCS every 2 weeks during that time, as I am also slightly anemic.

Since we are all individuals experiencing a different journey with our diagnosis, it's important to listen to how you feel and have good communication with your Dr. I have elected not to take Hydroxyurea at this time, having had extreme side effects from it previously, although many on this site do successfully with great results! Good luck on your journey!

As you've seen here, in the US HCT is usually kept to 42 for female.

More generally, venesections (PLB) can have adverse effects over a long time period as you can read in posts on the Voice. Iron levels for example can get out of balance.

I take Hydroxy and it works very for me well to control levels. I call them "poison pills" but have come to understand they actually can have long term benefits, for those who tolerate it, without the specific iron issues that PLB may cause. But usually HC is given to those over 60.

Interferon (Besremi, Pegasys) seem to be superior for the longest term for many MPN patients as best studied by the Richard Silver MPN Center.

There are mostly shades of gray in these decisions unfortunately, and you should discuss all these options with your Dr.

Mauritiu profile image
Mauritiu in reply to EPguy

Thank you for this, much appreciated, so much to take in just now.

ainslie profile image
ainslie in reply to EPguy

Venesections don’t necessarily have adverse effects even over a long period of time, for some they can cause too much iron deficiency but on the whole most people don’t have any problems , certainly much less adverse effects than the available current drug treatments such as HU , Pegasys etc

EPguy profile image
EPguy in reply to ainslie

That makes sense. As they say, everyone is different. For those who need only infrequent venesections, (PLB) the risk should be lower. For those who require frequent treatments, the risk could be higher.

In:

nature.com/articles/s41375-...

<<Patients with PV present with iron

deficiency despite expanded erythropoiesis and recurrent therapeutic

phlebotomy induces further degrees of iron deficiency. >>

it suggests the "recurrent" aspect is the concern. For some the alternate treatments (HU, INF) are well tolerated and effective as we've seen here. If frequent and repeated PLB is needed for HCT control, the patient should discuss the related risks and options with the Dr.

But it's also clear in this report that iron vs PV are not entirely understood. An improvement noted here is hepcidin mimetics, such as PTG-300 in trials. Supposedly this therapy can provide some benefits of PLB with less iron imbalance risk.

Your initial treatment sounds a bit like how I felt. Although my HCT started higher. Be sure to let your hospital team know how you react to the venesections.

Hi Mauritius, I’m in the UK and my HCT is monitored by level not symptoms I had a venesection last week as level crept up to 49 which is highest it’s been for 1 year usually it’s between 44 and 45 not having another blood test until March but I feel better with level at 44

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