Hematocrit question

[wateron]

Currently whenever my Hematocrit is over 44 I get a phlebotomy as I don't want it to get over 45. Two weeks ago it was 43.3 with my RBC at 5.77. Today my Hematocrit is 47.8 (RBC 6.33). To me this was a huge jump in just 2 weeks. I am thinking about changing when I get a phlebotomy to whenever my Hematocrit is over 43 which could bring it down to 40 or under. Any problem with that? Currently just phlebotomy & aspirin. 76 years old male. I basically make decisions myself as I don't have a MPN specialist

[hunter5582]

There are a number of things that affect HCT besides erythrocytosis. Plasma volume is also a factor. Dehydration can impact plasma volume. It is important to understand that HCT is the default measure of PV status, HCT is a rather fuzzy measure of PV status.

The MPN Specialist I see does not want my HCT to drop below 40%. Dropping below 40% for a male is considered anemia. I had it drop all the way to 32% due to being over-phlebotomized. The hematologist actually put me on iron for a while.

It is always a balancing act when managing PV. Targeting the HCT between 40% - 45% can be a challenge.

It really is worth doing whatever it takes to consult with a MPN Specialist. I see one once or twice a year for consultation on my care plan and have a great local hematologist who handles my ongoing care.

Hope you get it all sorted ASAP.

[hunter5582]

FYI

On 08/16 my numbers were HCT=43.9, RBC=5.94, HGB=14.4.

On 10/06 my numbers were HCT=47.7, RBC=6,26, HGB=15.3.

The MPN Specisiat was not particularly concerned and did not recommend an increase in the Beremi nor a phlebotomy at this time. My regular hematologist actually pays more attention to HBG than HCT, preferring to see HGB<16.0 as the target.

I have had my HCT fluctuate by a full 3.0 in a two week time frame before. Since I have never had an incident of thrombosis in 30 years (22 with ET - 8 with PV) I am Okay with being a bit patient and seeing what my next lab on 10/17 shows. If the numbers move down then fine. If they stay up we will reevaluate options. I will likely up my dose of Besremi since I feel so much better when my iron levels are higher.

All the best.

[EPguy in reply to hunter5582]

Good to see the info on HCT Min. My provider has 40.1 Min and my last CBC was down to 40.5. If that keeps up I'll want a Bes dose reduction and hope to feel better. I know I felt worst on HU when it went below 40. My Dr. like yours, says Hb is the more relevant value, but through accident of history they use HCT, which these days is just calculated, not measured as it was 40+ years ago.

[wateron in reply to hunter5582]

My HBG range is usually between 12-13, been over a year since it was over 14 (14.1)

[EPguy in reply to wateron]

That seems unusually low Hb if HCT is near 44-45 in the same test. Do you know what is the lower range of Hb listed by your provider? By most definitions I can find, 13-14 or less is anemic. My provider has a limit of 13.7. But your HCT is not low.

A low Hb might be a consideration when having Phlbs as it presents an opposing balance to your HCT.

These are the sort of complex questions Dr can advise.

[wateron in reply to EPguy]

Hb range is 13-17. 9 of my last Hb were in the 12 range, rest in 13.

[EPguy]

As Hunter says, having an MPN specialist guiding you is best. One thing about hematology is remote consults can be an effective supplement since the specialty doesn't much require a physical presence. One common exception is spleen checks if indicated, but your regular Dr can do that. In the US remote consults are usually limited to in-state Drs since special Covid rules are no longer.

You discussed starting Besremi in prior posts. Is that still an option for you? It may be a good option for better blood control and its other benefits.

[wateron in reply to EPguy]

Although I could get Besremi I haven't. Just can't get past jabbing myself every two weeks & taking it with me while traveling. Have no physical symptoms with PV & phlebotomy's average every 6 weeks although after this 47.8 hematocrit think I might need another after 2 weeks. As far as a MPN specialist I don't know what he would advise me to do that I'm not doing now.

[hunter5582 in reply to wateron]

Regarding the self-injections, they are no big deal at all. Painless and easy to do. Traveling with Besremi is also no big deal. All that is needed is a cooler bag and the ice-gel packs it is shipped with. Going on Besremi was a big improvement for me. The side effects of the therapeutic phlebotomies were worse than the PV symptoms.

The feedback from a MPN Specialist is invaluable. They are the most up-to-date on diagnosis and treatment. They also have better knowledge of the range of issues people with MPNs often must deal with. Their input into the overall care plan is very helpful. They care also the best source if information when we have questions and can tailor the answers to the individual patient.

It is definitely worth having a MPN Specialist, not just a regular hematologist, on your care team. I hope you have one reasonably available where you are located.

All the best.

[EPguy in reply to wateron]

You're right if your current treatments are working no reason to change.

For the jabbing, I can't look at blood test needles but I'm ok with the Bes one as it is very small. I don't even feel it, with the qualifier that the ones that come with it can be dull in my experience so I use ones Dr gives me.

With Bes the jabs usually go to 1/month after the 1st year.

A reason to consider IFN (Besremi) is the possibility of preventing progression and reducing the mutation. My mutation has actually declined on Bes. But these benefits are not decisively proven and it's ultimately our individual decision which treatments we desire. And as with all our treatments, Bes has its side effects.

And you're right, if you travel frequently a cooler is required. But at 1 dose /month it's similar to monthly phlbs. Most travel can fit in that schedule, I do look fwd to that.

[plum27 in reply to wateron]

I too am happy I switched to peg-interferon. I haven't needed a phlebotomy since shortly after the change in medication. My HCT is pretty steady at 43 to 45. My orders are to have a phlebotomy if it gets over 45 but that hasn't happened for more than 2 years now. Injections are easy, though it did take me a little while to get used to the idea of it. I barely feel the needle. It's so tiny. A short trip I would just skip a week. I went on a longer trip just before Covid, took a few syringes in a thermos bottle with a cold pack and had no problems for a month. Not to suggest you change if you don't have good reason to, but don't be put off by the injections, if you do have a reason to try it.

[summerdown]

make sure you drink plenty of water and look at your diet are you eating enough fruit and veg etc.

[wateron in reply to summerdown]

Drink a lot of water & have fruit every day, probably not enough vegs

[HazeBlue]

I’m due a blood test next week and hoping I’m not going to have another venesection . Didn’t feel well when last one was done. Good luck with your bloods .

[ainslie]

that sort of jump would probably prompt me to do a retest, as others mentioned it’s important to have the same steady level of hydration and if poss test at the same time of day, those factors can make a fair bit of difference and occasionally it can be something wrong at the laboratory. I’ve also noticed drinking alcohol the day before or flying can give higher Hct labs. The above assumes this sort of jump is untypical for you.

How often do you usually venisect and how much. It’s best not to assume one untypical lab result is definitely correct and also more important not to base any major changes to your treatment on one untypical lab result, I’m sure you know that already.

[wateron in reply to ainslie]

Usually 4-6 weeks between phlebs, last one was 63 days

[ainslie in reply to wateron]

is the 63 days as opposed to your usual 28-42 days, maybe part of the explanation, I have noticed in the past that the increase rate in Hct can speed up disproportionately to the time between them if I increased the interval between them,I assume this is because the longer you wait between venisections the more your iron store increases and the faster you make RBC, it’s maybe wise to check some of the points I made in earlier reply and try to stick to consistent venisection schedule and if it’s still rising faster than normal, wise to discuss with Haem

[Sheena2020]

I am 66, a female and have had PV for almost two years. I see an MPN specialist at MSK as well as a local hematologist/oncologist. I am on Hydroxyurea and still get an occasional phlebotomy. My HCT lately fluctuates between 42 and 45. The MPN specialist advises a phlebotomy for women with an HCT over 42% and men over 45%. The hematologist/oncologist advises a phlebotomy only when I am over 45. I have to insist I get one to keep to the advice from the specialist. It really helps to be under the care of an MPN specialist.

[Loubprv Volunteer]

hi

You know we re all different. I m 68 and know a lady of 84 with PV. I feel at my best when my haemat is between 39 and 42.

In the US I think a haematocrit has to be between 35 and 42? Please correct me if I’m wrong.

My Mpn specialist likes it to be 44 plus before venesection, which is fine - but he’s very understanding if I say I would like a venesection before then. I tend to know when I need one.

One interesting thing though, a local blood test in a hospital in Lancaster showed a haematocrit of 42, whereas the blood test at my main hospital in Manchester 2 days later (a specific and superb cancer hospital ) showed a haematocrit of almost 47. No way does my haematocrit rise 5 points in two days. Obviously I trust the latter. My Mpn specialist was astounded that the two should differ so much.

My advice to you would be to make an appt with an Mpn specialist and really sort this out - however far you have to travel. I drive two hours there and two hours back every 6 weeks. Worth every mile.

It will be fine, but you need to take charge and let the medics know you re dissatisfied. NOONE will look after you like you do.

All the very best, Louise

[EPguy in reply to Loubprv]

I've not heard about a specific HCT minimum for MPN here in the US. My provider has 40.1 as the min.

On your differing results, if you're curious, HCT is actually calculated from MCV and RBC values. So it's possible one of the two are the same between your labs, while the other was the reason for the difference. My Dr says comparing Hb is more valid, was your Hb also very different?

[Loubprv Volunteer in reply to EPguy]

good lord! I’m sorry but that’s utter gobbledegook to me EP! Don t forget your terms and measurements in the US are very different to the those in the UK.

As far as calculations are concerned all the haematologists I ve come across work on the haematocrit. My haematologist and MPN specialist Professor Tim Somervaille advised me to abandon the local blood tests and go only to the Christie. I agreed. We do not discuss Hb.

I think we re all in dire danger of trying to do the haematologists job for them, and getting too wrapped up in scientific and medical terms.

I m presuming none of us here are haematologists? Whilst we do need to be our own “ project managers” we need to trust those who are caring for us. I certainly do.

I think a good comparison is this:

We wouldn’t take our car to the garage for a service, drive it home, then lift up the bonnet ( hood) and check everything over again. Well I wouldn’t anyway. I feel the same about my body. If there’s a rattle I consult my haematologist and leave him to sort it!!

I ve had PV for almost 15 years and am fine.

Best wishes Louise

[EPguy in reply to Loubprv]

You're right Hematocrit (HCT) is the standard. My MPN expert told me using HCT is not his preference, rather they should have used hemoglobin as they sometimes do to in Euro.

But I agree you're best to follow your expert's advice.

In my case I do discuss technical things with my MPN expert, he always expects something new from me as I'm forever curious. That's how I know about the HCT vs hemoglobin differences for example.

[Lena70 in reply to EPguy]

I know I aggravate my hematologist as I always have questions. But I was a medical librarian by profession, and seeing as I'm only 51, I want to make sure we are taking the right path. At my last checkup, I got answers to important questions that had been nagging me and now I have a greater understanding of where I stand and why she has made some of the decisions she has that differ from what I read here. She can fire me as a patient if she doesn't like my inquiries.

[EPguy in reply to Lena70]

there any info we might learn from your Drs comments?

[Lena70 in reply to EPguy]

Mainly, I was curious why she wouldn’t start Beresmi with the good data relating to allele burdens and why she hasn’t done an allele burden test. She said allele burden can be correlated with counts and that she believes the CBCs give us enough information to make treatment decisions. She said she is going to do that testing, but doesn’t feel it is needed until later.

She wants to start with hydroxyurea if my hematocrit and hemoglobin rise any higher.

I vacillate between wanting to research everything (medical librarian brain) and wanting to just not worry. I hate feeling like I’m not aggressive enough.

[EPguy in reply to Lena70]

You have a good point on how much should we dive into it if we trust our Dr. Like you I have a bias to learn (too) much.

It is curious why your Dr does not want AB test now, only later; usually we want to see the trend.

[wateron in reply to EPguy]

MCV always stays in the high 70's. Depends on what you mean by very different for the Hb. usually in the 12's, previous to this 13.7 it was 12.6

[EPguy in reply to wateron]



Have you discussed the reduced Hb with your Dr?

[wateron in reply to EPguy]

Have a Dr in name only, never any discussion with them or from them. There just there to authorize CBC then I decide if I need a phlebotomy.

[deniselmu]

I recently saw my heme here in Chicago, Dr. Brady Stein. He's a very well respected heme and I trust him completely. My HCT was 45.7 , but everything else looked good. I take pegasys 45 mcg /month. He thought it may have been because I had gone for a run before my appt. I'm a 61 year old female. He didn't think a phlebotomy was necessary. I think there's more of a range of normal, depending on other factors.