Was chatting to someone who said they only experienced fatigue when HCT at 0.38 or lower. I know that HB is roughly 3 x HCT but wondering if people have differing experiences regarding impact on fatigue? ie whether most sensitive to borderline RBC, HCT or HB?
Or fatigued even if bloods normal range including iron. ie perhaps blood cells abnormal
Hi, Paul,
I’m post Et MF and I feel my worst when my platelets are high and my hemaglobin is low. Sometimes the medication exacerbates my fatigue. My last visit in July my hemoglobin was normal for the first time in a year but my RBC counts were low and my hct was borderline. But my doctor always seems to worry only about my HMG and my platelets. I think that the doctors know how to look at the whole picture rather than concentrate on one or two numbers and the patients seem to worry more about particular counts. The whole thing is really confusing, at least to me.
Hi. I suffer from fatigue despite what I’m told are normal blood counts. It’s not as debilitating as many MPN patients so I’m fortunate. Not sure if this is helpful. Katie
Hubby's fatigue doesn't always seem to relate to his HCT although does seem to get worse when hits 0.43 range. Platelets always around 700-850, RBC 6.0, Hgb 137-140 WBC 6.8-10.3.
They only look at his HCT but he's very symptomatic, it's what led to his diagnosis & has never really been controlled but they don't care about symptoms just his count. So carry on with venesections every 6-8 weeks & aspirin.
Hi I am sorry to read that your husbands quality of life issues are not addressed. When I was in his situation 14 years ago I went on medication. Pegasus was the choice and it took me a long time to stabilise on it but eventually it worked and has done so for maybe 12 years. Quality of life improved and is now stable. I am so grateful it is so and I hope you can help your husband achieve this even if it involves getting a second opinion. I had to do this all those years ago.
For me fatigue when bloods are normal range- I was tired and couldn’t understand why Months prior to diagnosis
Hi. I know you’re extremely well informed of MPN research. Can you tell me if you’ve seen research showing fatigue in MPN patients with normal CBC results & who are only on Hydroxyurea & blood thinners? Thanks, Paul. Katie
Hi Paul, I think fatigue is an underlying factor in MPNS whatever the blood counts. I keep mine at around 38 to 39 because once they go over 40 they spin to 43 and I need a venesection. I have some unexplained fatigue but I don't think it is due to the numbers. I have listened to the wonderful talks we have been offered in the past months and my impression from this is fatigue and itching feature high on the symptom list for us. I think there is a survey on this topic. I focus on exercise and diet and hydration and hope for the best.
Hey Paul... 
Hope you & yours are keeping safe & well over there...
I have struggled lately w/ a tad of fatigue... Some days it just seems to swamp me in what I would describe as waves... Yesterday, about 1:30PM I actually went back to bed for a number of hours...
My last FBC:
HCT - 0.38 HGB - 125 - RBC - 4.0 PLATELETS - 847
Next results are due tomorrow AM, and I am guessing that they will be swinging back into an upward trajectory because that is my normal trending, (like a small roller-coaster)
What is more curious to me is that my fatigue does not seem to follow in any logic that I am able to detect... My indices swing up & down over 6-8 weeks and my Fatigue doesn't seem to care where they are...?
There are likely many other variable in play here too... (?)
Just a thought...
Stay safe & well buddy...
Steve
Hi, Steve, sorry to hear that you’re going through a rough period. Sometimes I feel as you do, that there isn’t just one thing we can pinpoint, when it comes to fatigue. We can only push forward day by day and hope that tomorrow is better.
I hope things turn around for you soon.
Cindy
Hey Cindy...
Hope you are doing well too... I am fine really, those descriptions above are far less imposing upon me compared to what many others must contend w/... I am quite lucky really...
My dietary regime and my exercise seem to really keep me going, & mostly of a happier disposition too...
But, when those days do come... Just yielding to it is sometimes the best MO for me personally...
Stay safe & well Cindy, best wishes always...
Steve
Hi
I have ET and blood counts are well controlled by Pegasus. And also on warfarin as already have had clotting events. I find the fatigue comes in cycles and has very little to do with blood counts. Recently I’ve had to have a 30min power nap at lunchtime just to get through the full day at work - working at home is working really well for that! (Along with a thankfully understanding boss). It’s so bad at the moment that I can’t physically keep my eyes open. But my blood counts are well in range and the consultants are very happy with them. I’ve accepted that the fatigue is just part of the ET, irrespective of what my blood is doing and I just have to find ways to deal with it. If I need a nap, I take one. And I try to be gentle with myself when I’m frustrated that I can’t do all the things I want to, or used to be able to. I know lots of people find exercise works to counter the fatigue - I try to do a walk everyday but the clotting events I’ve had have caused too much pain if I do anything strenuous so I can’t do the running that I used to. Not sure if any of this is helpful. But I think mostly rather than focusing on blood counts or trying different meds, I’ve found that just listening to my body and resting if I need, is the way I get through the bad times with fatigue.
HCT = RBC x MCV / 10.
RBC 6.22 x MCV 68.5 = 426.607 /10 = 42.6% (From my recent lab)
HGB 12.7 x 3 = 38.1
The rough estimate that HCT = 3xHGB is just that, a rough estimate. Note that HCT is also a rough estimate of your status as it is affected by plasma volume. The best measure of PV status is red blood cell mass.
There are other hemoglobin measures that also matter, Mean Corpus Hgb and Mean Corpus Conc. Understanding how all this may affect fatigue is complex. Most of us with PV are chronically iron deficient, but do not have anemia. We most certainly can experience increased fatigue when RBCs or hemoglobin levels are too low. Where those levels are varies from person to person. Fatigue can also be driven by other factors that may vary along with the HCT (correlative not causative factors).
As though that is not complex enough, add to it that some of the meds used to treat MPNs can also cause fatigue (e.g. hydroxyurea, Pegasys). It can be hard to figure out what is the disease and what is the treatment with MPNs. Note: you can experience fatigue due to iron deficiency even in the absence of anemia.
This is a great discussion to have with your treating hematologist. The better docs will take the time to explain this and how it may be impacting you if you have questions.
Hi, Hunter, thanks for explaining the way the lab numbers work. I took a look at my last lab results in July and did the math. I’ve been concerned that my MCV and my MCH levels keep rising, for example, with my MCV being at 120.2 and my MCH at 38.8. My hematologist doesn’t seem too concerned and I think now I know why after doing the math.
Thanks again for imparting all your knowledge. You’ve been a great source for all of us. I have my next appointment tomorrow to see if my numbers are still stabilized.
Take care.
Cindy
Glad the explanation helped. Iron metabolism, hemtapoiesis, and the coagulation cascade are all quite complex. Trying to learn more about is like going back to graduate school. Bit by bit, I feel like I am beginning to understand it all better. It really helps having this forum where others share their knowledge and expediencies. Trying to answer questions also helps because it makes me think about what I am trying to learn myself and it reinforces the learning. I hope you can get your doc to explain it all better so you can make more informed decisions regarding what is going on with the MPN. I have found that knowledge is power and feeling empowered to deal with the MPN leads coping more effectively with it.
All the best.
Thanks to everyone. Very interesting and further proof that we are all impacted in different ways. I’d assumed higher RBC (but still in normal range) would alleviate fatigue since the opposite increases fatigue. And thanks to Hunter for another informative post
I agree with Steve that good diet and exercise can help alleviate symptoms. I’m conscious that stress is significant factor and afternoon naps/down time definitely help
Blood pressure and HCT
Low saturation with PV and Jakavi 20
I am 22 years old male and I have polycythemia 
Ruxolitinib Blood spot/purpura
