An explanation for why I am fatigued.

[JohnSC]

Hi,

I had an appointment with my Haematologist after my 10th venesection in 3 months. My Haematocrit has finally dropped below 45% which is good news. I was expecting to be put on Hydroxy as I am over 60 and therefore considered high risk, but instead he has put me on monthly venesections with a review after 3 months, so I am feeling positive about things at the moment.

The main point of discussion with the Haematologist was the cause of the Fatigue and general low energy levels I have been suffering from for the past year. I seem to be OK for a few hours each day until the early afternoon, after which the tap runs dry and I usually have a lie down.

The Haematologist explained that it was a side effect of PV as the cancer absorbs all available iron leaving me Anaemic. The option of taking more iron to address the Anaemia would apparently not work as the PV would grab all the iron to make more red blood cells increasing my Haematocrit levels. It would be analogous to pouring petrol on a fire.

I am grateful that I now have an explanation as to why I feel like I am running on empty a lot of the time. It looks like I am going to have to accept that fatigue and other Anaemia related symptoms are going to be part of my life that I will need to manage going forward.

On a positive note to help manage my iron levels I have modified my diet to be more vegetarian and fish centric, which I am finding to be helpful, and I now take iron free multi-vitamins. I still allow myself the occasional red meat treat as I don’t want full blown Anaemia but I will be keeping a close eye on my iron levels in the future to try and keep it low, but not too low.

I hope this is helpful to those of you wondering why you feel so fatigued at times.

All the best to everyone

John

[bordeauxgirl]

Hi John, Just wanted to say your explanation of our tiredness with PV was so clear it must be very helpful to anyone who has this condition. Also my doc recommended I ate my green's, yuk I hate green's, but I am being good and making bubble & squeak. Thank you. Bordeauxgirl.

[flfair]

Hi John,

Your fatigue is caused by magnesium deficiency, read my post "Fatigue how I cured mine" a bit further down. Hydroxy depletes magnesium big-time.

Peter

[JohnSC in reply to flfair]

Hi Peter,

Thanks for your reply about Magnesium but I would like to point out that I am not taking Hydroxy and have never taken it so that can’t be the cause, also I have taken supplements that include Magnesium for a considerable period so I don’t think Magnesium can be an issue. The reason given by the Hematologist seems more relevant and logical in my case. Perhaps others experience is different.

John

John

[Mazcd Partner MPNVoice in reply to flfair]

Hi John, this may not apply to everyone on Hydroxy. Maz

[lizk1993]

Hi John, nice clear explanation. I'm also on venesections only at the moment, even though I've previously had a heart attack and thought that I might be considered high risk. I also feel tired in middle of the day. Curious though - do you know what your ferritin levels are. At last count mine were 16.1 which is in the normal range, low end of normal, but normal. Must get better at eating my greens Stay well

Liz

[JohnSC in reply to lizk1993]

Hi Liz,

Good to hear from you. In answer to your question my ferritin level is 10 as of last week, but I don’t know if we are measuring on the same scale as normal in my test results is defined as 30 - 300 ug/l.

All the best.

John

[lizk1993 in reply to JohnSC]

Thanks for replying. Slightly different scale as normal is defined as 12 - 150 ng/ml on the one I get. Was just curious as I'm wandering how low they'll let me get - time will tell I guess.

All the best to you too.

Liz

[katiewalsh]

I find that eating greens by blending them into smoothies is a super way to consume more. Katie

[Kelly2]

Hi John

I have the same symptoms as you only I have ET? I am not sure since I have a high aematocrite. In 2 days I will have a blood check and see where I stand. I am only on aspirin. Meat only twice a week the doctor said but I try to avoid it. I am following you since I too have energy only in the morning. In the afternoon I cannot do anything but only sit and watch TV. Be well!

[MPort]

Hi John,

I have been interested in HCT level and anemia for some time. My understanding is that higher HCT indicates sufficient red blood cells and so yours at 45 as far as i understand does not indicate anemia. I did a Web search and copy an explanation below. Repeated venesections are known to cause confusion, your body thinks it is in major crisis by losing amounts of blood. Also as it says below the plasma level may be increased. That can contribute to fatigue as it readjusts.

I well remember the aftermath of regular vensections and the fatigue. I try to avoid them. I am on a low dose of interferon for PV and HCT is kept low at around 39, my max is 42. So I experience fatigue a lot. I never get used to it but adapt around it.

Good luck on your journey with PV.

Mairead

Hemoglobin. Hemoglobin is the iron-bearing and oxygen-carrying component of red blood cells. The normal value for hemoglobin varies by age and gender. Anemia is generally considered when hemoglobin concentrations fall below 11 g/dL for pregnant women, 12 g/dL for non-pregnant women, and 13 g/dL for men.

The severity of anemia is categorized by the following hemoglobin concentration ranges:

Mild anemia is considered when hemoglobin is between 9.5 - 13.0 g/dL

Moderate anemia is considered when hemoglobin is between 8.0 - 9.5 g/dL

Severe anemia is considered for hemoglobin concentrations below 8.0 g/dL

Hematocrit. Hematocrit is the percentage of blood composed of red blood cells. People with a high volume of plasma (the liquid portion of blood) may be anemic even if their blood count is normal because the blood cells have become diluted. Like hemoglobin, a normal hematocrit percentage depends on age and gender. Anemic ranges for hematocrit generally fall below:

Children ages 6 months - 5 years: Below 33%

Children ages 5 years - 12 years: Below 35%

Children ages 12 years - 15 years: Below 36%

Adult men: Below 39%

Adult non-pregnant women: Below 36%

Adult pregnant women: Below 33%

Other hemoglobin measurements such as mean corpuscular hemoglobin (MCH) and mean corpuscular hemoglobin concentration (MCHC) may also be calculated.

[lfindley]

John, we may be twins! We are the same age and both have PV. My treatment was initially giving blood. This didn't work for me because my platelet count climbed each time I gave blood, so I moved to Hydoxuerea. When I was giving lots of blood I had restless leg syndrome (RLS). I was tired then, but it may or may not have been related to the RLS preventing me from sleeping at night. The point I wanted to make is for me, the RLS was caused by iron deficiency which was caused by giving blood. For a while I took iron pills and it quickly helped with the RLS.

In July my Hematologist increased my Hydoxurea. My HCT was fine, but my platelet count was starting to get high (800K). The bad news is I've started to suffer from exhaustion. My HCT dropped a little (from 45 to 42%). I made the mistake of believing that my being tired was the HCT. I saw another doc and he said he don't worry about platelets for PV. So, I tried dropping the Hydroxurea dosage backed to the original dose. Unfortunately, my HCT crawled higher so I'm now on the same dosage as I was in July. My HCT is 45%, I'm not giving blood, and the exhaustion is increasing more an more.

I believe the most obvious answer is likely the correct answer. My problem might be that I've stopped exercising as much. I need to get back to exercising like I was -- which 1.5 to 2 hours a day. If that is not it, then I might need to accept that the PV has progressed because I am going through a bad phase with the exhaustion. Here is to hoping that exercise is the cure!!!!